Saw my NL again yesterday and, again, he wants to treat me for Migraines. He said my MRI looks good except for the herniation, but that he doesn't believe it's big enough to be causing any of my problems. He said he didn't understand why I was upset and that he's only short with me because he's used to dealing with patients that have "serious problems". Anyway, he wants me to try Topomax for a few months to see if it helps before he'll order a CINE MRI. So...I'm just checking in to see if anyone else takes it.
I've been trying to get a new NL, but we come from a small area and it seems like the waiting list for new patients anywhere in driving distance is 8-12 weeks. I'm so frustrated and just not sure what to do at this point. Any advice would sure help! Thank you! :-)
Do you see a specialist for it? I would definitely get another opinion. You should look up the chiari institute in long island New York. I know people sometimes find things they don't like because of the suit that happened but I personally loved my experience there. The doctors are so wonderful. They are very knowledgeable and caring. I was decompressed there in October and they took care of everything. They will do their own MRI's and may find other things linked with chiari that you may not even know about. It turned out I had eds, syringomyelia, and a retro flexed odontiod on top of the herniation which can cause even more problems. A second opinion is always the way to go. I talked to four neurosurgeons before I found the right place.
Topomax works pretty well if your headaches are migraines but if they are due to impaired CSF flow, as mine were, it does not help that much. It also has very tolerable side effects. There are holistic remedies that address chronic inflammation and might break the pain cycle if you stick with them long enough. Those being researched or recently studied are: Quercitin/Bromilian; White Willow Bark Extract; and Turmeric (the spice in a capsule). It is believed that these herbs reduce the production of pro-inflammatory cytokines in the pain cycle. However, there have not been many peer reviewed studies that confirm this. Hang in there ... it takes a long time to get into see a neurologist and a really long time to get in to see a good one. Take care, Fr. D
I took Topomax and had to stop it due to side effects.
Now, let me see if I have this right...your NL says that all is well except for the herniation and will not order a CINE MRI until you have tried the new med??
Have you had a full spine MRI to make sure you do not have a syrinx??? Has this NL suggested you at least get an evaluation from a NS????
With your insurance , do you need a referral to see a NS?? If no, you do not need a referral..it may be wise to see a NS just to get input from someone who may be more educated in Chiari than your current NL. And if you do need a referral..can you ask this NL to do so? And if he will not refer you..can you see if your primary would make the referral??
I am a bit put off by this NL....when he said he is used to dealing with patients with 'serious problems'....what the heck? Is it just me or is this doc a bit insensitive concerning YOUR pain??
Rosebud, this only my 2 cents....Hope I didn't over-step my bounds here. Please keep us updated.
Thanks for the feeback! I saw a NS a few months ago, but he said my symptoms were A-Typical of Chiari because my symptoms are on one side of my body. (My right side). He also said it can't be Chiari because I don't get a sharp pain in my head when I sneeze. He wasn't much interested in hearing anything else I had to say and glanced at my MRI, but told me to get in touch with a good NL and get started with some meds. I've been trying to get in at UC Davis here in CA, but the wait is 10 weeks. That's why I decided to go back to my original NL yesterday because I was feeling so badly and figured he was better than no one. I guess not! I don't need a diagnosis of Chiari to feel validated. I just need someone to tell me what's going on and what I can do to fix it. I never get a sharp stabbing feeling in my head. It's always more of a burning/pressure feeling in the right side of my neck and the base of my skull on the right side that tends to strap up over my head. I also get a huge amount of pressure behind my right eye. When this happens, the side of my face also gets a "numb" feeling in the inside. I can still feel it if I touch my face, but it just feels numb inside. My heart races, my motor skills in my right hand are affected and sometimes I struggle with leg weakness. (Usually my groin and hip area hurt really badly). I've always been an athletic person and have always played with my three sons. But something happened in November that changed everything and I just can't figure it out. I didn't have any accidents, falls, or sicknesses. I was driving with my kids one day and felt like something just "happened" in my head and I thought I was having a stroke. It's SO unnerving and I just want it gone! My NL said he'd order a spine MRI and a CINE MRI in a couple of months if the Topomax doesn't fix it. Per his suggestions I've already tried alergy medicine, antibiotics, steroids, and Imitrex. Today he suggested a combination of Topomax and Fioricet. I'm so tired of taking stuff only to have it not work. Hopefully I'll have better luck this time. Thanks for all of your suggestions! I really do appreciate them.
I’ve taken topomax and every drug they could give me to the highest dose. Nothing worked, personally I believe meds just mask your symptoms and they don’t treat them. doctors don’t really look for the real problem. and I had the same issue with the neurosurgeon I went to! My MRI didn’t show I had Chiari but my nodes were abnormally low. so he basically said I didn’t have anything wrong at all and it’s all in my head! but then I got a standing up MRI and it showed I had Chiari. I’m going to a different doctor now, because the one I saw was just rude and wouldn’t listen to what I had to say. You really need to see someone who knows what they’re talking about and is good. I’ll be undergoing surgery though due to my severe symptoms. I don’t get a sharp pain when sneezing either, everyone is different. Just because you don’t doesn’t mean you don’t have Chiari. It could be in the beginning stages like mine. I recommend seeing Dr. Fraser Henderson in Maryland. I hear nothing but good things about him! Good luck!
My daughter had no relief from any med, including Topomax. She went through all kinds of therapies and silly treatments. The only thing that really seemed to be of any use was Biofeedback. Learning to lower her blood pressure, heart rate and such while in extreme pain. Not that it eased said pain at all though. After couple of awful years and many docs, her final NS told her that smaller malformations can sometimes cause huge issues while larger ones may lead to no symptoms at all. It's not about size! Too, she didn't have "classic" Chairi headache brought on by sneezing or strain for the first year so everybody said the pain was "wrong"...hers was a 24/7, 9 outta 10 headache. Again, this final NS said around 80% of his Chairi patients do have that textbook type of pain. 20% of those he sees have pain that manifests differently! So her pain was not necessarily "wrong" at all!
After loosing all hope, we finally found a great NS who knows CM. He's the go-to guy here in the Pacific NW. He did her decompression surgery in November and she has made AMAZING progress. She's back to LOVING life now vs. barely being able to go through the motions.