Thursday, October 6, 2011

Hello Brain

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
your wounded brain
©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.

Monday, October 3, 2011

~ August 31st New Neurosurgeon Appointment

Aug 31, 2011
I have an appointment with a new neuro surgeon, Dr. Michael Turner MD at Methodist, an Indiana University Hospital in Indianapolis Indiana. He's a Dr that another very close, local IH friend see's. She has had great results with him, he's a SHUNT GURU! I'm excited and nervous at the same time.

My records were all sent down before my appointment and he had reviewed them beforehand. When I got there and checked in for the appointment, right away the receptionist took the CD of my latest MRI and uploaded it to the computer. Having never been there before, we were 45 minutes early. We waited a bit, but they took me right back to a room. I had already been told what to expect with this Dr. He's very fast and to the point. Had I not known things about this Dr beforehand I might of thought he was VERY cocky... He introduces himself, and asks why I'm here. I told him a tidbit of my story, most recent surgeries with brain shunt and new lumbar shunt. He had already looked over records and MRI, and says to me, " I can restore for you a working programmable brain shunt! And you have Chiari... WHY do you have a lumbar shunt?"

He said that there is a newer procedure that a handful of neuro surgeons are doing for people with Slit Ventricle Syndrome, and he is one of those surgeons. They place the tubing in the back of the brain near the brain stem instead of in the already collapsed ventricle where it's at right now. Scary thought~ near my brain stem... But I'm desperate to get this lumbar shunt out of me. It has caused me more problems than I can even tell you... (That's a whole different post!) I love the idea of a  "Programmable" brain shunt. That way I wont have to have surgery just to have it adjusted!

Dr Turner wants me to get x-rays, they do them right in his office. He wants to see the shunts and the tubing that goes along with them. He comes back into the room after I had them done. He wants to examine my abdomen. I get up on the table and I had him feel my lumbar shunt that sits right above my left hip. It's VERY superficial, and VERY uncomfortable. You can feel it through the skin. He agrees to take that shunt out, and it's tubing. He says I need to see what's going on over here, and is pointing to my drain that co-insides with my brain shunt. He feels around it & says I think you have a mass around the draining tube... It appears I have developed a pseudomeningocele at the draining port of my brain shunt. I told him that I had just talked to my neurologist about it and she wanted me to get a CT scan to see whats going on there. He said that's great! Get the CT scan and I want the CD on the day of surgery so he knows what he's looking at. I also have a ton of scar tissue in my abdomen from all the previous surgeries.

So we then talk about the actual surgery. He's going to put in a Codman Programmable brain shunt. The last programmable shunt I had was a lumbar shunt. A programmable brain shunt can sit/rest on the skull, and not move... A programmable lumbar shunt has nothing to sit/rest on, therefore moving, twisting, or flipping over in my case, causing all kinds of problems. He will use the same incision, same access whole, same site as my current brain shunt. Which is just great news! The tubing will just travel to the brain stem instead of through the collapsed ventricle where is currently resides. While he's got my third ventricle opened up, to remove current shunt tubing, he will take a closer at the Colloid Cyst that's blocking the ventricle. And decide if it is what's causing my ventricles to collapse... He's going to remove my NEW lumbar shunt and tie off the tubing that goes to my spine. He will be leaving the actual tubes in my spine, he said it's too risky to remove either one of them, unless one of them causes a problem. But he will be removing the tubing from BOTH lumbar shunts from my abdominal cavity. And he will be opening up the tube from my brain shunt that drains in my abdomen to fix whatever is going there.

As of right now this is scheduled October 13th for an inpatient one night stay. But depending on the severity of the abdominal scar tissue and tubing issues, it might turn into a two night stay.

~ July 2011 MRI & NS Appointment ~ Blessing in Disguise

On June 28th
I had another MRI of my brain to try and figure out just what in the world is going on in this head of mine... I had been having horrible "pulling" in the back of my head, my dizziness is debilitating and not to mention the pain! Horrible head pain, mostly around the brain shunt and in the area I was decompressed. As you know, I had surgery on June 6th to change the Lumbar Shunt valve from a fixed 1.5 to 1.0. With me having Chiari~ I wont go any lower than a 1.0 since my lumbar drain is the reason I acquired a Chiari Malformation in the first place. I technically shouldn't even have a lumbar drain, but my neuro surgeon is done trying to work on my collapsed ventricles in my brain...

I have unilateral SLIT VENTRICLE SYNDROME, My Pituitary Gland is completely compressed "FLAT" (as stated on MRI) a " a perplexing amount of CSF in the suprasellar cistern represents a Cyst with possibility of arachnoid adhesion's" A Colloid Cyst along the anterior recess of the third ventricle, it is more prominent than the 2009 MRI and is now LARGER and in a different location than on the prior study. NO CHANGES in the brain stem & Cerebellum.

But read below regarding the adhesion's.. It's VERY interesting. I had gone to Neuro Rehab during the month of June, and it barely helped with my dizziness. Then I read about Arachnoid Adhesions... It all made sense after that!

Needless to say I am my own advocate, HAVE TO BE! And I had the results of the MRI and the CD in my hands before my neurologist. I waited until after the 4th of July to call her about the results. I had left Dr DeLeo a couple of messages regarding the MRI results and that I had questions about it. It took quite some time to hear back from her, I thought it was because my neuro surgeon took a 2 week vacation, and she was wanting to talk to him about it before talking to me... She finally calls on July 15th and we spent a half hour on the phone. The Colloid Cyst was her biggest concern, it's blocking CSF flow to the third ventricle. And the fact that it has moved, and is now bigger. In 2009 the radiologist called it an Arachnoid Cyst, My neuro surgeon was not overly concerned about it said people get them all the time after brain surgery. Now it's bigger, and has moved... My theory is that it's responsible for my current brain shunt failing. The Colloid Cyst is blocking the third ventricle, and that's the ventricle where my brain shunt pulls fluid from... I don't know, I'm not a Dr but it seems like the logical reason, for after three years of a wonderfully functioning brain shunt to stop working...

July 19, 2011
Chicago Bound...

Post-op appointment with neuro surgeon. I know~ my surgery was June 6th but I had to cancel one appointment, then came the 4th of July week and after he went on vacation for two weeks. Typical post op appointment at first, we talked about how I was doing since the last shunt valve change. I proceeded to tell him that my SWOOSHING came back on July 28th... He just kinda threw his hands in the air, looked me in the eye, and said that there is NOTHING ELSE he can do for me. I tried talking to him about the MRI, handed him the report, he barely looked at it, and said, "I cannot help you any further! You need to go to Mayo or somewhere like that!" I was devastated, cried... BUT I knew that he was probably going to do this. He wouldn't even entertain the possibility that the Colloid Cyst was blocking CSF flow to my brain shunt. He had his mind made up, I think before he even came into the room... He has tried to dismiss me as a patient once before but he had to keep me a little longer to fix his screw up on my lumbar shunt tubing... I had already talked to my neurologist about a referral to Indy Dr, she said I just needed to talk to my Neuro surgeon about the cyst and we'll go from there, I tried to tell her this was coming, she didn't think he'd turn me away... BUT HE DID! When I got home from the NS appointment I called Dr DeLeo's office and left her a message that I needed the referral to Indianapolis and all my records sent to Dr Michael Turner, MD.

