I saw Dr R today for the best neurological examination I have experienced so far. It was clear right away I was not passing some of the tests but thats why Im there. He poked and bent and pushed and found my left side much weaker than my right, but I am also weak all over. Ive been told by friends I just need more exercise, but I assure you this was neurological. He even said that for some reason patients with what I have tend to be weaker on the left side for some reason. We did some walking and its clear I would not pass a sobriety test, and I dont even drink. He noticed my pupil size was off, and that I cant follow well with my eyes... I will wait for the report to really understand that. He did say that these things are why I cant read anymore, driving is difficult and even watching movies with too much stimulus just makes me worse. I got dressed and moved to the conference room where he was putting up my scans. First he showed me my two syrinx which were kind of the least of his concern. He thinks they will clear up once we get proper flow again in my spinal column. He then showed me a birth defect.... My c-1 vertebrae is supposed to be shaped like a doughnut... A full circle when you look down on it... Mine was not a full circle... It was missing at least half of the circle. Im unclear if theres anything he will do about that... I think he said he might take off the sharp part of the bone (cant remember for sure) then he went in to what he says I have likely had my whole life.... He did the normal lecture on how most doctors measure chiari on a one dimensional plane... And how the brain is NOT one dimensional so its not ever accurate. He took scans and what not from every angle and I could see why. He showed me that since birth and the forming of my skull and brain there has not been enough room for my brain to spread out properly. My body has adapted well but at a certain point the body says enough is enough. When I asked the question well why now... Why not ten years ago he explained it like wearing shoes too small for your feet... Its ok for a while... You adapt... But there eventually comes a point where your feet say no more because your feet are all deformed and Im pain. Really a good analogy when he explained to me that because of my too small skull my cerebral tonsils went the only places they could... They tightly wrapped themselves around my brain stem (which controls almost everything in my body) and it has caused my brain stem to be twisted cutting off the flow from my brain down my spine. This has likely caused to two cysts (syrinx) as well as every single neurological problem Ive been experiencing. He noted my flat feet and also said sometimes it can cause that too. He believes that he can open up the back of my brain... Cauterize the cerebral tonsils so they are not pinching my brain stem to death and then free up some space in a couple other locations that he said he needs to remove some bone. He says theres a place down a little further (I want to say c-7 but I cant remember for sure) that needs more room for my spinal cord to pass through. I have mild scoliosis (in the form of a hunch back sort of) but thats not something he can fix. More things discussed was my postural orthostatic tachycardia and how its causing me to be bed bound. I turn grey when I get up, sit up or stand up because of the improper flow to my brain and head. He has about a 85% success rate of this surgery fixing that... But it will at least help it no matter what. When I did the tilt table test on Tuesday e doctor was kind and it was very positive. Dr. R went on today to say those tests cant be faked. The doctor who did the test was pretty impressed I didnt pass out with how low my blood pressure dropped and how grey I turned from lack of blood flow. Dr. R says that often people with my complexion come out of surgery bright pink or red because its been so long since we have had blood flow up there. In my case he seemed to imply it was pretty bad because on two occasions he mentioned how grey I was just sitting there. No wonder I need to be laying down all the time. A couple unexpected things were discussed that I wasnt ready for...later... Possibly years and years from now I may need some repeat surgeries. He said so,etching about my ventricles being too big for my age. This means I have too much spinal fluid in my head. He suggested I get off any medications that could increase my spinal fluid in my brain. He said a shunt at some point may need to be put in to drain off fluid but its not at that point right now. He also mentioned that I have degenerative disk disease and its possible I may need something fused later on. Right now Im ok... But to keep an eye on it. We discussed how Ive been getting worse by the week and am home bound now and not able to do anything of use. I asked if surgery should be put off and he suggested no because Im going to continue to get worse. He said sometimes this isnt life threatening... But sometimes the pain causes someone to commit suicide and sometimes we just stop breathing because the brain stem controls our blood pressure, breathing, heart beat, temperature, you name it. So in my case... I want to be there for my husband and girls so this is a no question surgery. Recovery could be rough, some people think its a breeze... It depends from person to person. Because of everything I have the absence of a gag reflex.. He said its common with brain stem compression but I will need to learn to swallow again after surgery and I my do a lot of gagging. He gave me a lot of ideas on what I might expect and it didnt sound fun, but Im going to be as strong as I can. Ive scheduled my surgery for September 24th and Ill need to get here a few days early for pre op. Im fortunate to have Medicare who wont probably blink an eye at this surgery. Im on a wait list so if something much sooner comes up I will see if I can make it. Summer would be so much better while Claire is out of school... But it may not happen that way. Ive been taking things one day at a time and I will continue to do so. I was happy to hear when it does come to surgery the doctor wont leave my side until Im fully awake and able to do commands and talk with him. Not many doctors are like that. I believe in him, I believe I met him so that I could have Him help restore my life. Im overwhelmed and emotional. It gets very real suddenly when you see pictures and an expert finally sees the problems when every other neurosurgeon has dismissed me. Thank you for all your thoughts and prayers on this trip, I think I finally have answers and someone to help. I just want a semi normal life back! Christina did I forget anything??Jenny Rasmussen Beth Kendall Christina Rasmussen Ryan Van Riper Colette Gressel Moore Caitlin Moore
Posted on: Thu, 26 Jun 2014 23:09:48 +0000
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