I will give the short version of a long story. 1 year ago went to ER with what we thought was a stroke. Then they said a TIA or mini stroke - one side of body went numb, couldn't speak, confused, dizzy, throwing up, severe severe head pain. No one was sure what it was, maybe migraines - go home.
Since that time I have been getting progressively worse all the way around. I cant remember basic functions some days, my balance is a mess, horrible pain and throbbing on the side and back of my neck just on one side, constant numbness and tingling of hands, arms and sometimes feet. sever pressure in head and back, headaches...on and on. When I lost all feeling in my right arm 1 month ago I called my Dr. Had MRI of brain - came back 7mm, Chiari malformation. Had spine MRI yesterday - didn't see a syrinx. That's great news. My primary wanted me to see a pain specialist to come up with a medication mix to fight the pain. Then she said a neurosurgeon. I called 3 neurosurgeons in my area - 1 went down my symptoms like a check list and exact words were yes, your classic case. The next one didn't ask any symptoms and got me in in one week. The last one asked my symptoms then told me I probably did not have a Chiari, those symptoms were not symptoms of this condition and I need to see someone for fibromyalgia. All of this, just one the phone.
My general Dr. offered to give me an RX for Vicodin and an antidepressant and call it a day. I do not want to live like that. Never been on anything in my life.
I DO NOT want to spend my life on medications for this just to find out 2 years down the road that I am worse off than I am now. IS this normal for this condition? DO people just not get what it is? If I can avoid surgery by all means I will, just want options.
I am so frustrated. Should I see a neurologist instead of a neurosurgeon? I want someone who has dealt with this before - I am so confused. They make me feel like it is all in my head.
Your choice is really surgery, or medicine to mask the pain. The longer you wait on surgery, the more permanent damage can be done. Given the choice of the three surgeons, I would try and see the first. That one at least seems to know what they are talking about with regards to Chiari.
But, yes, basically you get doctors that know a lot and you get doctors that know nothing. Sometimes you will get a good doctor that doesn't know much but is actually willing to listen. I had a bad experience with a neurologist and if it was me and I had to do it all over again, I'd go straight to the neurosurgeon.
Only you can decide what to do. Be prepared to be your biggest (and sometimes only) advocate. You will sometimes have to force your doctors to listen to you. You will lose friends, and maybe family.
I do not wish this on my worst enemy. This will be a long, hard ride. There is no cure. The surgery is just a fix to stop the progression. Some have to have additional surgeries later. Some don't.
The best thing I ever did, before my surgery (it was just in June) was get a book called Conquer Chiari - A Patients Guide. It was wonderful. It explained so much and was so helpful in this journey.
Twinmom, yes this is normal for this condition. Finding a qualified surgeon can be a chore. Finding an NL who has a reasonable grasp on Chiari is so much harder than finding a NS. If you want to give meds a try you may want see an NL, though, as that is their primary skill with chiarians -writing a script for “migrain.” You should see a qualified NS too, even if you decide against having a surgery. You need to know what’s really going on with your brain, spinal cord, neck, and vessels. Please research dysautonomia, EDS/hypermobility, and cranial cervical instability. Also research the different types of decompression surgery. For some people a surgery halts progression of symptoms, some people it vastly improves symptoms, others it makes worse. It’s my opinion, though, that for the people who stay the same or get worse, there is still an issue that needs fixing; needs a duraplasty, needs a cranio cervical fusion, needs TC surgery, a plate to the back of the skull, etc…
The good news is that you’re not alone, and you can benefit from the trial and error of others on this site. I believe that getting informed (and I mean well versed!)about Chiari and the other conditions that come along with it will allow us to weed out the bad doctors and guide the direction of our treatment. Stay strong and stay in touch!
I would suggest seeing a neurologist first and then going from there. I have a team of doctors that work with my case. They are all extremely familiar with chiari and one of them is a well known researcher and advocate for us. Every single one has said they only recommend surgery if it’s absolutely necessary because it is a dangerous surgery and there is no guarantee that you will improve. I had the surgery March 2011, 6 months after becoming symptomatic, because I had developed a syrinx and the CSF flow had severely decreased in my brain. It did nothing for me. Not even reduce the size of my syrinx. It’s actually gotten bigger since. If you don’t want to be on meds then you could look into alternative methods as crazy as it sounds. Western medicine has basically failed me when it comes to chiari so I do acupuncture for the migraines and fatigue now. I went to pain rehab where they taught me how to do relaxation and breathing techniques that help a lot. Even yoga and meditation can help some. Herbal teas like black pu-erh can help too. A lot of doctors have absolutely no idea what we’re talking about so do a lot of research so you can fully know what’s going on and that you chose the right treatment. Everything will work out for the best. Good luck!!
Here is a short update. I saw a neurosurgeon last week. Told me yes I have Chiari but he doesn't believe it is causing me any trouble. He believes I am having complex migraines. He stated the surgery does not help symptoms 90% of the time but after we exhaust all medicines and all other options/tests we can re-visit. I do not have a headache daily but daily I have severe pain in the side of my neck and into my back, dizziness, vision issues, etc. when I bend over for any reason I have to get up slowly or my brain wants to explode. Now, some days I have all of this and a terrible headache. I am having trouble dropping things, being able to think through normal processes and ear issues. I have an appt. with a 2nd neurosurgeon late December and in the meantime will meet with a neurologist. I am ok trying medication but as I told him I do not want to spend years masking the problem with drugs only to lose years of my life because no Dr. thinks this is an issue. If drugs help - great. I do not want surgery but I want to feel better. Any thoughts on the migraine thing?
Twin mom,agreed 90% unsuccessful is not in line with other NS but glad he was honest with you about his success rate. Have you had a c-spine mri to rule out any pathology in your neck, rule out a syrinx? Do you have EDS and or CRANIO cervical instabiliy? I’m glad you are getting a second opinion, get as many as it takes to find the absolute best.
i had a day like that as well it was scary and the dr called it an over dose,possible tia, it was not an over dose but whatever. i have had two other major days like this i got " its a headache" as well. Why is it that doctors don't seem to know about this however there are quit a few people being affected by this. I am amazed by this.