Blessing in disguise!

~ June 2011 Dr appt., MRI & Lawyer

I went to see a Lawyer RE: filing an appeal for Social Security Disability Income. I have NEVER met with a lawyer ever... So needless to say I was scared to death! She asked a lot of question's and I told her what's been going on since 2003, and who my Dr's were... She agreed to do the case, we agreed to hire her! We were there for a few hours, due to the Appeal paperwork that needed to be filled out. She wanted answers to all the test I had done for the "new neuro dr" but I didn't have a followup appt with her until the next day to get those results. She said if I have "dizziness" that I would be golden for SSD, because neither one of my conditions are SSD approved... I told her I had a ton of tests done, but don't know the results... Jeff & I had mixed emotions when we left the office. Bitter Sweet. When I had the tests done, I prayed nothing else was wrong with me, now i'm praying there is something else wrong, to help this process go smoothly since IH & Chiari are not approved disabilities... The next day, we meet with my new neuro to get all the test results.

New Neurologist appointment, Dr DeLeo, she meets with me at 8am, before reg patients! I felt 100% of her attention, she made "special" time to meet with me!!! Well, as it turns out, I do have some serious Vestibular Disorders! I suffer from Dizziness!!! BONUS! I'm only happy about that because I started to feel like people didn't believe me, that all the times I have to pass on "get togethers" parties, special occasions, etc... I now have proof! I have something serious going on in my right ear, inner ear, she wants to prescribe me a med, but wants me to think about it/research it right now! (I liked that! She didn't shove pills down my throat) My MRI, is just a constellation of problems, ventricles, Chiari, decompression surgery, I need to have another shunt revision, she really wants me to get a "programmable" shunt, but we already know how that turned out once already, but she see's to think that with "enough" weight loss, that a programmable lumbar shunt will work for me in the future. Dr DeLeo is going out to dinner w/ my NS Dr Munoz later this month, and they are to discuss this! (I like that too!) I also have another issue that I've been fighting w/ Dr's about for years. I have a Positive ANA... AGAIN!!! It comes & goes, I've been trying to get a Dr to look into it, but they always say it's no big deal, well this time, my # was sky high... It needs looking into now! AnA is AntiNuclear Antiboby = autoimmune disorder... To go along w/ it, my ESR & C-Reactive proteins are very high, which is also an indicator of autoimmune disease... And to top it all off... I am here today at my regular Dr because I need to get a follow up chest CT, because the one I had done in Feb showed a spot on my lung... Radiologist recommended a follow up CT in 3 months...

Saturday, July 2, 2011

~ Surgery June 6, 2011

On June 3rd, I go back up to Rush, I have 3 Dr appointments. Dr Mizen, a Neuro Opthalmologist, Dr Khandelwahl, a Rheumotologist, and Dr Munoz, my Neuro Surgeon.

Dr Mizen and his staff were really amazingly nice people, problem is... my Opthalmologist here in my hometown, Dr Scott Cory runs all the same tests a Neuro Opth does, and has State of the Art Equipment. Dr Mizen, has OLD equipment, wasted trip in my opinion, but my neurologist wanted me to see him for a second/third opinion. The great thing about this visit, is that he said he did not see any need for me to back on Diamox!!!
And if you read my previous post regarding my surgery on May 27th, you'd know that my Neuro Surgeon did NOT change my shunt valve, so buy the time I saw the Neuro Opth, I was losing my visual field. (peripheral vision)

Dr Khandelwahl is a Rheumotologist. I am being tested for Auto Immune Diseases. My blood work has been a little concerning giving my history, my neurologist thought I should see a specialist to look into it.

~ Finally I meet with Dr Munoz to plead my case to him that I need this shunt valve changed from a 1.5 to a 1.0. He met with me on a Friday, he sees patients on Tuesdays, so it was VERY nice of him to meet with me in between surgeries. He was very much against changing my valve number to a lower setting, due to the fact that I might then have a low pressure headache. We talked for about 45 minutes, he only agreed to do the surgery with a backup plan, and that back up plan was to stay in the hospital for 3 days to monitor me for any signs of a low pressure headache. He got his MA, and we scheduled the surgery for Monday!

Monday June 6, 2011 We have to be at Rush @ 5am, surgery is scheduled for 7:15am. Being that it was the last week of school and Tiffany had ETA's, she did not go to Rush with us, and went to school. Jeff & I got there on time, and everything was going as planned, until we both fell asleep upstairs in the holding area, and was awoke by Dr Munoz's physician assistant... She was freaking out because I hadn't gotten my IV yet. Well we both fell back asleep... Then all of a sudden EVERYONE comes rushing to get me, I barely was able to give Jeff a kiss goodbye, and they wheel me off. NOW ~ usually I've got versed running through my IV, and I'm out by now, but I don't even have an IV, and now I'm awake in the operating room, which is like 12 degrees! LOL... I get onto the surgery table, they are working on both my hands to get an IV in, my right hand was poked twice, complete fail, but they get one in my left hand! SOMEBODY dropped the ball on my surgery I guess Dr Munoz was PISSED!!! it was Anesthesia ~ they NEVER came to check me in while I was in the holding area, granted I'm a "frequent flyer" there at Rush, the staff there is VERY familiar with me.

Anyway surgery goes just fine, and as planned with no complications.

Surgery was on Monday morning, and I have to stay in the hospital until Wednesday due to my agreement with Dr Munoz. If I was showing signs of a low pressure headache, I was to have surgery on Wednesday to change the valve back to a 1.5...

Monday was rough, Jeff & I were very tired, and slept most of the morning/afternoon. I was very sore, this is the 4th time this same incision has been opened up including it's initial placement in January 2011.  Jeff left sometime around 2, to beat the traffic, and I slept till around 5 or so.

I had awesome nurses this time! Everyone was wonderful, my neuro surgeon came to check on me before he went home for the day, he NEVER sees me the same day of surgery! He really was worried about changing that valve, I WASN'T... Not when I functioned with my first lumbar shunt as a wide open pediatric valve... 1.0 was a bit off from wide open! So I knew it would be OK!

Tuesday June 7, 2011 I was up waking the halls, I was eating OK, and have Physical & Occupational Therapy that day.
Dr Munoz came in once again before his clinic hours started at 1pm, and he was happy and surprised that I was not having low pressure headaches. It's a joke between him & I now, because when I met with him on Friday he said it's gonna be a I TOLD YOU SO situation! Either he is gonna tell me I told you so that you'd have low pressure, OR I told him so... That I was NOT having low pressure. So we joked about it, and he reminded me that I wasn't out of the woods just yet, and if all looks good he'd let me go home on Wednesday. I have known Dr Munoz since 2005. We have a pretty good relationship ~ we can joke around like that!!!


