I will try to make a long story short. I had my decompression surgery in November 2013. My headaches were few and far between and I thought I finally saw a light at the end of the tunnel. Then in June of last year, I had a horrible headache that lasted about 4 days, drove me back to my primary (my insurance requires these steps) I fell over in the balance test without even closing my eyes and he ordered another MRI and sent me back to the neurologist. MRI still showed 5mm herniation and he said “oh, so you didn’t have decompression after all?”, said I had migraines and has been switching me around on different migraine medications. Nothing works because, quite frankly, I don’t have migraines. I still get headaches a few times a month, nothing as bad as they were before decompression but they still last several days. They are at the base of my skull where the herniation is located. The only medication that eliminates the pain is 10mg hydro condone that I have left over from my surgery. He won’t refill my prescription but instead has put me on topomax which I take every day (I told him I would be ok with just getting 4 pills per month of the hydrocodone just to get through the headaches). The topomax causes tingling in my face, feet, and hands. I get horrible night sweats, a tickle in the back of my throat, and my smile is crooked when I have my headaches. Does anyone else have this? My nuerosurgeon said he’s never had a patient with a crooked smile so I was just curious.
I know my first step is to get off of the topomax and find a new doctor. But I just am not sure which route to go…a pain specialist, acupuncturist, is this just something I have to learn to live with? If nothing else, thanks for listening to me vent. I appreciate having people out there who understand what I’m going through. I have a very supportive family but I’m sure they get tired of listening to me complain.
I hope you get a lot of input from members on specialists, berryboys. In the meantime, I quite like this symptoms alleviation list from the World Arnold Chiari Association: http://community.pressenter.net/~wacma/bhm-list.htm
And other meds to they put me on it doesn’t work I have chair malformation 1 and I was born with it and I suffer from depression and head aches and vision and my head aches get so bad I don’t eat I hate having this I wish there was a cure I see the doctor on the 10 I pray for everyone that have this problem
I have researched Topomax and I know it's not one I want to be on. I still have yet to see a neurologist. I'm scheduled for March 2nd. I would research some doctors and find a neurologist who knows about Chiari and not just one who treats headaches.
The most successful pain relief for us is a radio frequency rhyzotomy. A Frequency shock into the nerve at the back of the neck - the nerve that relays pain message to the brain. It is done under anaesthetic and takes only about 15 minutes. IT IS HIGHLY SUCCESSFUL. I have had it done twice. It lasted for 2 years the first time. The second one was done a year before the decompression. It caused me not to have the load of pain you have after the decompression operation. It lasted for more than a year after the decompression.
It does not take away the pressure or any other symptoms. You will know when to get checked out for pressure and all the other symptoms we battle with. BUT IT WILL BRING YOUR PAIN UNDER CONTROL.
I also use tablets containing MIRTAZAPINE which helps prevent depression, BUTwas prescribed to me by my Neueo to help PREVENT HEADACHES, and has helped tremendously.
I use LAMICTIN to help with my balance.
I have also been prescribed LYRICA to prevent the irritation and sensitivity caused by the effect of irritating sensitive nerve endings.
My pain is very well under control. I do have times when the low back of head is sensitive with a tired soreness, but is not extreme pain. I use OXY-NORTON or else OXY-CONTIN to bring it under control so I have energy to work and live.
My life is a happy one and I would encourage you all to try out some of the things above, especially the rhyzotomy as this gives you your life back.
pain mgt is your next step, as well as a different primary. accupuncture is also a good step in the right direction. as a 12 year (victim? survivor? whatever i am..") well the pain is now part of your routine, but DOES NOT define you. learn your triggers. ask questions. wave internet research at the so called "professionals! " mine hate it when i do it. but i'd rather be well informed than have more pills thrown at me. i hope this helps...
You have a right to complain all you want. We understand what you’re going through—or most of it.
I don’t have an acupuncturist in my town so I go to Pain Management. Please do not go to a chiropractor. A massage therapist helps as long as they don’t over massage. Have you tried Gabapentin? I still have muscle spasms & I use Tizanidine HCL tabs. My doctors & physical therapists suggested the following the vitamins: Calcium/magnesium, Vit B & D, and fish oil.
I believe in exercise. The physical therapists said to not do any exercises that I could feel in the back of my neck or spine. Also no sit ups because they put too much stress on your neck.
Most pillows are not good for people with Chiari. I read to sleep on 2 thin pillows: take 2 pillows & take part of the stuffing out of both until they fit your neck properly. This took me several nights to adjust it to support my neck properly. They sell a Chiari pillow but I’ve never bought one.
The NS told me to lie down for an entire hour after dinner. This does help because it relaxes your muscles which allows you to sleep better at night. Sometimes it hurts me to lie down so I’ll sit in a recliner or on the couch.
I keep a scarf around my neck when I’m outside & it’s cool. My neck muscles tighten up when I get cold. Tight muscles cause pain. I also know to not allow myself to tense up.
Find crafts you can do if interested. A nurse told me to take breaks often while doing crafts. I’ve read playing computer games helps, but don’t stay on the computer too long. Don’t allow it to stress your neck or shoulders too much.
Thank you all for the wonderful support and advice. I do notice that my neck muscles are incredibly tense and I have a great massage therapist that I need to visit more frequently. And I will try some of the other tips I saw on the list that dancermoms posted as well. Wishing you all good health in your futures as well.
