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New member
Sep 2, 2008
Friend was DX
Green Bay
First of all let me tell you I am writing about my wife.
After months of tests...seeing doctors = today we were told that she as Anterior Horn Cell Disease or one of them. Is this just a nice way of saying you have ALS? Everything I look at so far leads me back to ALS.
Let me give you a little history here on my wife. When she was 16 she was diagnosed with Scolliosis - a double "S" curve. She had the Harrington Rod put in her back from the base of her skull to the base of her spine. After months of recovery she did extremely well for many years. A lttile bit of pain but no real noticable problems.
After the birth of our son some 12 years later - it was discovered that her back had shifted and she needed another operation. This time they removed the the original bar and placed three other bars in there to tie everything together so it wouldn't move. They also installed a type of spring to help her stay upright and not walk leaning forward.
Then in 2008 she noticed she was having difficulty walking on grass or uneven surfaces. It took several months of doctors visits - and finally a referral to UW Madison - to discover that she had Arnold Chiari Malformation. They performed an operation to relieve the blockage which was causing the spinal fluid to build up. There was some damage already done to nerves by then but the operation did relieve most of the problems.
(really I am not making this up....this has all happened to her...and she keeps going)
Then in December we took a family trip to Florida. While we were there we noticed that the was having difficulty walking. When we got back this continued to get worse. We went and seen several doctors. Neurologist, Neurosurgen, GP, Neuromuscular doctors. We were first told this was Neuropothy - then it was said that she had something attacking her nerves but we didn't know what it was.
After several EMG's which were inconclusive - we were finally sent to UW Hospital in Madison, WI. She seen the doctor who did her Chiari operation and he said that "ALL" the operations are doing what they are suppose to be it has to be something not related to the scolliosis, or Chiari. He referred us to another doctor who is a specialist in doing and reading the EMG's. We have had several MRI's CT scans- but with all the hardware in her back they can't get a clear picture of the spine.
He did another EMG on Friday and today let her know that she has a disease that is related to the Anterior Horn Cells. Then the nurse called and said that she has a disease in the Anterior Horn Cell family. Well all I can find are articles that lead me back to ALS.
I should state that things have progressed to the point where she has no movement in her legs. If not for sure will of this tiny woman she would be in a wheel chair and not just using a walker. While using her walker she literally pulls her legs...she has very little strength in her legs. Her arms and hands are starting to get a little weaker but for now are okay. Her most recent pain is a sharp shooting pain starting in her groin and moving down the leg. Out of all the things she has going on.....this is the first pain I have seen bring tears to her eyes.
Any ideas for what might be going on would be greatly appreciated. Also thank you for listening to me vent. If there are any ideas of what I can do to help make things more comfortable please let me know.
I am a little nervous and a bit concerned.
Thanks Again...
SMA is an anterior horn cell disease and it seems to me that it is due to all the messed up surgeries she has had done on her back! Arnold Chiari Malformation is something one is born with, they would have known that when they did her MRI for her first rod. It can appear anywhere from birth to adoloscense. It can also be caused by a tumor. If she does not have a tumor it was caused by her rod/ or surgery. They did something and it affected her spine and i pray that it is not SMA. Usually this is inherited but if you have your spine compressed long enough it will cause it. You already know it was compressed because of the build up of fluid. My very first MRI showed tonsillar herniation 4mm, in my paperwork the doc wrote Arnold Chiari malformation not worried as she is passed the growing stage. In other words spinal tethering could occur with that. Look up spinal tethering....... Anyways, i did not have the herniation in my next MRI at a University Hospital so i have no clue why my brain herniated! My docs cant stand me, one test says one thing and the next is fine.... Anyways, good luck with your wife, and get ALL her medical records! Best Wishes, Sammantha
thank you

They didn't have the MRI's when she had her firs surgery. That was done back in 1972. Actually the doctor back then had never put a rod in she was the first.
I will look up SMA - thank you for your info....I really appreciate it. She has had a lot of I said ...she is a tough lady....
Thanks again...
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