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!!!
I DID NOT WANT TO GO BACK ON THAT MEDICATION!!!
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.
~ ALL WAS GOING WELL!!
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!!!
LOL...
~ 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!!!
Saturday, July 2, 2011
Friday, June 10, 2011
Chiari and other related conditions - Angels
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"THIS IS HOW SERIOUS IH/PTC & CHIARI REALLY IS"
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” VierowLakeland, MinnesotaNovember 6, 2008Founder 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.
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, MichiganMay 16, 2011She 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, TexasMay 20, 2011Lost 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, CanadaMay 23, 2011Columbus, OhioMay 27, 2011She 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.
http://www.caringbridge.org/visit/shannonterry
Barbara Mostow Goldenhersh{EDS}
Belleville, Illinois
June 10, 2011
Passed from complications from a blood clot in her interior jugular vein
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.
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.
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.
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.
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)
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.
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
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.
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.
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.
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.
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
Irving, Texas
November 27, 2010
Nahtyia Pennington {IH}
December 30, 2010
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.
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}
Michelle MacDonald {Hydrocephalus}
Oshawa, Ontario, Canada
May 23, 2011
Columbus, Ohio
May 27, 2011
She passed away due to complications during her 5th decompression surgery.
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.
http://www.caringbridge.org/visit/shannonterry
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!
CONTENTS UNDER PRESSURE
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.
CONTENTS UNDER PRESSURE
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.
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...
Tuesday, April 12, 2011
Results of Lundbeck's Donation of $10,000 to NORD for Raise Your Hand!
Rare Disease Day Partner
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.)
THANK YOU TO ALL MY FRIENDS & FAMILY WHO CLICKED ON THE LINK!
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