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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi everyone, this is my first post here. I am 28 years old and have a wonderful (lol) medical history. I was diagnosed with Arnold Chiari Malformation when I was 18; and by the time I was 23 was also diagnosed with degenerative disc disease, multiple herniated discs, bulging discs and Vonn Wildebrand's Disease (blood disorder). Last month I just meet with another surgeon because they found a non cancerous tumor on my spine and a pars vertebra fracture. I can not longer function like I use too. I have 8 surgeries for multiple things; one being my craniectomy for the Chiari. Now, I face having another surgery on my spine. I do not mean to sound so depressing but this is getting so old! I am tired of being in pain and constantly being on medication. Several times I have stopped all my pain medications (Soma, Avinza, Percocet) and feel worse. :( I knew that would happen but I wanted to make sure that the pain was real and just not the medication, does this sound weird?
The Dr put me on Lexapro to help with the depression and that has seemed to helped a lot. I know that there are a lot of people on this site that face the same things daily, and what I want to know is, will this get better? There are days that I just stay in bed and don't want to move. I am afraid that this is what the rest of my life will be like. I thank everyday for my husband! I am sorry if I sound like I am whining.
Also, have any of you had any luck with pain management Dr's? I am considering going to one. In the last 2 years I have been on over 43 different medications and the ones I am on right know work the best; but I still have problems. I know that I will never be pain free; but I want to know that I can leave the house and not have to remember if I grabbed my medications.
Thanks in advance!!!!!!
Niki
Hi Niki,

I pretty much could have written your post. I have Arnold Chiari Malformation too, plus a whole list of other diagnoses. I have degenerative disc disease, diverticulitis, a pinched nerve in my back, and now I'm pretty sure I have fibromyalgia. Now I'm dealing with the ACM again because my surgeon did an overly agressive decompression and I now have cerebellar slumping.

I don't go to a pain management Dr simply because my neuro gives me anything I need. I currently take Cymbalta, Diamox, and Vicodin when needed(which has been pretty much every day recently)

You will have good days and bad days. I know I never expected my life to be like this! I'm only 38 and I have a 4 year old, and it's so sad when she asks "Mommy do you have another headache?" On my good days I play like a crazy woman with her and on my bad days, we sit quietly and watch movies or watch tv. It's so very frustrating to admit your limitations, but I guess after 10 years of dealing with the ACM, I know what I can and can't do. I know my husband gets frustrated too, but I've learned I have to listen to my body instead of him.

Welcome to the board!

Tina
Hi Niki~

I' really sorry you had to have another issue to worry about right now. Be optomistic that the tissue they tested will be fine. But the good news is it sounds like you've gotton your hands on a great neurosurgeon!! That gives you peace of mind, for sure, knowing he's number 1 in the east coast AND he's versed in chiari is a big plus!! I'm really happy for you.

As far as traveling goes, I had spinal surgery in April and my trip home was 4 hours. I thought it would be horrible but in all honesty, I did fine. I took my pain meds right before I left so I slept a good portion of my trip. (of couse I always travel wit a big fluffy feather pillow:D) And stopped along the way to stretch out and had lunch. I'm not sure of your travel time but I'm sure you'll be fine!!

Take care~

Cindy





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