Hello all. Hope everyone is doing well. I am almost 23 weeks post op.Here lately Ive been having severe headaches that are so vicious that they cause me to be nauseated. The back of my head and neck r sore and I have a gushing sound in my ears and can hear what sounds like my heartbeat in my ears at times. My neurologist has given me tons of diff meds to try but none other than diamox, which my neurosurgeon for some reason doesn’t want me to take, is the only thing that works. I have an appt with him this wk but since the surgery he feels that I should be pretty much “cured”. I know it’s been almost six months but how long does recovery take? What r some questions or things that I should discuss with my NS to get my concerns across? Any help is greatly appreciated.
First of all, I am so sorry you have these awful symptoms. Can I ask if you've had a follow up MRI since the surgery? If not, you certainly should to assess what's going on. I would ask the NS why he doesn't want you to take the Diamox, my kid is on it and it made a world of difference with her headaches.
Best of luck!
Thanks Joalexa. I have had three mris since the surgery. One while still in the hospital in which I had a small pocket of fluid and two since then. The last two showing no leaks. Ive also had two lumbar pincture that surprisingly helped. But only for a short time.NS says he doesn’t want me on the diamox because your body eventually builds up a tolerance to it and its no longer effective. It works for me and I’ve been on it off and on since feb, mostly on. Even when I take it, it helps relieve the pain and most of the pressure but I can still feel a dull pressure in the back of my head. But I will take the dullness any day compared to the full blown HA. I also still take muscle relaxers because I still have tension in my neck. Both my NS and my neurologist both want to treat me with meds that r for migraines. They don’t work!!! They don’t seem to get that!
Wait, so the NS doesn't want you to take a medication that helps you now because it might not help you in the future? Wow, that makes no sense to me, but what do I know? LOL
Thanks Emmaline. Never heard of it but will google it now.
Lol. Joalexa. That’s how I feel. It’s clear as mud to me too. But that’s what he told me.
What is the Diamox dosage that helps you? Alexa was on 250 mg 3x/day and just weaned down to 2x/day. Did he put you on Topamax too as a migraine med? Just really curious at this point.
Joalexa, I take 250mg 2xday. Some days are better than others and I may be able to slide with one dosage if taken mid day, but those days r far and in between. I’ve some days had to squeeze in an extra dose, usually on days when I’ve missed a dose the day before. Tried topamax and it gave me a headache or never took the one I had away. I started with a 25mg dose twice a day and gradually increase to 100mg twice a day but my headaches were so bad that I would resort back to the diamox. I honestly think the topamax made my headaches worse. I’ve also tried other meds like neurotin, relpax, and an injection, I can’t remember the name. Nothing worked but the diamox. My opthomologist said I have optic tearing due to my pressure being so high. She said that diamox would probably be a better fit for me since it is made to help regulate pressure. My neurologist mentioned to me about having my NS discuss a shunt but he won’t even consider it because he doesn’t feel my pressure is high enough. My last LP my opening pressure was I think 22 or 23 and that’s while on diamox. Neurologist thinks or should be lower. Can’t remember what normal is but he said for my size it was high.
So if the NS is essentially doing nothing…no medication or surgical intervention…what is the solution. Definitely sounds like high pressure especially with the optic nerve…and diamox is the medical treatment for that. Maybe a second opinion at this point and keep taking what works until then? Good luck on Friday!
I dont know Joalexa. Im at my wits end. He is supposed to be one of the best in my area and comes highly recommended. He does seem to be knowledgeable about chiari, but I think he feels that he's done all that he can do for me. Its very frustrating! I havent seen him in about two months so we will see how this appt goes. I have a list of meds that Ive tried and symptoms that I am expericing.Hopefully we can come to some kind of treatment agreement. I go see him on Thursday. I will keep you posted. Thanks for your responses.
my NS said the same thing to me when my symptoms have only gotten worse. I actually started to see a Neurologist because it seemed like the NS couldnt do anything else for us. I would look into seeing doctors for the problems your having now, instead of continuing to see the same doctor who said your "cured"
Have you ever tried a natural diuretic that will work somewhat like diamox? I ask because dandelion root extract can work well to reduce excess spinal fluid. It comes in pill form and tea to brew. Just a thought and arnica gel, cream, and pills are a life saver for neck pain.
Hello, sorry to hear what you are going through, but I seem to be going through the same thing. I am 5 months post op now and I have terrible headaches, nausea and ear pain along with severe neck pain. The surgeon is saying the same thing that I should be healed and the headaches are coming from something else. They think I have trigeminal neuralgia causing my headaches. But I don't know what to think but I feel like I'm going to go crazy with all this pain. My question to you was do you do anything special when you sleep for your neck? I have tried all kinds of pillows and nothing helps, I wake up with such horrible neck pain. I usually use heat in the morning, but lately it seems like nothing helps.
Elsie Nash, I am also seeing a neurologist but he is useless. He just wants to keep prescribing me meds that dont help at all. And everytime I tell him that one med doesnt work, his response is "Well try this one." My PCP keeps telling me I need to go back to the NS and keep going back until I feel that he has completed my treatment. Im clueless as to what to do. Hopefully I will get some answers tomorrow at my appt.
Jarow, Ive never heard of dandlion root extract. Can I get it at a common pharmacy store or will I need to go to a specialty or whole foods store? Someone else also mentioned the Arnica gel so I will definitely look into that.
I will keep you guys posted as to what the NS says at my appt tomorrow.
I’m about 120-125 lbs and 5’5". Probably weigh less now since I’ve been back on the diamox. It makes me not want to eat. I was on it before surgery and lost about 11 pounds in 3 months. Since I’ve been back on it I can’t tell I’m losing weight again by how my clothes fit. I don’t want to lose it but its a side effect of the meds. So that’s prob why my NL thinks its a bit high. I’ll see what the NS has to say tomorrow.
Well, good day at the NS. He really listened to me and I feel he is trying to help me :). I have another LPscheduled:( for next week and another appt with my NS a couple of days afterwards. He did discuss with me the possiblity of having to install a shunt. Im not crazy about the idea at all, but I need some relief for these horrible headaches. I just have to make it a week and we will see what plan of action we have to take. Unfortunately, all plans of actions include another stay in the hospital. Not looking forward to that but am looking forward to moving towards less pain. I will keep you guys updated on what goes on. Thanks for being my sounding board!!
I am 9 weeks post Chiari decompression, and cervical fixation......I have had a headache since surgery, but it was doable, and responsive to Motrin and rest. But for 5 days now, I have had a screamer....and it is behind my eyes, and across my forehead and nose, just like the 10 month headache I had before surgery.
My doctor says it is too soon to panic, and that if I still have it in a week, we'll do an MRI.
It is very discouraging.
hilarymck, so sorry for your pain. I KNOW what you are going through. Keep calling him and updating him and even go to your PCP for help, I did. I can only hope we get some type of relief in the near future.