I’m scheduled for surgery on March 17th going for a 2nd opinion Monday. In so much pain. I wake up with a headache and I go to sleep with a worse headache. I guess I’m just looking for support from those that understand.
I have headaches most days. When I wake up with them they are the worst. I use fiorcet, imitrex, sudafed, and use a Migraine Ice gel strip on my forehead. Sometimes I use breathe right strips too. Still not willing to have surgery for it though.
I recently learned that chiari is most likely not the cause of my headaches. The first neurosurgeon I saw was ready to schedule surgery after seeing a 6mm protrustion of the cerebellar tonsils, but I then spoke with 1 neurologist who didn't think 6mm was significant, and a radioneurologist who also thought it was incidental. They both recommended an MRI flow study to see if spinal fluid was actually being inhibited. It turns out it wasn't, thus indicating surgery would not have benefited me. After notifying the neurosurgeon of the flow study results, he postponed surgery indefinitely.
Which made me wonder why he didn't prescribe a flow study in the first place!
I've since gotten a second opinion from a neurosurgeon who said he would not operate on a 6mm protrusion, but if I was adamant about surgery, I could get the flow study done. I then pointed him to my flow study previously performed, and he concluded that he would likely never recommend surgery for me.
Additionally, I saw another neurologist who agreed with everything, saying that my chiari malformation is probably not the cause of my headaches, and if it was, she would try to medicate before doing surgery. She mildly blamed my primary care doctor for ordering an MRI in the first place, which led me down the wrong path for 3 months.
Unfortunately, my symptoms haven't improved despite different medications and dietary changes, but I haven't given up hope. I'm seeing 2 new neurologists and an MD with some background in Eastern medicine this month.
I have had chiari headaches last for over a year. My doctor told me that surgery was not an option because it would need to be repeated every other year for the rest of my life. Through trial and error we found that amytriptoline taken on a daily basis at bedtime stops me from waking up with my headache. The headache always resurfaces around late afternoon early evening everyday, but I get daily relief now even if it's only 8 hours a day. I am extremely thankful.
I don’t keep a constant severe headache but the muscles in the back of my head never quit hurting. The muscle pain is not from tension either. I keep trying to find some stretches that will take the constant burning upper spine / shoulder (thankfully not shoulders) pain away, but I’ve not found it yet. A nurse said no person could have constant pain that never went away. My treating NS told her that with Chiari you can have constant pain. He explained to her that the pain can worsen but never go totally away. I used to use ice packs, but I now wear out a lot of heating pads.
Even though Chiari has been around for years, most doctors & nurses know nothing, or very little about Chiari. I’ve been told to not go to a neurologist. If you have a knowledgeable one, you are lucky.
The NS said I need surgery but since I’ve had it so long the HAs & other symptoms would never totally go away. He pointed out that I would have to have the surgery every few years since I get a lot of scar tissue. The NS said he could schedule my surgery quickly if I started to worsen quickly. He left the surgery up to me, and I’ve opted to wait.
Wow all of that is even more confusing. I have never heard any of that. Guess I will see what they say on Monday. Gotta be some relief somehow.
I forgot to say that Neurontin/Gabapentin (sp?) helps some with my burning pain. Different doctors & physical therapists have suggested different vitamins for me: B, D, calcium/magnesium, and fish oil.
I had both the classic Chiari headaches and other headaches that seemed almost like sinus headaches. Surgery helped both types for me! I’m almost three years post op and have no regrets. I’ve had no issue with scar tissue on my follow up mris thankfully!
That’s good to know! Thanks for sharing the positive side of surgery!
Anglyn, how are any other symptoms? Deciding on whether to do decompression is the hardest decision I have ever had to make.
I was also having dizziness, fatigue, numbness and tingling in my hands and feet, and neck pain. All have improved for me. In fact I just got in from shoveling snow. I could never have managed that prior to surgery!
