ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: danijake on April 19, 2008, 07:25:26 am
-
I'm getting very discouraged by the length of time these headaches hang around. 5 years ????!!! I don't think I can handle that. I did find out it's my occipital nerve and the way the surgeons twisted my head for 7 1/2 hours! That's what my chiropractor said, anyway.
I just don't think I can handle this long term. I've tried heat and it makes it worse, so I went to ice. It helps, but not for long. I do find golf balls to be effective. Tennis balls just aren't hard enough!
I do know my headaches are cervicogenic cuz I saw the x-rays. Not a pretty thing.
Actually I think--well, I lost it. Those darn "brain cramps"!!!
I don't know what to do. The ENT stands by the "not supposed to have headaches" thing.
Hope all goes well with everyone, including me!!!
-
Danijake,
Are you sure they can tell where the orgin of the pain is from an X-ray? A fluroscopy guided nerve block could isolate the source of pain if it is done right. It may be coming from the facet joint or higher up on the occiptal nerve. This wouldn't show up in an X-ray. An Xray could suggest it was cerviogenic but if the treatment doesn't work, then you might try to locate the exact source of nerve irritation with a nerve block. In my case, it was higher up where a blood vessel was piercing through the occipital nerve. Probably from the head frame in surgery rather than the position is my guess. Medication or manipulation would never have cured it. Surgery fixed it.
My experience is that the doctors can only offer you what is within the scope of their expertise and within the limits of their specialty. Trial and error can be challenging on many levels including financial, but don't give up. Somewhere, someone can help you.
Sincere best wishes,
Janet
-
Dani -
have you seen anyone other than your ENT and your chiropractor about your headaches?
I realize that everyone is different, but my head was also twisted during 7 1/2 hours of surgery and I have never experienced any headaches. I'm not a doctor, but this just doesn't seem like a logical explanation to me.
I don't see any reason why you should have to be dealing with this much pain; someone should be able to do something for you. IMO you should continue to look for an answer to what is causing your headaches and hopefully that will bring with it some solutions.
Hope things get better soon,
Jan
-
Dani~
I was in surgery 14 hours and never have headaches!
K
-
I made an appt. w/ my PCP to get a referral to a neurologist. I have HMO medicaid now. All of the chiropractors I've seen said it was from ears of abusing my spine (jumping over fences, falling off bikes etc.) They said the surgery triggered all of it and it will take a year or two to correct it. (years) I don't know if I believe that at this point.
And not to sound like a dummy or anything, but what does IMO stand for? :P
-
And not to sound like a dummy or anything, but what does IMO stand for? :P
"IMO" stands for In My Opinion
Phyl
-
Dani -
glad to hear you've made an appointment. Hope this is the start of some relief for you.
Hang in there,
Jan
-
My ENT and Neurologist have told me that my headaches have nothing to do with my AN. I have headaches DAILY, some are really bad others not so much. My neurologist has just started giving me occipital nerve blocks to help.....I got my first round in February.....I go again in August AFTER my translab to remove the AN. SO far they have helped my daily headaches....I dont' get them as frequently and the severeity has lessened. I still get a doozie every now and again. But overall it has helped. The thought of thsoe needles in my head was a little disturbing.....but surprisingly it was fairly painless and has worked well for me.
Best of luck, hope you're feeling better :)
Melissa
-
Melissa.
I think your doctors are on the right tract. Maybe your occipital nerve and a blood vessel are close together like mine were. You might want to discuss placement of the headframe during your up coming surgery to aviod pressure on the nerve. I think this is what caused my headache problem, since my headaches became severe after surgery. A blood vessel was found to be piercing through the nerve in a recent occipital nerver release surgery. I know they try to be careful with this, but some people's nerve ananomy is different. I don't want to sound like I am blaming anyone. I just want to make people aware of the possibility.
Janet
-
My PCP said okay, he'll refer me to a neurologist who takes this ins. It stinks.(the ins.) So did the Dr office!!! Anyway, He said he's heard of bone dust causing headaches. The surgeons try to get it all out, but they sometimes miss some. It can cause problems for a very long time. He said to ask the neurologist when I go. I just want some answers!!!!! :)
-
You might want to be referred to a pain clinic. Remember, a neurologist can only do what is within the scope of their practice. A neurologist can only prescribe medication or refer you to someone else. In general, they don't carry the type of malpractice insurance to do nerve blocks like the doctors at a pain clinic. IMO, you need a nerve block to determine where the pain is coming from.
My surgeon accounted for all the bone dust as stated in his operating room report. IMO, my headaches were from pressure put on occipital nerve during surgery.
Janet
-
Dani--what meds are you on for chronic pain right now?
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
-
I'm on Neurontin 300mg twice a day and then 600mg at night.(If I take 600 during the day, it makes me loopy) Then, ibuprofen 800mg every 4-6 hours and tylenol rapid release 1300mg 4-6 times a day-alternating. THEN, klonopin 1mg 3 times a day for the occipital nerve pain and soma 350 in the AM and at night before I go to bed for the tightness in my neck and muscle spasms caused by the occipital nerve and the messed up bones. :P That's it and it seems to be working okay. I also see a very caring chiropractor who doesn't take my medicaid, but will work with me on the money thing. I owe him $750 right now. He just wants me to feel better. He knows he'll get paid. I've been giving him whatever I can afford every week.
-
You should ask your PCP about giving you something to protect your tummy from the ibuprophen or at least take it with OTC Prilosec and definitely with food. I really ruined mine the first year out by taking too much ibu and now I have a permanent case of acid reflux disease, so watch it carefully.