~ Finally in the car, on my way home! YEAH!! We get about half way home, and I tell Michelle... I DON'T HAVE ANY KEYS!!! LMAO! This is the first surgery Jeff didn't pick me up when I was discharged because of his new job!!! So since I didn't look tooooo horrible, we went to a local cafe, UPTOWN Cafe in Valparaiso, In and had a couple of coffee's until my daughter was home from school! That was so funny!!!

Today is July 2nd and I have been very busy, I go to Neuro Rehab two times a week, and been having some other issues. And have been seeing a handful of Dr's and having all kinds of testing done to see what the hell is going on with me! Sorry for the delay of this post. I know some of you have been waiting for me to post it!!!

Friday, June 10, 2011

Chiari and other related conditions - Angels



This is a list of people that we know of who have past on from Chiari, IH/PTC and other conditions: R.I.P

Garion Michael Barber
Orange County, Florida
March 29, 2008
Featured on Dr. G Medical Examiner Episode, Garion was an 8 year old boy who died in his sleep; reason for his death was ruled 4 months later as Chiari, a diagnosis a doctor had labeled on Garion earlier but never bothered to tell the parents.

Len Lannon 
Philadelphia, Pennsylvania
June 12, 2008 
Len had brain and spinal surgery on May 1, 2008. He suffered from Chiari Malformation. In addition to the brain surgery, two cervical vertebrae were also repaired. Len suffered some major complications on the third day of recovery. He developed bacterial meningitis, and suffered a stroke.

Charles Ross Oscar “Chip” Vierow
Lakeland, Minnesota
November 6, 2008
Founder of WACMA 
Had been fighting a courageous battle with a liver disease called nonalcoholic steatohepatitis (which is not associated with Chiari). He spent the last few weeks in the intensive care unit awaiting a liver transplant, but became too sick before a liver became available for him. 

Clinton Botha 
East Timor, New Zealand
March 7, 2009
A young New Zealand soldier who served in East-Timor. Botha’s promising career was being hampered by debilitating headaches, and he was told surgery would relieve pressure on his brain. However, twelve hours after that minor operation, Clinton died of respiratory failure at Christchurch hospital.

Brianna Lynn McCarthy
June 4, 2009 
Peacefully away at the Health Sciences Centre St. John’s, NL on Thursday June 4, 2009. She was 34.

Rebecca Pence 
June 2009

Jessica Depassano {Chiari}
Wayne, New Jersey
August 27, 2009
25, went into a coma for 3 weeks. 

Kelly Jean Davis Morrill {Chiari} {EDS} {Tethered Cord} {Hydrocephalus} {Subcraneal Instability} 
Layton, Utah
October 10 2009
Two decompression surgeries, second was a full sinus, csf leakage on both, viral meningitis, shunt placement surgery, cranial placement surgery, 11 shunt revisions, staff meningitis, TC surgery. Kelly, 44, passed away peacefully on Saturday, October 10, 2009 after a long and valiant battle with Arnold Chiari Malformation. Kelly was a loving wife, mother, daughter, sister, aunt and friend. She was born February 4, 1965 in Ogden, Utah. Attended Utah State University, served the deaf as a sign language missionary in the Virginia Roanoke LDS mission. Kelly started a website to provide help, support and information for others who are affected by the Chiari Malformation. 
She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah.

Sarah Thomas {Chiari}
Joliet, Illinois
October 14, 2009 
22, Thomas eventually learned about a renowned neurosurgeon based in Milwaukee, Dr. Dan Heffez, who had performed operations on hundreds of patients with similar symptoms since the late 1990s. The published results were encouraging, said the teen, whose familiarity with medical vernacular was light years ahead of her chronological age. With the wholehearted support of her parents, Thomas scheduled a consultation in the fall with the physician in Milwaukee. He detected blankets of scar tissue draped around the teen’s brain stem from Arnold-Chiari syndrome and suggested surgery as soon as possible. “It was such a relief that someone found something,” she said. The dedicated high school honor student was able to schedule the surgery during her Thanksgiving vacation, so she would miss the least amount of school as possible. On Nov. 21, 2005 Thomas underwent surgery. While recovering from the operation, she was delighted to wiggle her toes again and move quite easily from the hospital bed. “It was nothing short of a miracle,” said the teen-ager’s mother. Speaking about the teen’s remarkable improvement, Karen said, “I can’t describe it)

Melinda Kay Fancher {IH}
Weatherford, Oklahoma 
January 5, 2010

Charla Cochran {Chiari}
Dallas, Texas
March 18, 2010
Mom of 3 great kids; Collin, 14, Maddie, 12, and Macie, 6. Was married to the love of her life, Jeremy. Had an endoscopy on 3/13, died in her sleep 5 days later.

Brayden Asher {Chiari Type III}
Tomball, Texas
April 12, 2010 
1 month old with Chiari Type 3

John Smith {Chiari}
Grapevine, Texas
April 23, 2010
John was decompressed in 2004, he was an amazing father, son, brother and friend. John was 36 when he died leaving be hind two amazing children Colton and Garrett. He was found in his front yard, he could no longer take the pain and the Doctors said deal with it. A graduate of Grapevine high school, he got his degree at TSTC in Waco worked at Gulfstream Aerospace. He could make anyone having a bad day have a good day. There was nothing he couldn’t do or fix except Chiari. Loved the Cowboys more then anyone I have ever seen, crazy. 

Tyler Moore {Chiari}
Lorain, Ohio 
May 29, 2010 
20 years old with Chiari 

Sally Meehan {Chiari}
Filton, Bristol, South Gloucestershire, UK
June 29, 2010 
39 years old six months after giving birth to her second child Mrs. Meehan died in hospital after an operation to treat a rare brain condition. The former Filton High School pupil had gone under the knife after being diagnosed with a previously undetected condition called Chiari malformation. On June 26 she died after failing to recover from the emergency operation. She had an operation at Southampton General Hospital in a bid to treat the illness and although it was initially deemed a success, her health deteriorated, causing heart failure, and although she underwent an emergency operation, she never recovered.
Nicholas Joseph Thornton {EDS} 
August 18, 2010
Milford, Michigan
14 years old.

Wendi Snell {Chiari}
Jacksonville, Arkansas
September 18, 2010 
36 teacher, wife, & mother from Jacksonville

Amy Krambeck Campbell {IH}
Nashville, Tennessee
September 18, 2010
I have intracranial hypertension (IH) since 2005 following a stroke. This was due to 12 clots in the right side of my brain caused by clotting disorders. My spinal pressure is out of control and I have a shunt in my brain to help relieve pressure, but it isn’t enough. I have had 9 brain surgeries, 4 spinal surgeries, lost count of the spinal taps, numerous other surgeries and infections. I take between 12 and 15 pills daily to manage my blood and prevent seizures. She passed due to the clotting disorder after unrelated surgery.

