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...