Please see a pain specialist, if your insurance will allow. I am on my 2nd round of botox and have headaches far and few. Like maybe 4 since my 1st round of botox. There is light you just have find the right dr.
Hi. I have noticed improvement in my overall pain and daily headaches. I’m still getting too many migraines each week so I’m waiting for approval on Botox. I’ve been taking Elavil which helps me sleep better and seems to help with the pain. It’s an antidepressant often
Sorry …I didn’t finish my thought on last post…Elavil is an older antidepressant often prescribed for pain with less side effects than topamax. Topamax made me stupid. I try to exercise a few times a week to keep sane. Hope you find relief.
Hi, Could you please explain to me what the botox treatmrnt is about. How do they do this ? regards. flerrie
Gina Herndon said
Please see a pain specialist, if your insurance will allow. I am on my 2nd round of botox and have headaches far and few. Like maybe 4 since my 1st round of botox. There is light you just have find the right dr.
I may have missed something but have you gone back to the neurosurgeon to see why/if you still have a herniation after decompression surgery. I don’t understand why you are seeing a neurologist for migraines when he told you you still have a malformation and it looks like you didn’t have surgery. It sounds like that needs to be addressed before the pain issue can be resolved or addressed.
I have had two brain stem surgeries and ended up with pain at the base of my skull all of the time. I had ice packs there for years. I also used narcotics for years. It took me several years to have a Neurologist who specialized in headaches tell me I was experiencing intractable migraines and I didn't believe her. She started giving me Botox injections every quarter (and Topomax). At first they didn't work, but over time the Botox injections have been nothing short of a miracle for me. My Neurologist is now a close friend. She changed my life. (My MRI also still shows a herniation) So I would really encourage you to give it a try. You have nothing to lose. It truly changed my quality of life!
Thank you for your input hope4change. I just saw the doctor on Thursday and he put me on midrin for when I got the headaches. Of course, at 2:30 am this morning I woke up with one (I’m not sure why but middle of the night has always been when they occur). I have taken 2 doses of the medication but didn’t feel any difference at all. I know it will take time for my body to adapt to a new medication but the Percocet and a nap certainly took the edge off at least so I could get out of bed and get something done today. I see the surgeon next month and back to neurologist again in June so I will definitely discuss the Botox option with him then. I just need some relief.
Just some quick input. I agree with Jo above. If they state that the MRI still shows the same herniation as before the operations, than the operation clearly did not perform as it was supposed to
Out of personal experience, my symptoms came back after my first decompression due to scarring at the dura. That said my cerebllar tonsils were no longer herniated at that point in time. That's not to say that scarring in a different location could cause a re-herniation of the cerebllar tonsils as you describe.
I am curios to know two things. 1) Was a duraplasty performed during your operation. 2) did you have a post-op MRI within 6 months of your operation that showed a decompressed cerebellum
Nonetheless, I am glad to see that you finally have an appointment to meet with your neurosurgeon. Perhaps he can shed some light as to why your cerebellum has not decompressed.
I did not have the duraplasty…just had the c1, c2 and part of my skull removed plus a relaxation incision on the outside of the dura. I have had 2 post op MRIs and both still show a herniation but the tonsils do not have a peg like appearance and there is normal flow. My neurologist is sort of at a loss because all of his Chiari patients had the duraplasty and therefore no longer have the pain. If my neurosurgeon says the surgery was successful I may request a cine MRI just to confirm CSF flow. If nothing else just for my own piece of mind. Thanks for all of your input and support. It is truly invaluable to me on my continual journey.
I would suggest you keep track of time and your activity when these headaches are occuring. There very well may be a connection and there could be some things easily done that could make a difference. If they are consistently happening while sleeping for example, it could be because of posture and elevating your upper body may reduce the incidence by enhancing drainage of csf. Too soft of a pillow could be putting pressure in the area reducing flow. In any event, a good record of when where and some details can help sort it out.
berryboys said:
Thank you for your input hope4change. I just saw the doctor on Thursday and he put me on midrin for when I got the headaches. Of course, at 2:30 am this morning I woke up with one (I'm not sure why but middle of the night has always been when they occur). I have taken 2 doses of the medication but didn't feel any difference at all. I know it will take time for my body to adapt to a new medication but the Percocet and a nap certainly took the edge off at least so I could get out of bed and get something done today. I see the surgeon next month and back to neurologist again in June so I will definitely discuss the Botox option with him then. I just need some relief.
Hmm. That's very interesting, tough you have the right idea; I would request a cine MRI. It would be very valuable at this point. Even if there is still a herniation, it doesn't mean that there was not an increase in csf flow, rather, a decrease in blockage since before the operation. A flow study will definitely help to narrow down the underlying cause. And as TJ1 said above, keep track of all headaches and symptoms as there may always be a chance that at minimum, you may be able to reduce the severity or frequency in them by altering daily habits. Logging headaches and such is normally one of the first recommendations given by the neurologist.
Take care; keep is informed,
Anthony
berryboys said:
I did not have the duraplasty....just had the c1, c2 and part of my skull removed plus a relaxation incision on the outside of the dura. I have had 2 post op MRIs and both still show a herniation but the tonsils do not have a peg like appearance and there is normal flow. My neurologist is sort of at a loss because all of his Chiari patients had the duraplasty and therefore no longer have the pain. If my neurosurgeon says the surgery was successful I may request a cine MRI just to confirm CSF flow. If nothing else just for my own piece of mind. Thanks for all of your input and support. It is truly invaluable to me on my continual journey.