Ashtyn Jeanne Mulherin {Chiari}
Langhorne. Pennsylvania
October 15, 2010
19, had surgery for Chiari and then 8 days later she contracted meningitis and several other things went wrong. She spent 7 weeks on life support. 

Elizabeth Dinger Beckett{IH}
Irving, Texas
November 27, 2010 

Nahtyia Pennington {IH}
December 30, 2010

Janet Walters {IH}
Camby, Indiana
May 2, 2011
Janet Walters was found on May 2, 2001 in her car after being told by her surgeons that there was nothing else that could be done for her. She was from Plainfield Indiana. She is survived by her husband and children.

Becky Harms {Chiari} {EDS} {Tethered Cord}
Norway, Michigan
May 16, 2011
She died in her home May 16, 2011 after several years of health issues due to Chiari Malformation. She is survived by her husband and children. 

Michelle Marler McCollum {Mom of a Chiari Kid and Chiari Advocate}
Amarillo, Texas
May 20, 2011
Lost her 5 year battle with cancer. She had lost most of her leg and dealt with many infections in that leg on top of the cancer. Her son, Mason, is a Chiari Kid and Michelle worked long and hard as an advocate for her son and all Chiarians. She was a moderator for Chiari Connection International 

Michelle MacDonald {Hydrocephalus} 
Oshawa, Ontario, Canada
May 23, 2011
Along with Hydrocephalus, Michelle had been fighting Septicemia and Diabetes

Kristi Smith {Chiari}
Columbus, Ohio
May 27, 2011
She passed away due to complications during her 5th decompression surgery.

Shannon Paige Hudson Terry {Chiari}
Carrollton, Texas
May 31, 2011
Mother of Madison, Wife of Joe. She passed from complications related to medications she was taking to manage her severe Chiari symptoms. She was 5 years post-decompression.

Barbara Mostow Goldenhersh{EDS}
Belleville, Illinois
June 10, 2011
Passed from complications from a blood clot in her interior jugular vein

Saturday, May 28, 2011

~ UNFORTUNATLY, my surgery was a complete FAIL!


So on Friday May 27, 2011 I go to Rush, in Chicago, for a Lumbar Shunt Revision. First of all this surgery was scheduled 10 days ago, and I check in at registration and the receptionist tells me that the procedure does not have authorization from my insurance, and I say why not? This surgery was scheduled 10 days ago... She says that I was an add on yesterday!  WTH??? Which means that Dr Munoz's Nurse Practitioner DID forget about the surgery... She was supposed to call me last week to do consent over the phone, and she never did... I had to call her the day before surgery and remind her she never called for the consent! Anyway, I signed the paper saying I was responsible for all charges if insurance doesn't pay... Whatever! I was miserable! And I knew it wasn't gonna be a problem with the Insurance. So we get thru that, they take me back to the pre-op area where they do your vitals, and get gowned up... They don't have my History & Physical that I JUST HAD DONE ON MONDAY!!! I sat at my Dr's office for 3 hours (because it was a fit in appointment) to have this done and missed my best friends sister's burial to get it done... AND I TOLD THEM MY SURGERY WAS ON THURSDAY, JUST TO ENSURE MY PAPERWORK ARRIVED ON TIME! I thought I'd die when they said they didn't have my History & Physical... I told the nurse that I knew his number so they called 2x's to get it! I missed my surgery time because of that, so he took an emergency case... They finally got the H&P and I go upstairs to the holding area. I requested to see Dr Munoz before the surgery because I had a concern about the shunt placement. We discussed that first, he said he would do his best to move it without making another incision.  Then we discussed the shunt and how it's not draining enough fluid, he told me & my husband right there that he was NOT going to change the valve setting, the only thing he was going to do was check the valve to make sure it was working properly, make sure there were no kinks in the tubing, and that there were no clogs... He argues with me about the setting of the programmable shunt, telling me that his documentation said I was fine at a 1.5 setting, and I said, "REALLY" when was that, because that damn thing was malfunctioning from the very get go... He argued with Jeff and I for about 5 minutes over this... So now I'm laying there, PRAYING that maybe it IS just clogged, or not working all together...  So I finally get the IV with Versed, say goodbye to Jeff, and off I go...

I don't think my surgery was until 1:30pm, it was supposed to be 10:15am
My Neurosurgeon opened up the previous incision (2nd time this shunt has had to be opened after initial placement) and shunt was indeed working, no clog, no kink, and it's draining just fine... So he closes me up, and he was done! I needed a different valve, one that would drain more fluid!!! As I laid there in the recovery room, my head was killing me, and was swooshing like CRAZY!!! I was beside myself that he did this! Put me thru all that, and NOT change the valve! I am soooo pissed off!!! He has been giving me an attitude and has been kinda standoff-ish ever since he put the programmable shunt in as a Lumbar Shunt and it Malfunctioned!!! GOD FORBID THAT SOMETHING "HE DID" DIDN'T WORK! So ~ sure enough, he opened me up, said it was working... And that was it! I NEVER SAID it wasn't working, I said I NEED more fluid drained off... Which means, I needed a different valve! The swooshing will drive someone CRAZY!!! I CANNOT STAND IT! And am SO LET DOWN right now! I kept telling myself on Thursday that in less than 24 hours I'll feel better!

Friday on the way home from the hospital, (it turned it into an outpatient procedure) I told Jeff the swooshing is horrible, and I feel like my head is in a vise... How can that be OK with any Dr? That your patients brain is compressed by all the fluid that is in there, and I cannot even function at Neuro-Rehab or anywhere else for that matter, because of the pressure... I was wide awake from 2am - 4am because I was in so much pain, my incision was very painful and my head is killing me. I had to get up and eat a banana so I could take my pain meds.

And let me tell you, 9am on Tuesday I will be on the phone with my Neurologist telling her she needs to order me a spinal tap so I can prove my pressure is elevated! And that she needs to fax all of my information to IU in Indianapolis. Then I will be leaving Robyn (NS's Nurse Practitioner) a really nasty message about what he did & didn't do, She needs to remind him that the programmable shunt NEVER was set right, because it malfunctioned...  Then I will be calling my family Dr and demanding to speak to him about how I missed my surgery because his office didn't fax my stuff on time... And the only reason I would do that is because this is not the first time this kind of thing has happened. I called his office a week ago Monday and left a message, and I was at his office this past Monday and still NEVER heard back from them, and it was a question regarding a RX that he wrote me.


