Headaches

[steph]

hi amn70, my situation is very similar I am 32, a runner (used to be) and also had the sub approach 12 months ago. I was also in the emergency room 2 months ago with similar simptoms and they thought it could be an aneurism. but then they said it must be migraines. I have started acupuncture and it has helped a little. I am seeing my surgeon in two weeks and will let you know what he says maybe it can help us both. I read in another entry that people have had some success with flexoral, have you tried that?

[sarahmonagle]

I had a suboccipital craniectomy six weeks ago for a meningioma next to the brain stem.  Since then, I have had horrible headaches every day.  I am so afraid that I will be sentenced to living the rest of my life with these terrible headaches, due to the approach of the surgery.  What I'm wondering is if I should be pursuing treatment with the neurosurgeon who did my meningioma surgery (who lives five hours from me) or if I need to find a local neurologist to work with on managing this.  Does anyone have any suggestions for me?
Thank you.

[beaumec]

I think the reason is that if you don't reconstruct the area by putting the bone flap back and putting some plastic over the hole, then the dura, the lining of the brain, is in immediate contact not with the skull but overlying muscle.  As that scars down, whenever those muscles contract, like whenever you move your head or neck, and the muscle contracts, it pulls on the dura, a pain sensitive structure and that can cause a severe headache.  When we do have medically intractable headaches after a retrosigmoid, I encourage patients to think about having a very minor procedure.  We open that wound, remove the scar tissue and put a small plastic plate in the bony defect, so that the dura is no longer in contact with the muscle."

I had my AN removed at the London Clinic in 2003 by Gerald Brookes by retrosigmoid. They did not put any plate over the hole in the skull. I have severe problems if I do physical work e.g. in the garden, using e.g. a heavy hedge cutter held up to head height. I get severe headaches, and pains in my neck and shoulder. This post is very helpful and makes me think it may help to have this plate inserted, in case this is exacerbating my headaches.

I had an AN of less than 1cm but I suffered total hearing loss, which it would seem was unlucky, and like many others continue years after to suffer very bad tinnitus. Like other members, this is always worse in noisy environments such as supermarkets (with the freezers and air con fans) and restaurants, and in a noisier car. What is worse, is that although I have good hearing in my left ear, if I listen to music on e.g. an MP3 player, it causes a terrible aftermath of tinnitus in my deaf ear - so bad that I have more or less resigned myself to not listening to music except quietly in the background. For a musician that it pretty tiresome and depressing.

Also I have found that certain foods seem to also cause me major problems with dizziness and headaches - cheese, and spinach (the iron??), and any salty foods. I am finding I have to control what I eat far more than I expected, and it does seem salty foods are bad news for me.

[Larry]

Interesting quote from a surgeon? can you please advise who provided the advice and where they work because I would like to pursue this course of action.

cheers



Larry

[dgrummer]

I had read this too in an article quoting Dr. Friedman from Florida - I believe.  I’m trying to find out where I read it – it may have been some literature I got from ANA.  When I do I'll post the link.

I did ask our neurosurgeon about it and his answer was that in the past they had left the area exposed – which caused a soft spot or dent behind the ear.  When folks started asking to have that dent corrected with plastic surgery for cosmetic reasons – they realized that the headaches went away too.  It was his practice to always reconstruct that area when doing the RS approach.

[dgrummer]

well - i didn't find a link - but I did find the hard copy of the Sept 2005 ANA newletter where Dr. Friedman was quoated just as above - it's on page 6 of the newsletter.  There was a question asked specifically about headaches and Dr Lewis and Friedman gave responses.  Dr. Lewis suggested some headaches could be attributed to how posterior the incision was made and if the great occipital nerve was involved. 

I don't want to sound like I have a clue what I'm talking about - I'm just typing what is in the article.   

