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!!!!!!
I missed this post and just saw it and wanted to respond. Sounds like your dealing with alot!! I'm really sorry that you've had to deal with so much at such a young age.
I am new to chiari. Though Ive been declining for several years, I was only diagnosed in April. Its definately a challenge daily and some days we cope better than others. I have been med free at this point but its taking its toll on me as well and am concidering seeking out a PM clinic. Sorry I can't offer more advice on this issue but my stubborness has made me believe I could fight this alone med free. I'm quickly learning that if I want any quality of life at this point, I'm going to have to do something.
As far as knowing if things will improve, thats so individual. I think the only thing that keeps me going is to focus on the possitive things in my life. My family is my world and I put my energy in that these days. I try not to stress on the things I cant change. But I do have my days, trust me!!
We all have days of frustration and on those days, use the boards to get it all out. Luckily you have a supportive husband but sometimes its nice to have a place to go where people really get it. Don't oppologize here for whining. This is the place to do it!! And I'm here if you need to vent.
Sorry I can't offer more than my support but know that your not alone!! I know EXACTLY how your feeling!!
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.
Thanks so much for your replies!! There are days when just being able to talk/vent to people who understand exactly what you are going through really does help!
I went to the PCP today and had to have a suspicious skin area removed to be tested for skin cancer as well. Got 5 pretty stitches in my shoulder for that one! The sad thing is that I am not really worried about it that much, my concern is the Chiari and my spine surgery that they want to do.
I am very fortunate that my step-mom is a nurse (in PA) and my uncle is a VP at a hospital in Pittsburgh, PA; he got me in last month with a neurosurgeon named Dr Whiting and he is ranked number 1 on the east coast for spinal surgeries and in the top 3 in the country; he is also very educated about Chiari; but luckily the tumor is on the lower spine. My concern is that I have had 4 CSF leaks since my surgery. They where all sudomenigious (spelling) leaks so the where able to heal without a shunt placement. I have heard horror stories about shunts. I worry that any messing with the spinal area will mess with my pressure again. My last 3 epidurals caused me a lot of problems and I will not allow my local neurologist to do them again. Plus they are not fun to have.
Has anyone had a tumor and scar tissue removed from the spine? How did it go?
I will be traveling from NC to PA if I decide to have this surgery. I do not mind the travel at all since my Chiari Neuro is in FL where my husband and I just moved from. But I wonder if travel will make it harder on the return trip if I have the surgery.
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) 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!!