Friday, May 20, 2011

~If Tomorrow Starts Without Me~

If Tomorrow Starts Without Me…

If tomorrow starts without me, and I’m not here to see,
If the sun should rise you find your eyes all filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
While thinking of the many things we didn’t get to say.
I know how much you love me, as much as I love you
And each time that you think of me, I know you’ll miss me too.
But when tomorrow starts without me please try to understand,
That an angel came and called my name and took me by the hand.
He said my place was ready, in heaven far above
And that I’d have to leave behind all those I dearly love.
But as I turned and walked away a tear fell from my eye.
For all my life I’d always thought, I didn’t want to die.
I had so much to live for, so much left yet to do.
It seemed almost impossible that I was leaving you.
I thought of all the yesterdays the good ones and the bad.
I thought of all the love we shared, and all the fun we had.
If I could relive yesterday, just even for a while,
I’d say goodbye and kiss you and maybe see you smile.
But then I fully realized that this could never be,
For emptiness and memories would take the place of me.
When I thought of worldly things I might miss come tomorrow
I thought of you and when I did my heart was filled with sorrow.
When I walked through heavens gates I felt so much at home.
God looked down and smiled at me from his great golden throne
He said, “This is eternity and all I’ve promised you”
Today your life on earth has passed but here life starts anew.
I promise no tomorrow, but today will always last
And since each day is the same there’s no longing for the past.
You have been so faithful so trusting and so true.
Though there were times you did some things you knew you shouldn’t do.
You have been forgiven and now at last you’re free.
So won’t you come and take my hand and share my life with me?
So when tomorrow starts with out me don’t think we’re far apart,
For every time you think of me, I’m right here in your heart.

Monday, May 9, 2011

Lawyer Appt & Follow up with New Neurologist

So Jeff & I went to see a Lawyer on Tuesday 5-3-11 RE: filing an appeal for Social Security Disability Income. I have NEVER met with a lawyer, ever... So needless to say I was scared to death! She asked a lot of question's, and I told her what's been going on since 2003, and who my Dr's were... She agreed to do the case, we agreed to hire her! We were there for a few hours, due to the Appeal paperwork that needed to be filled out. She wanted answers to all the test I had done for the "new neuro Dr" but I didn't have a followup appt with her until the next day to get those results. She said if I have "dizziness" (Ataxia) that I would be golden for SSDI, because neither one of my conditions are SSDI approved... I told her I had a ton of tests done, but don't know the results... Jeff & I had mixed emotions when we left the office. Bitter Sweet. When I had the tests done, I prayed nothing else was wrong with me, now I'm praying there is something else wrong, to help this process go smoothly since IH & Chiari are not approved disabilities... The next day, we meet with my new neuro to get all the test results. Our Lawyer used to work for SSD, that's how she got into helping people "fight" for it. She said that it's a proven fact that people who have "dizziness" CANNOT work... That's why it was Bitter Sweet. I surely don't WANT any more things wrong with me... But it is already broken, I've already lost my job, it's PROVEN by tests that I AM DIZZY!!! Lol... I think we knew that!
The next day, Wednesday 5-4-11 we see Dr De Leo (new neurologist), she meets with me at 8am, before regular patients! I had 100% of her attention, she made "special time" to meet with me!!! Well, as it turns out, I do have some serious Vestibular Disorders! I suffer from Dizziness!!! BONUS! I'm only happy about that because I started to feel like people didn't believe me, that all the times I have to pass on "get together's" parties, special occasions, etc... I now have proof! Lol... I have something serious going on in my right ear, inner ear, she wants to prescribe me a med, but wants me to think about it/research it right now! (I liked that! She didn't shove pills down my throat) I also have issues with my left ear, not as sever as the right side. My MRI, is just a constellation of problems, slit ventricles, Chiari, decompression surgery... I need to have another shunt revision, she really wants me to get a "programmable" shunt, but we already know how that turned out once already, but she seems to think that with "enough" weight loss, that a programmable one will work for me in the future. Dr De Leo is going out to dinner w/ my Neurosurgeon, Dr Munoz, later this month and they are to discuss this! (I like that too!) I also have another issue that I've been fighting with Dr's about for years. I have a Positive ANA... AGAIN!!! It comes & goes, I've been trying to get a Dr to look into it, but they always say it's no big deal, well this time, my # was sky high... It needs looking into now! ANA is Antinuclear Antibody = autoimmune disorder/disease... To go along w/ it, my ESR & C-Reactive proteins are very high, which is also an indicator of autoimmune disease... And to top it all off...I am here today at my Dr because I need to get a follow up chest CT, because the one I had done in Feb. showed a spot on my lung. So on Tuesday May 10th I go for a CT scan with & without Contrast...

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino

Tuesday, April 12, 2011

Results of Lundbeck's Donation of $10,000 to NORD for Raise Your Hand!

Thank you for Raising Your Hand to Fight Rare Diseases!

In the weeks before Rare Disease Day 2011, many of you circulated the Raise Your Hand to Fight Rare Diseases icon to your members and friends. Lundbeck Inc. had made a commitment to donate $1 for each click on the icon, up to $10,000, to NORD's General Research Fund. That fund supports research on rare diseases for which there are few other sources of funding.
Thanks to your amazing support, there were more than 11,000 clicks on the Raise Your Hand icon! As a result, Lundbeck has made an unrestricted donation of $10,000 to NORD's General Research Fund.
NORD's Research Committee decided to allocate the donation to an existing restricted research fund for diffuse scleroderma, also known as systemic sclerosis. That fund was established several years ago by patients and their families. It has received a steady stream of small donations over the years, but was still several thousand dollars short of the amount required ($33,500) to fund a grant.
The Lundbeck donation has made it possible to fund a grant this year. Recently, NORD posted its Requests for Proposals for 2011.
NORD has received many emails over the years from patients who have this very disabling rare disease. One patient recently wrote: "Please work hard on behalf of all of us who are trying so hard to maintain a quality of life."
Your clicks to "Raise Your Hand" will give new hope to these patients and their families. Thank you for supporting this important campaign on behalf of rare disease research! 

(This was the icon shared by many with friends and family in the weeks before Rare Disease Day 2011.)

Monday, April 4, 2011

Appointment with "New" Neurologist ~ Finally...

On Feb 9th (I think) I made an appointment with the Neurologist my Neurosurgeon referred me to, Her name is Dr. Andrea De Leo.  Her Office is in Munster, IN. Her first available appointment was not until Monday, March 28, 2011 "NOTHING" earlier, I thought I'd die when I heard the receptionist say that! So I waited weeks, and had a few more surgeries!

My husband started his new job with the Boilermakers the week prior to my appointment. He was called out on a job that was 5-12hr shifts, and then it would be done, he would have to wait to be called out on another job... Someone was looking down on us that Monday morning of March 28th, because thankfully he did NOT get a call to start another job that day, and he was able to accompany me to this new Dr's appointment. (He did get called on Tuesday to start on Wednesday thank God!!) It's not that I didn't have a way to get there, it's just NOBODY knows you better than your spouse, and my brain is so screwed up that I can barely remember what I did yesterday, let alone going through my whole history, again... with a new Dr.

It's a short drive to Munster, THANK GOD! Lol... I have horrible Anxiety in the car!

