Sorry to be posting so much today, but you all seem to have so much wisdom about CM. I was diagnosed with CM this time last year. When I seen the NS last year he said he would not reccomend surgery until it was a life or death situation because of the risks and complications. I can handle the bouts of numbness and the slight loss of balance, but my headaches are getting so bad… I use to be able to control them with painkillers, but the headache I currently have I have had for few days and nothing is making it better. Is their anything that can help? Such as diet, positions, pillows… Anything at all?
First of all…You can post as often as you want…There is no limit…I promise;) In regards to headaches, the only thing that really helps me is ice packs. I usually have one on the back of my head/neck and another one across the top of my head. I also take Fioricet for my really bad headaches. I only use it when absolutely necessary, because taking it too often can actually cause rebound headaches. I try to limit taking it to once or twice a week. I hope you feel better soon!
Good luck I’m having the same battle, literally. It’s been non stop since Monday. Gets to be off the charts with pain when it peaks and then valley’s at miserable. Good luck again.
Kathleen.
I just had a regular MRI and they said I had mild/moderate CM, but no one told me all the things to avoid such as rollercoasters, Chiropractors… So my bet is it has gotten worse. I have my 12 month follow-up MRI soon, so I guess we will see. There are not many if any Dr. in AZ that I found that specialize in CM. Depending on my pain and the results of my MRI, I may looking to traveling to a Chiari Clinic. I am just not sure my ins would cover it…
Beeba said:
I can only give an opinion here because I went for surgery. I think if your ns felt you would be worse with surgery than without find a ns chiari specialist. I just don’t think someone who really knows what they are doing would give this opinion. Possibly I misunderstood. Even having a bad surgery first relieved a great deal of symptoms and now that I have had the second one(which I think and hope and feel was successful) my symptoms have been helped greatly. I am just two weeks post op so time will tell. But any relief of that pressure definitely helped hugely. Good luck. What does your cine mri say?
I take Fiorcett. It is the only things that helps, but I am post op. It didn't offer much relief for the headaches before surgery. Be careful because they may be pressure headaches due to fluid build up. You might want to at least call the NS and let them know that the headaches have gotten worse. Good Luck!!!
Thank you! I am lucky that my headaches come and go. I only get one BAD (the kind that makes you feel like you are being hit in the back of the lower head by a baseball bat and your head is gonna explode) about every 2 to 3 months, but they sometimes last for days…
Crystal said:
First of all…You can post as often as you want…There is no limit…I promise;) In regards to headaches, the only thing that really helps me is ice packs. I usually have one on the back of my head/neck and another one across the top of my head. I also take Fioricet for my really bad headaches. I only use it when absolutely necessary, because taking it too often can actually cause rebound headaches. I try to limit taking it to once or twice a week. I hope you feel better soon!
Good luck Kathleen, I pray you find relief!
katcap said:
Good luck I’m having the same battle, literally. It’s been non stop since Monday. Gets to be off the charts with pain when it peaks and then valley’s at miserable. Good luck again. Kathleen.
Thanks Nicolee! I am due to follow-up within the next few months. I will call and schedule my follow up
nicolee said:
I take Fiorcett. It is the only things that helps, but I am post op. It didn’t offer much relief for the headaches before surgery. Be careful because they may be pressure headaches due to fluid build up. You might want to at least call the NS and let them know that the headaches have gotten worse. Good Luck!!!
The only thing that works for me is Fioricet & Amitriptyline. I hope you start feeling better.Caffeine will also help. You can also get your two Major Occipital Nerves injected to block them. They run from the lower Occipital region over the top of your head. This helped me a lot.
I did have the block in August or September and it did help. Did not get them as often. When I called the neuro’s office they said he could see me in August… I just can’t wait that long! On the bright side, that caused me to start to research my condition which brought me to this wonderful site!