My NS had operated on me before my Chiari was discovered. That’s how he knew I develop scar tissue quickly. I inherit this from my mom.
i have had good results with accupuncture... but getting the insurance to cover of it is not easy. involves getting a doctors letter and approval. a nuisance, but well worth it.
After surgery and the initial pain of recovery I was mainly headache free for over a year. But ever so slowly the headaches have come back full force. This month made 3 years since my surgery and I am now almost back to where I started. All my test results were food all but my nerve conduction study. And my MDI showed I had several diaca from my surgery site down to my shoulders pressing into my spine. Both my neurologist and spine surgeon said they were gonna hold off on surgery. Me neuro sent me to him because she wasnt wanting to up my meds (been on the same does for 6 years not very effective anymore), so she was gonna let him so it. Well he agreed with all the test results and said all they could do was make mW more comfortable with stronger pain meds n a different muscle relaxer. I’m like OK now which ones? He left the room so in could go check out. I had no scripts at checkout so now I am guessing I have to go back to my neuro for them!! I’m a bit ticked because they are playing bounch the ball with me! If they had to live with the pain that we suffer with I am SURE they would understand! So I guess this week I’m gonna try to get my neuro again, was closed all last week due to the weather!
Getting pain meds has become a huge problem now. The war on drugs has been now been directed to chronic pain patients.
under the new rules your NS or neuro has to send you to a pain mgt team. THEY decide what you can have and monitor you with pee tests besides. screw that. ive had moderate success with meditation and accupuncture, and limit my caffeine intake(trigger). lately however, there are all sorts of tests because there is no relief. NS and i are aiming to avoid surgery and possibly flush the shunt(protein blockage) and ive got permission to go back to the gym, (use common sense and moderation, he said LOL) add to this a 2 part sleep lab, where they "discovered" my pain levels affect my sleep. brainiacs...
oh, and i need to lose weight... my daily symptoms mimic heart issues( im fine, really) and i ve been labelled a "morbidly obese hypochondriac"... being a human guinea pig is no fun at all.
Amanda,
I am wishing you good luck and will pray that surgery goes well and relieves all of your symptoms. It is funny how Chiari effects people in different ways. I have slight headaches and take asprin or tylenol every other day. I have a 2.2 cm herniation. I have muscle twitches, neck pain, back pain, but try not to let it bother me. I have a great neurosurgeon and neurologist who I consult with every 6 months. Hopefully you have the same. Also my neurosurgeon mentioned that most of his patients have had only one surgery. About 10 percent had more than 1 but not every other year.
same here I have chiari malformation 1 and I have bad headaches every time I do any thing cough sneeze stretch yawn dance bend yell and laugh and when im playing with my children and when I take my med I still have a headaches I don't know what to take anymore its to depressing to me and my blood pressure is good my hole head hurts back front sides I hope your surgery goes great ok wish you a lot of luck and I see the doctor on the 10th to see if I need surgery or not and do you know how long is the surgery
I'm sorry about your headaches....I had the Chiari surgery 4 years ago and nothing has
gotten better...i'm sorry to tell you this but we are not all alike...my headaches were so intense
that they were causing mild memory loss...i could not remember where I was, what my next
step at work was..lost for words etc...I am now under the care of a doctor at a pain management
clinic...for about 4 months i have been on Neurontin again and morphine patch....this has not been a
pleasant experience since the surgery..slowly these symptoms started coming on...same as before
the surgery....i don't want to scare you because as i said we are not all alike but i hope for you that
the surgery will be a success and you will have the best results for years to come...
I am sorry about your constant headaches. I am wondering if you have ever explored mindfulness or relaxation techniques? We have a new mindfulness group on here (under groups tab) that might be beneficial. I personally use these techniques (for Fibro) and while it took a lot of practice initially, I have seen lots of benefits for my health. Here are a couple samples of articles / exercises that are in the group. http://www.chiarisupport.org/group/mindfulness-and-relaxation/forum/topics/meditation-exercise
http://www.chiarisupport.org/group/mindfulness-and-relaxation/forum/topics/deep-breathing-exercise
I am sending gentle hugs your way.