Dr Munoz sent over an letter to Dr. De Leo, introducing me to her (re: my history), and she got my records from my prior neurologist, that I only saw about a dozen times, and I brought my most recent Head CT & MRI for her to review. To my surprise when she walked into the room, she was either my age or just a bit older... She is a Vascular Neurologist, and SHE was totally blown away while I'm telling her my story. She sat with my husband & me for almost 2 hours, and she never rushed us!!!

She did the "regular" Neuro Exam after I told her my very lengthy story, but she performed some things I've never seen or had done before. I don't even know what they were to tell you! I really liked her, for a first visit. I guess I will need to see her a couple of times before I have a true opinion of her... BUT so far, so good! : ) My last Neurologist treated me like all I wanted was drugs, even though I NEVER once asked him for anything, except a spinal tap when I knew I was having Shunt Malfunction. He didn't believe me in May 2010 when I told him something was going on, then in September 2010 (still having issues) I told him I needed a Spinal Tap and that my shunt wasn't working properly, and he told me that there was nothing wrong with my shunt, and that he couldn't help me any longer. Later, I got a letter from his office in the mail, they cancelled all my future appointments, and told me he would no longer see me as a patient! Then in October 2010, I had a spinal tap ordered by my NeuroSurgeon, and sure enough, my pressure WAS elevated... Dr. De Leo was blown away by his actions, and she seems VERY sincere, and interested in getting me better...

These are the tests that she ordered for me...

CDP ~ Computerized Dynamic Posturography- balance test
VNG ~ Videonystagmography - for testing inner ear and central motor functions
ABR ~ Auditory Brainstem Response - a screening test to monitor brainstem response and hearing loss.
VEMP ~ Vestibular Evoked Myogenic Potential - is testing on the inner ear. (Balance & Dizziness)
TCD ~ Transcranial Doppler - measures the velocity of blood flow through the brain's blood vessels.
EEG ~ Electroencephalograph - records the electrical activity of the brain.
Neuro-Rehabilitation with an Occupational Therapist, due to balance & dizziness issues.

~A new Sleep Study - Apparently, when you have Sleep Apnea, you should be tested once a year! I haven't been tested since the original test in August 2009. I developed Sleep Apnea because my Chiari Malformation narrowed the space in my neck.

~Referral to my Ophthalmologist ~ Dr Scott Cory, I have Papilledema in both eyes, Right eye is worse, due to Chronic Intracranial Hypertension, she ordered a bunch of tests for him to perform.

~Referral to a Neuro-Ophthalmologist for possible Optic Nerve Sheath Fenestration surgery, to relieve the Papilledema. Dr. James Goodwin @ UIC in Chicago.
And lastly~ a referral to a therapist for my depression... : (  Ughhhh... Tried it once before, & HATED it.

Lastly - Dr De Leo wrote me off work for another 8 weeks while I get all these tests done! My new return to work date is May 16, 2011.

Quote of the day from a FB friend.
To feel pain, is to have feelings.
To cringe at the light, is to see,
To run from the noise, is to hear.
To have a bigger brain than most, is a heavy medal to wear, yet we think deeply!

I am very thankful for all my new friendships, especially the ones who are right in my own back yard!!!
NOBODY can relate you my problems like a fellow IH'r & Chiarian...

Saturday, April 2, 2011

People living with a chronic illness need you to be there, even if they have trouble saying it.

Since being diagnosed with 2 chronic illness's, Intracranial Hypertension (IH), & Chiari, I have gone through a lot. Both are often an invisible illness, and many times it is not fully understood what we go through on a daily basis. Please read what I have copied below and try to understand a few important things that we want you to know.

Chronic illness isn't something that we like to talk about, but every day people are diagnosed with an incurable illness or disease. Learning to care for and support family and friends with a chronic illness takes time and patience. When the patient is first diagnosed, everyone in the circle of family and friends gathers the wagons. If the initial diagnosis involves hospitalization, some will visit, others will cook food, and still others will offer to babysit or clean house. Everyone wants to help out in any way possible. This is a great way to show your support and friendship. The problem with chronic illnesses is that, because they last over time, usually the extensive support system disappears. People get tired of erratic hospitalizations and days on end when the illness puts the patient down for the count for a week or more. It is easy to become immune to the painful complaints of the patient, but is essential that you do not. We still need you to be there.

If you are a friend, family, or caregiver of a chronically ill person, commit to that individual and yourself that you are willing to stick with them through thick and thin, in sickness and in health. The chronically ill need to know that you understand and that you care. At some point in the illness most patients begin to assume that anyone who sticks with them is doing so out of obligation. Find every way possible to assure the patient that you are standing beside them, going to doctors' appointments, or spending nights in the hospital because you care. It is up to the caregiver and friends to help allay the concerns of the patient that they have become a burden.

Unless you have had a chronic illness yourself, you cannot imagine the mental battle that goes on in addition to the physical battle that we as individuals are facing. Sometimes, previously vital and healthy people are struck suddenly with the symptoms of their illness. They may be aggressive, hard workers, productive people in society. When they are taken out of the game, they suffer a huge blow to their sense of self-worth. They may feel very lonely and become depressed as time goes on.

As a friend or family member, you can play an important role in two ways. You can affirm their worth verbally, via emails, Facebook, or cards. You can't tell them enough how important they are, and how valuable they are as a human being. You can also help build their self-worth by encouraging them to do the things they feel like doing. Don't treat them like invalids, especially on a good day, if they feel like getting out and doing something, do it. Don't wait. The next day, or even the next hour their physical stamina can wane.

Remember, when they get weak, can't do things you want to do, or lack the spontaneity they once had, it is the illness that has caused the change. You are the healthy one, and must not take declined invitations personally. Because the chronic illnesses, by definition last over the long haul, you may have to remind yourself of this again and again. The one who is ill is engaged in the battle head-on. They are fighting to regain health and some sense of control in their life.

People living with a chronic illness need you to be there, even if they have trouble saying it. You are an important part of their life and you play a vital part in their recovery.

Friday, April 1, 2011

"My Neurosurgeon Removed My ~ Give-A-Damn Filter"















Thursday, March 31, 2011

The IH (PTC) Creed

The IH (PTC) Creed I promise to accept the fact that I have IH, a neurological disorder which will limit my abilities in my every day life.While I will always have IH, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind. I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner. I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it appears like it already has in my eyes. I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back. I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am in. I will not be sorry for what I don't have, but am thankful for what I do have. I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh. I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right direction. Lastly, I will not ask "Why me?" While IH has weakened my physical body, it has strengthened my heart, my soul, and my spirit.

Friday, March 25, 2011

Surgery # 12 ~ Just 9 days after #11...

Wednesday March 9 2011, I undergo yet another shunt revision.

Jeff drives Tiffany and myself to Rush in Chicago. If your counting this is surgery #12...

A programmable shunt is NORMALLY used as a Brain Shunt. Recently is has been approved to be placed in the abdomen. (So my Neurosurgeon says)  I think they need to go back to the drawing board on that decision. A programmable shunt cannot be secured deep into the fascia, it has to remain close to the skin for it to be programmed by a handheld magnetic device.  So basically it's free floating in the flank area.