Hugs,
Capt Deb 8)
-
Thank you Deb. I will watch it. I started getting a burning sensation with upset stomach last week, so I laid off the ibuprofen and went to tylenol. I tried not to take anything, but the headache just won't stop pounding if I don't take something. Tylenol doesn't work as well, though. Thanks for your concern :)
hugs back at ya!
Dani
-
Dani I just wanted to let you know I am thinking of you and wish you well. I hope you headaches do get better and soon. I to ruined my stomach with all the advil I took for the facial infection and can only take a little bit like one pill a week without having problems. So I have to agree with Capt Deb on this one and do get something for your stomach and be very very careful. Have you found anything that works to take care of your headaches at all? I feel very badly for you. Kisses to your forehead. :-* 16
-
Wow, I totally flaked out for a few days and forgot about this thread. Thank you 16. And everyone else for the suggestions. I did go see my Dr and he is going to find a pain clinic that takes my ins.---Hopefully it will cover this.
I'm having some issues with the tinnitus the last two days. It's very loud and making my head hurt worse. The neurologist said it's probably my nerves regenerating from the surgeries ???
My scar goes all the way to my jawbone. I think my "chunk" was way in there! They had to cut muscle in my neck to get to it. OOOOWWWW.
I guess I'll try to sleep now. Have a big day ahead of me---as always.
Dani
-
Hi danijake: I don't sign in here often, but thought to check. Noticed your post about terrible headaches. I've had such horrible headaches as well after my suboccipital procedure to remove the AN...prior to that I didn't really know what a headache was. My surgery was Nov. 2001 and it took about three years before I noticed substantial improvement. I'm 6+ years post op now and truly can say that I feel so much better.... I tried the chiro route and think that this may have helped, but I stopped this now. I also went to a physiotherapist who specialized in headaches and she did wonders for me as well. I also tried acupuncture but this didn't help me - you could give that a try. I had also been at the point of getting a referral to a pain clinic.
I remember being in the midst of those horrible headaches wondering if and when it would ever end - people in general just didn't understand but I had a very supportive hubby and extended family that helped me through this time. My boys (I have five - then ages 4 - 14) didn't really understand my headache situation and kept on with their life and making noise! That is one thing that I found the most frustrating, actually. I truly hope that you have good support because you need it! With time, hopefully things will also improve for you. One thing that I do find helps me now is to get outside and go for a good walk - actually some headaches have disappeared when I walked.
Hang in there and hugs!
-
Thank you Cecile.
I was hoping the headaches were starting to go away. Since I've been going to the chiro they've been fewer and actually a few days I didn't have one for a while. Then the Tinnitus started getting louder and my headaches returned without mercy. I'm still seeing the chiro for my neck and back, but the tinnitus is getting in the way. He even suggested accupuncture. I don't have any money and i don't think Medicaid will pay for it.
Wow, you had 5 boys?! :o I had one(9 yrs) and it's like he turned into ten boys in the last year. He's been through a lot. I'm his life's blood. He'd be lost without me.
I will try the walking thing. But, I can't when it's bad. Every step feels like my head is gonna fall off.
Thanks for the post.
Dani
-
Hi Dani:
I also deal with tinnitus....drove me absolutely crazy the first couple of years after surgery. Crowds and music (bands) are something I try stay away from even now. Now my tinnitus is just as it was after surgery but somehow I have been able to tune it out most times. Having to deal with those nasty headaches just makes everything else seem horrible too.
Just curious - when did your headaches start? I had absolutely NO headaches until three weeks after surgery - so strange!
As for my five boys - I did stay with my parents for about six weeks after coming from hospital. So I was away from home for two months. There is NO way I would have been able to handle the noise. I had enough trouble relearning to walk (balance). It was only when I could do stairs half decently that I came home. And even then, a good friend of ours took a couple of boys for two months during the times my hubby was working.
I only tell you this to encourage you - it WILL get better with time.
Cecile
-
Cecile,
We have something in common: my headaches started three weeks after surgery, too. And my mom kept my son for 4 months.
I had a "live in caretaker" for two weeks and after that person left, I started falling a lot. I fell once and cut my head opened, bled all over the place and don't remember it. I woke up in my bed with a sore spot on my head, blood on my pillow and by the front door. So, I had to stay with another friend for a couple of months until I could get my balance back to half-normal!
The tinnitus is very loud tonight. I can't sleep. I have a sound machine that may just come in handy. I'll go try it when I go to bed.
I believe it'll get better, but I am a big "weenie" when it comes to pain! :'( ::) :P
-
I just found that so odd - headaches starting three weeks after surgery! How is your balance now? I just feel so much for you....hang in there! It's so easy to become discouraged - don't be afraid to ask your family/friends for help if you need it. I found that many people just don't understand - they seem to think one should just get over it and on with life... It would help to print off some responses from this site and hand it to family and friends. Hugs.
-
My balance is okay until dusk. Then I look like a drunk.
My family doesn't understand, and I can see why...they haven't experienced this. And my printer is messed up!! Go figure ::)
My sister thought I was on something the other day. That upset me like you wouldn't believe. I keep trying to explain it to her, but I guess she's so dingy that she forgets!!
Dani
-
My balance is okay until dusk. Then I look like a drunk.
Dani -
maybe I'm stating the obvious here, but it sounds like your balance issues are related to fatigue. I haven't had balance issues on a regular basis since a few weeks post op, but I find that when I'm tired I have them big time.
Jan