TracyZ said:
The only thing that works for me is Fioricet & Amitriptyline. I hope you start feeling better.Caffeine will also help. You can also get your two Major Occipital Nerves injected to block them. They run from the lower Occipital region over the top of your head. This helped me a lot.
TracyZ or Stacy - does the nerve block procedure you two are referring two have a specific name? Just curious. I am scheduled to get a facet injection next week but have a feeling that's not the same thing. I know very little about either type of injection or procedure, I am just learning. Thank you for any info!
It does, but I don’t remember. It is a nerve block in the back of my neck/head. There are 2 shots, one on each side.
Sparkyschick said:
TracyZ or Stacy - does the nerve block procedure you two are referring two have a specific name? Just curious. I am scheduled to get a facet injection next week but have a feeling that’s not the same thing. I know very little about either type of injection or procedure, I am just learning. Thank you for any info!
I'm glad to know that I'm not the only one who gets those headaches. That's exactly how I've been saying my headaches have felt lately. I had one for 2 nights that hurt so badly that I slept sitting up in a chair!
Stacy said:
Thank you! I am lucky that my headaches come and go. I only get one BAD (the kind that makes you feel like you are being hit in the back of the lower head by a baseball bat and your head is gonna explode) about every 2 to 3 months, but they sometimes last for days...
Crystal said:First of all...You can post as often as you want...There is no limit...I promise;) In regards to headaches, the only thing that really helps me is ice packs. I usually have one on the back of my head/neck and another one across the top of my head. I also take Fioricet for my really bad headaches. I only use it when absolutely necessary, because taking it too often can actually cause rebound headaches. I try to limit taking it to once or twice a week. I hope you feel better soon!
You need both Major Occipitial Nerves blocked. They inject them in the hollow area in the back of your head. The nerves run from the back bottom of your head over the top to the front. It helps immensly. It also helped me not feel like my skull was a broken egg sensation. It's called Major Occipitial Nerve Blocks. It will make you feel drunk for a few hours, so please take someone with you, but I highly recommend it.
Sparkyschick said:
TracyZ or Stacy - does the nerve block procedure you two are referring two have a specific name? Just curious. I am scheduled to get a facet injection next week but have a feeling that's not the same thing. I know very little about either type of injection or procedure, I am just learning. Thank you for any info!
I’ve been fighting this since last Monday. Off and on, never knowing when its coming or going bc when I think its home, _BAM!!! It hits again. Sometimes it peaks and valleys other times it peaks and only lightly let’s up. I can’t position my head w/o pain right now. I’m contemplating going back to the ER to just take the edge off the pain. Bc at this point all the major meds have NOT helped, only touched it. I quit taking the percocet bc I think they were adding to the pain with a diff kind of headache. I don’t see my neuro til may 2nd. I’ve had head/neck MRI and shows 9mm herniation. No CINE MRI or mid/low back MRI yet, but I believe they do have that ordered for the visit around the 2nd. My back has been sore off and on and in btwn is when I get the “attacks”/peaks of pain, wonder if that could be connected? Also, the pain is going down my left neck/ear worse than usual…??? I’m just at a loss and this has had me on Short term dis since last Tuesday. Om so worried and in so much pain.
It’s also hard to just go to an ER when by the time I get there, sometimes it’s hours btwn attacks and they won’t admit w/o immediate danger either. I’m stck btwn rock & hard place right now.
Stacy,
You need to see a neurosurgeon that does the decompression surgery and ask for a Cine MRI to measure CSF. It shouldn't get to a "life or death situation" The surgery is very serious and should not be taken lightly but it really is the treatment for Chiari symptoms, not a cure. I use Zomig for my headaches and it works really great for me. Heat helps me so I use microwave flax seed hot packs for my neck face and base of skull. Others swear by ice but ice makes me worse. I am sorry your going through so much pain. We all know how it feels and it's not fun. Sometimes I wonder how I got through some of the headaches I had before I had my surgery. I still get them but they aren't nearly as bad and I have medicine. Good Luck and we are here for you.
Wendy