I have thought that this shunt has been malfunctioning from the get go... BUT I do not have MD after my name! Maybe soon I'll have PhD after my name, LOL...

This programmable shunt WAS malfunctioning. After surgery Dr. Munoz tells my husband that the shunt was "flipped/turned over". Which I guess supports why it wasn't being programmed properly... I get that it can happen, being that it's not secured down. BUT if it was just flipped over, then the tubing would of closed off on both ends of the shunt.  To view this shunt click the link below.

So at each end of the shunt there is tubing. One side the tubing goes into my spine, the other side drains the fluid to my peritoneum. In my mind, if the shunt is flipped over, that means the tubing is now twisted, on both ends... Makes sense, right? Which means, if it's twisted, then I would be having High Pressure Headaches because it cannot drain any fluid, RIGHT? Apparently not the case, because whatever was happening with that shunt, (Which I KNEW all along was not working right) it was draining ALL of my CSF and causing me to have LOW (hypotension) pressure headaches. ~ I don't know... The whole things just makes me crazy ~

I was kept over night for observation, and discharged from the hospital the next day. It took a few days for me to even feel human again. Not to mention MORE staples, I hadn't even gotten the other staples out yet...

I do love my Neurosurgeon, but this concerns me, alot. When I had my post-op appointment, his explanation was it was flipped over, because it couldn't be anchored, and well... these things happen. I took it out and put in a regular Delta Valve 1.5 and that can be secured deep in the fascia. 
~ I still do not understand WHY it caused the low pressure...

But having a low pressure headache for 6 days has aggravated my Chiari. I have been miserable since the episode. Thank God I don't have the hypotension inside my skull, but if I'm standing up of sitting straight up for too long, my whole head kills, the back of my head where I had the decompression surgery is very painful. This is why it is taking my so long to get these blogs up. I can only sit at the computer for short periods at time, if at all on most days.

I feel I REALLY need to do some research regarding this last incident. It's just is not settling right with me...
After reading my MRI reports since May 2010 (when I came out of remission) I have found that the ventricles in my brain were collapsed then...

I have been trying to write this post for days, and here I am sitting at the computer AGAIN  "thinking too much" I may just have to leave this post, just the way it is.

It's been a long time coming, but I know a change is gonna come!

Monday, March 14, 2011

The house that a Chiarian lives in changes too...

This was written by a Chiarian friend of mine on Facebook, and I could have not said it better myself.  It really hit home for me, as I was in complete tears after reading it.  I felt I had to share this!

With us Chiarians our whole life changes and it is sometimes hard to see out side of ourselves to recognize that it effects the whole house and everyone that is around us. With that being said, I want to talk fist about us Chiarians and how ...much it effects us on a daily level.

Before, during the surgery, and after, we change... We become a shell of what we think people want us to be on the out side, because of course we “don’t look sick” so we must not be. On the inside our whole life has changed and we have to choose- “is this going to be for the better or the worse“? What I mean is are you going to embrace life and enjoy what you have or will you not. Knowing I have Chiari and going through the surgery has changed me. Our bodies are always changing specially after surgery to find the normality it needs for balance. This is the same for us mentally and emotionally.

I was a shell of how everyone else was, are they ok, how can I help them until I couldn’t any more.

My shell shattered, more like exploded after surgery and has never been the same. But I look the same, laugh the same, love the same things... But inside I have changed. I’ve grown and continue to grow but it comes with a price and that price is most of my friends and family don’t get me and understand me at all. I choose to have this as a lesson to work on myself and make “me” better. I don’t have the time to be or do the things others are. So I have a void or one of my friends called it a block in between everyone who has not taken the time to understand, truly understand. I can’t seem to move that block and when I do I’m sure it will be the correct time.

Chiari has not just effected my health but also my friends, my family, the way I was, is not what I am now, and some will never be willing to understand that, and that hurts. Chiari effects where or what I can do, and how long. I miss out on family and friends celebrations if they are to stressful for me or I’m not feeling up to it. It effects everything, and it makes me sad, but I have to be ok with it because I can’t change it. The problem is I feel others have not excepted it. I feel I bore them now, I’m not as fun and it is painful for me to go through.

The house that I live in, the loved ones around me, and the ones that support me are also effected by this. I realized after my surgery I didn’t just have this, but my whole family did... And they suffer too. I don’t know what it’s like to be them, because I’m the Chiarian, but it does push me to try more and seem more normal then I feel or what I really want to do. What I mean by that is most days I want to lay in my bed, but I don’t. I sit on the couch were my husband and daughter can see I’m ok. I apologize more then I ever have before and I wish I could keep up like I once did, but I can’t, so they get what they get, and they seem happy about that.

I know and understand it’s hard, and I wish I had the answer to make all of this easier on everyone. I’ve often thought about saying “you walk in my shoes”, but I would never wish this on anyone. The point in this whole story is we are all effected by Chiari. We all have to choose how we are going to live with it.  At this point the answer is we chiarians are not alone in this, we all go through this, and it is hard. We have to make the choice on what works best for you and your family.

Enjoy what you have, live life to the fullest and understand and except that we might just have to be more creative on our daily life. How do I get though this, how will this affect my children, how will it affect my other half, how will this affect my family and friends, how do I survive living with Chairi. We live everyday with these questions in our mind, we sleep and wake they are still there. We worry ourself’s over and over. How do I, How will it, How……..

How do I get through this-?
It is a very simple answer. One moment at a time, One day at a time. We are exactly where we are supposed to be. In our minds it may not seem fair but it’s what we got. “Now”, this moment, this day. I know you might be looking for a better way but there’s not one. This is what we have and it is accepting that we have Chiari and embracing the day. We can not change that we are who we are. We can’t change that we are Chiarians.

We can change how we get through it.
How will it affect my husband & daughter?
I have been together with my husband for 18 years. My daughter is 16 years old.
The year I was diagnosed and had surgery, were not as hard as after my surgery. 2011, has been the hardest year we have gone through yet, with the IH complications. I think I feel guilt for putting them through this and they are angered, frustrated, overwhelmed,  and they feel helpless. We should accept all of these things. They should too. But it is not that easy. So I go back too the first question and say, “take it one day at a time”. Love them cherish them and be there as much as possible.

How will this affect my family and friends-?
Some will leave and that hurts a lot. Some will stay and the love will grow stronger and it will overwhelm you. Some will still not understand and it will be hard. New/old friends will come into your life and will help in other ways.

