Well I already see a NL, he does ok for pain management. I take topamax and occasionally use imitrex for migraines.
I have hit and miss days of pain. I struggle with neck pain the most. Lately neck, shoulders and just the left arm is getting weak. Some days my arm is fine and others I'm unable to hold on to things. All of this really triggers the headaches. I had decompression Nov of 09 and I think it was summer 2010 that eye pressure started to be a issue. It's not got better, worse. My ears have pressure as well.
So I submitted info to Wi chiari center, now I'm doubting myself in doing this. I've already had surgery so I don't know what "miracles" I'm expecting. I read so many fellow post Chiarians dealing with just about the same issues.
I guess am I'm asking, do I waste the time and money to go up there? Or do I go to give myself some piece of mind that everything is okay?
I say go! It never hurts to get a doctor's opinion! If you are like me I worry about aches and pains until I know what causes them, knowing seems to help me a bit!
Thanks, I guess it would be comforting to see an actually Chiari specialist. Iām sure he will not say its all migraines and shove me out the door. It would be nice to know what is what.
Hi Jen, I have the exact same problem! I was decompressed in Oct 2010 and had a car accident 9 weeks after surgery. I have been having more and more problems/pains and symptoms than I had before the surgery and they have gotten worse. I just submitted my info to the WI Chiari Center too. I want them to find something so that they can fix it but then again, I don't so I don't have to go through any more "tests". I have been to every doctor under the sun! It took me months to actually contact the chiari center because on a rare day I will feel ok. I have daily pressure headaches and sharp pains, a bunch of nerve pain all over and I have to take pain meds every night. I also take Gabapentin (Neurontin) and Cymbalta. The Cymbalta has helped with the headaches/pains although it has killed my appetite. Do you have an appointment yet? I have never actually seen a Chiari specialist and that is one reason I want to go. I get "you are a very complicated case" ALOT but noone seems to know what to do with me.
I've been on the phone with them and then got a email. I was making sure my insurance was a go as well. I submitted that form and now they are asking for my most recent MRI.
Sadly I can't remember when and where that was! Oh geez, how bad is that? My NL should know, I'd think. LOL
I had an injury with heavy lifting and can't remember if they did CT or MRI??
I'll let you know when I get a appointment! I'd really like to know how it goes for you, I assuming you'll be posting that right? I hear good things about them!!
There are wonderful NS at Chiari Centers, but please remember there are also amazing Chiari Experienced NS not in Chiari Centers. I am not trying to confuse you Jen. I was just sent to be best NS in the US.( I had a Cranial Nerve Disorder that I was first diagnosed with) I know people probably roll their eyes when I say that....but it's true...he developed most current neurosurgical techniques, has done 100's of studies for the NIH, lectures all over the World & has been the World's expert in Trigeminal Neuralgia & it's treatments. Not everyone can afford to get to the Chiari Centers. I know there are ways to get it paid for, but many are not educated on all the organizations that help in these situations. In my situation I was driving & called by my NS & told to get to Pittsburgh ASAP or I would be a quagripledgic. I knew nothing about Chiari or what it meant. I had just complained at a check up for my cranial nerve disorder & had some xrays and a cervical MRI. The reason I am saying all of this is to educate Members. I think Chiari Centers are great for many reasons....Treatment & Research are the most important. I am sure they will help you & will be praying for that to happen.