[Peanut]

I also posted a quotation from the ANA Notes of September 2005 on headaches in another headache thread on this forum.  I took the statements by Friedman to a doctor I am seeing in an effort to manage and send away these debilitating headaches. He emailed Friedman several weeks ago but has still had no reply.  Does anyone know his address or a way to reach him?  I am currently trying a different type of acupuncture weekly(I tried another type for about a year) and 150 mg of tramadol (Ultram-two doses of 50mg, two of 25mg) daily.  I've had three sessions and so far have, alas, not noted improvement.  Neurontin and Amitryptiline are definitely not for me.  Have not tried Flexeril. Beyond Feverfew and acetaminophen(Tylenol), I resort to Hydrocodone, but I so wish to get at the cause.  The headaches make it nearly impossible to eat, and when bad, often put me to bed.  I do often use a hot pack on my neck.
Does anyone know of a person who has had the procedure described by Dr. William Friedman in Florida?
Peanut

[Peanut]

It is in the thread started by janpentecost and my post is dated september 27.
Peanut

[lifeisgood]

I strongly recommend weekly massage to alleviate headaches.
I am a massage therapist and did not receive regular massage (go figure ) until I started getting headaches every 7-9 days like clockwork.  I started getting massage weekly and since Sept 8th, have been headache free.  I recommend you find someone who will work Traps/Scalenes, Sternocleidomastoid, levator and also does facial massage.
I had headaches before my surgery and am still recovering from facial paralysis which is another subject but the massage is helping my face become symmetrical and more balanced again.  I also received wonderful facial/neck stretches from a facial retrainer to help in this area.
Best of luck to you.  Try this and let me know if it works. You may also find a therapist who will give you a discount for buying weekly massages.
Take care,
Mary

[bjordanr]

I believe the address you are looking for is:
Dr. William Allan Friedman
Department of Neurosurgery
University of Florida
Box 100265
Gainesville, Florida 32610-0265

Phone # (352) 392-4331,
(800) 633-2122, ext 24331
Fax # (352) 392- 8413

Please post if anyone is able to get more info on this subject.

[Larry]

All,

I'd like to re-raise this thread and see if anyone has taken pot to alleviate the headaches. I live in Sydney Australia (down under and a bit north of the Antarctic for most of you) and there has been talk of a trial to legalise pot for medicinal purposes - mainly for HIV, Cancer sufferers as there has been some claims that it does help. I've never touched the stuff so i wouldn't know. is it legal anywhere for medicinal purposes and would anyone know whether it would help headaches following an surgery?


Larry

[barbjo]

Hi all!!  I am hoping someone has similar problems.  I feel real alone with this, the doctors have let me down repeatly.  I had my acoustic neuroma removed 2 year this March and the headaches and throbbing and pounding around the right ear (thats my side of the neuroma) some days are unbearable.  I have talked with my neurosurgeon, neuologist and general practice and no one can help. The neurosurgeon makes me feel as if I am dreaming these symptoms.  I have been put on drugs for migraines..no help.  The only relief I have gotten over the past 2 years is when the neurologist ordered a lumbar puncture to check the fluid, after the test they gave me Tylox and Darvocet for the pain.  I was so out of it I didn't know I even had a head!!!!  I am not sleeping at night, or when I do sleep it isn't a sound sleep as the pain will make me shift several times throughout the night.  I just don't know what to do for everyday relief.  Any thoughts?!!! 
Thanks all!!!  Barbara

[Larry]

Barbara,

You are not alone. There are many people suffering your symptoms. I do take neurontin which helps a bit and will take stilnox to help me sleep at nights - on an irregular basis. I'm not a fan of sleeping pills but these are supposedly non addictive.

I wish I had a solution for you coz I would use it as well. On another post, Janet has described a condition as hemicrania continua. It's more a description of something that the doctors can't diagnose I think but you could look this up under google.


Larry

[DeniseSmith]

I am almost 9 months post-op 5/05.  I get headaches sometimes.   I find I get headaches, when I sleep flat, with only one pillow.  When I don't drink enough water, and when I am stressed at work.  Usually extra strength tylenol helps.  I am sorry others suffer from horrible headaches and tinnitus. Luckily, I don't have those.  Just all the other crap! 

To answer the guy about the pot, don't know if it helps, but I am sure after you smoke, you don't even care if you have a headache. 


Denise

[wind6]

I am still on 10mg Flexeril at bedtime and have not had a single headache since. I am so grateful it has worked for me. My docs want me to stay on it for a couple more months and hopefully the headaches wont come back.