After the surgery it was harder for me. For some reason after the surgery is when it set in I have Chiari and my symptoms are still lingering with the IH…  I worried about EVERTHING. Everything was taken from me, my friends, my social life, and my ability to work. Then one day after a very hard week, I stopped. What ever I could not help or fix that was negative; I pushed away because I can’t do it. I am too “sick”
Oh my god I’m sick. So I work on the positive. I fall sometimes, it is not easy but it is worth it. So if I can’t change it, fix it, help it, or correct it, I close my eyes and push it in my mind with my hands... what ever works... but push it away. Worrying turns into negativity, and that turns into someone I don't want to be because it is painful. I always write what ever it is down and when/if it can be fixed or taken care of it will be... but if I can’t today, then I push it away. It’s hard, scary, lonely and overwhelming and and and and and and………………. So just STOP, and push it away, not forever... just for now.
When you can deal with it you will.

Deal with what you can today.

I dedicate this to all my IH & Chiari friends who I know RELATE!!!  Because we are now FAMILY!


Saturday, March 12, 2011

Surgery #11 on RRD Feb.28 2011

We ~ Jeff, Tiffany and myself ~ arrive at Rush University Medical Center in Chicago, Il at 5am Monday Feb.28th for my 11th surgery.  Today is Rare Disease Day and I have an article in both of my local newspapers TODAY! And I'm having surgery again!

Today's surgery is to correct the tubing from my shunt into my peritoneum.  Apparently the surgeon didn't put in enough of a lead and it pulled out of the peritoneum, and is draining into my fatty tissue where it is just collecting. 
When I had my first post-op appt after the surgery I had mentioned that my abdomen felt "weird" especially after I ate. They sent me for an ultrasound that I had done a few days later on Feb 12th. Buy that time I had started to get a small lump around the incision. The ultrasound tech confirmed the fluid in there, but the radiologist could not confirm what it was, or why... So my Neurosurgeon sent me for an abdominal CT-Scan. I had that done on Feb 17th. By this time, I now have a huge sac of fluid 6x4x4 mass of CSF that is not being absorbed in the fatty tissue, it's just collecting there.

I get the results of the scan, the Neurosurgeon wants to SEE the scan because the radiologist again cannot confirm what it is, and WHERE the catheter tip is on the written report... Is it in the peritoneum and there is a leak? Or is it not even in the peritoneum? They ask me to overnight the scan with the results, so I do.
On Feb 23rd, they tell me I need surgery to correct the catheter, It is NOT in the peritoneum...

My surgery was scheduled for 7:15am. On Feb 28th. The surgery itself went well.  The catheter tip was indeed outside of the peritoneum, and he put in extra tubing so that wouldn't happen again! All went well, I was out of recovery and into my room around 1pm. Jeff and Tiffany stayed with me for a few hours, then headed home before the rush hour traffic started.

I was discharged from the hospital on March 1st. I felt pretty good, I was really sore, but overall felt good!


On Thursday morning I sat at the computer for about an hour, going thru about 4 days worth of e-mails, and catching up on Facebook, while having my breakfast & coffee. My head hurt, but not the usual hurt... I finished up on the computer and went downstairs to watch some TV and take it easy.

I didn't feel very well, and just figured my shunt was actually functioning now, so maybe I just needed time to adjust... Didn't really think it was anything other than that.

That evening, I didn't eat dinner until almost 7:30 or 8 o'clock.  I was so nauseous, i couldn't eat and my head was screaming so bad that I went to bed early. Thought I may have takin my pain meds without having enough food in my system, and it was making me sick. I went to bed with an ice pack, a cold washcloth, and a garbage can next to my bed!

The next day, Friday, I felt fine! I got up before Tiffany left for school, we talked a little before she left, I had my breakfast & coffee while checking my e-mails and Facebook... Then all of a sudden I started to get this weird pain up my spine, gripping pain in the back of my head, and I started throwing up.  What the heck just happened? I thought to myself... I didn't even shut the computer off... I grabbed another icepack, and went to lay down in bed.

After sleeping for about an hour, I felt better.  I went downstairs to watch some TV, and my head started to hurt again... So I just laid down on the couch, and I felt better.  Then I got up to heat up some soup from the night before (the dinner I couldn't eat) ate the soup, and had that same overwhelming feeling up my spine again, gripping pain in the back of my head, and I run to the bathroom to throw up! Then I go straight to my bed to lay down, and I am completely dumbfounded as to what the hell is going on. I laid there for a few minutes and it dawned on me that I was having LOW PRESSURE HEADACHES!!!

The Nurse Practitioner that works with Dr Munoz is off on Fridays, but I call up there anyway to make an appointment for Monday, March 7th. to get the shunt valve adjusted...

When my shunt was put in, the tubing pulled out of the peritoneum, and I had that shunt valve adjusted 2x's while it was not working properly... Now the shunt is draining where it is supposed to be, and it's draining too much fluid!!! FYI ~ A low pressure headache is 100x's worse than a high pressure headache!!! I realized that if I wasn't laying down, I was throwing up! So from Thursday night to Monday afternoon, I was on my back, or side, laying down on the couch or my bed.  It is very hard to remain laying down like that! ALL of my joints were killing me. Everything was sore and stiff... But there wasn't anything I could do about it!

Finally Monday comes, and we drive to Chicago. Now remind you I cannot sit up! Jeff drove, and I sat in the front seat, but with the seat laying all the way back.  Now let me also remind you how horrible of a passenger I am... I have horrible anxiety driving to Chicago... I had an icepack on my head, a pillow under my head, and on top of my abdomen because I still have staples from my surgery on Feb 28th, so I use a pillow for seat belt protection, and I have a cold washcloth over my eyes so I cannot see anything! I trust Jeff he's a really great driver, I just have anxiety! I was proud, I didn't freak out at all! And I made it the whole way without feeling like I had to sit up and "see" That's HUGE for me!!!

It's a very long walk from the parking garage to the Dr's office. A very long walk, one I was sure I could not make with this low pressure headache! After all my surgeries... this is the first time I had to use a wheelchair!

Robyn, Dr Munoz's nurse practitioner came in the room, and I explained what I thought was going on. She agreed and seeing me in so much pain hurried and got the magnetic device to change the setting on the valve. She has a hard time at first getting it to register. Then it does, but it's NOT set at the number it was last programmed to...??? We were kinda freaked out about that! When did it change, and how did it change? It took 3 people and 1.5 hours to program my shunt valve!!! CRAZY!!! I was completely miserable, not to mention confused by what the hell was going on with this shunt! The number it was set at, at my last appointment was 1.0. Today's appointment it was at 1.5. Even at 1.5 I should NOT have low pressure headaches! It took Robyn, another nurse & the help of my husband to program the shunt to 2.5... Which is a crazy high number for me, I'm comfortable around 1.0 to .5... Robyn tells me it's set at 2.5, and that's all she can do right now to get some fluid to build back up in my system, and that she will talk to Dr Munoz on Tuesday morning, and call me...


I've suspected it since my very first post-op appointment! Tuesday Robyn calls, I tell her that NOTHING has changed, it's been almost 24 hours, and I feel exactly the way i did over the weekend!

Tuesday afternoon, Robyn calls me back...
Dr Munoz wants me to have surgery the next day to have it replaced!