Post-op Headaches

[simonsch]

Is any one out there experiencing headaches from their surgery?

[marjoryb]

I have headaches all the time (surgery in July '06 ).   I am taking tons of Advil .    The most wicked ones occur at night time .  I don't know if I'm getting more tolerant of the pain or whether the pain is diminishing in intensity, but I'm still getting them.   When I saw the doctor in November he said that headaches are common but in many people they go away - I hope I'm one of the ones who loses 'em.

Marjoryb    

[Captain Deb]

I had excrutiating headaches post-op for about 2 years. I tried about 4 or 5 different meds as preventatives, but nothing worked. I, too took tons of advil and ended up with an ulcer in the tummy which added to the pain, so be careful.  At about 2 1/2 years they started to diminish a bit and now I'm by no means headache-free, but I'm better and have learned to give myself Imitrex shots for the really bad ones and my doc has me on 2700 mg of Neurontin.
I've stopped taking vicodin, which I took almost daily for a year.  Still have a lot of head "pressure" which is more uncomfortabble than painful.

I suggest to anyone who is still experiencing headaches at a year post-op to see a headache specialist at a pain or headache clinic. I waited for three yerars to do this. I was working with a neurologist, but he sort of gave up on me and referred me to the specialist.

There is alot of experience with headaches on this site--just use the search bar.

Capt Deb

[nancyann]

Hi Simon:

The first 2 weeks or so post op the headaches were round the clock, I took Tylenol Extra Strength every 6 hours.   Then, little by little, they went away.
Now I get little ones once in awhile, take Advil for it.   Thank God they're nothing like immediately post op.

I was never one to get headaches pre op.- if I got a headache twice a year it would be alot.
   Now, the most annoying thing is the constant 'stuffed head' feeling, but it's doable.

Best wishes, Nancy

[palms0@hotmail.com]

my husband had a 9mm tumor removed retrosigmoid on 7-20-06 by dr willcox and dr evans at jefferson hospital in phila
they told us not to worry about facial palsy but he had a 4-5 palsy right after surg now thay call it a 2-3. he wears an external weight on his eyelid to help his eye close and his face still does not work correctly.
his incision still is pushing sutures out??? and gets red crusties on it. he did not have headaches right away but for the past 2 mos they have been getting worse sometimes they are around the incision and are very painful then others are around the whole head around the eye everywhere. he has them 24 hours a day 7 days a week they just vary in intensity from a 4 to a 10.
this is a guy who ran 5 miles a day prior to surgery and had no symptoms other than tinnititus preop
we wonder why did we ever do this, it has ruined his life.
anyone with similar problems out there who is getting better??? almost 5 mos post op and it seems it will never end!!!!!

[nancyann]

Hi Palms,

Sorry to hear your husband is still having a bad time;   it does get better.  I'm glad to hear his palsy is down from 4-5 to 2-3, I'm still at a 6 on the paralysis scale,( i forgot the name of it, anyway) no movement at all.  what I wouldn't give to be at a 4 !!!!

Don't know why he's still getting crusty things at the site almost 5 months out - I'd check with the docs, also re: the headaches.  Many people on this site are still dealing with headaches, & are alot farther along post op time than your husband ( & me).
I know what you mean re: 'why did we do this',  I felt that way at first, but it had to be dealt with, & if we went the radiation route, you don't know what could have happened there.   No sense in second geussing;  you never know what shape the facial nerve is in till they get in there, my facial nerve was shot;  at least his paralysis IS getting better, it's what I'm praying for.

Best wishes to you & your husband,    Nancy

[palms0@hotmail.com]

hi nancy thank you for your feed back we feel so alone and just pushed around from dr to dr, i'm sorry to hear about your problems also. his facial nerve is intact, so they still have no answers as to why this happened, we have been back and they say some people just heal slowly which when you are 45 and healthy is hard to understand. we did go last week to jefferson h/a clinic and the drs started him on elavil and indocin it's only been a week and it seems to be making him really tired. we don't know what to do about getting a gold weight inserted yet or keep waiting, again the dr's really don't have any answers. i't s good to know this site is here it sounds like a be a regular and probably learn more from other pt's than drs
thanks mary ellen

[nancyann]

Hi Mary Ellen:

I've heard people can get the facial paralysis post op because of the swelling on the nerve (from the surgery).  As the swelling goes down, the facial paralysis goes away, sounds like that's what your husband's issue could be;  my nerve was cut on the transverse, as I said it was a mess prior to surgery, didn't respond electrically when stimulated before working on the tumor.
Check with the docs, if his paralysis IS getting better, no reason to do the gold weight yet, unless it's really burning him bad, & is unbearable (as in my case).  The gold weight CAN be removed with movement coming back.

Take care, Nancy

Elavil has antihistaminic effects (like Benadryl), so it will make him tired.    I've read from people on the site they're given steroids for the swelling, but that is one serious medicine, need to watch how long your on it.

[palms0@hotmail.com]

hi bruce
thanks for your kind concern. i wish we would have waited like yourself but what's done is done we just want our lives back.
the dr's really just seem to pass you off from one to the other trying to fix the side effects caused from the surgery they did.
now we are trying to see if anyone else who had retrosig surgery is still having crusting, red lumps on the incision area almost 5 mos post op, it just dosen't seem right to me. i wonder if this is causing all the pain he has in the incision area?
i called the neurosurgeon this am and i'm waiting for a call back.
so glad i found this page to talk to others with the same/similar problems and concerns, you really feel like someone else knows what yu are going thru
thanks again
happy holidays and good health to all
mary ellen

[Captain Deb]

Mary ellen,
Has you hubbie had an MRI to rule out a CSF leak? When my headaches refused to budge, that is one of the first things the neurologist Iwent to did. I couldn't go see my surgeron as he was in California and I'm in NC, but he and my local neuro talked on the phone and worked together to at least rule out the CSF leak.
My incision healed up right away, thanks to my girlfrind who I stayed with in Florida (it was winter up here in the mtn--no walking for me) cleaning it out with hydrogen peroxide and using neosporine on it twice a day.

There is a thread by a man who had a bone infection at his incision site many months post op --use the search bar--it was under the post-treatment category

Capt Deb

[Patti UT]

The post op headaches are the worst. I'm sorry he is experiencing them. Captian Deb has the most experience in trial and error on this one. I jsut suffer through them and take OTC's. usually loose a day or few when the really bad ones come. But wake up with my ?usual evryday pain in the head" everyday.  I just figure it's part of the deal.

Patti ut

[Larry]

Saw my ENT surgeon today. He now flatly refuses to do any more middle fossa or retrisg ops. He says it was the single biggest mistake he ever did (thx for telling me now doc) he only does translab and is now big into wait and watch and is compiling some interesting stats about all this.

Anyway, I had middle fossa 4 years ago - have had debilitating headaches for 4 years, been pumped full of just about every drug and cortizone known to medical science - all to no avail.

Makes ya want ta spit!

Laz

p.s - sorry for the venting but I am about to see my 6th neurosurgeon for yet another opinion and the outcome will be - $300 out of pocket, more money on meds that don't work. You get a little cynical at times.

[Larry]

Cheers Bruce,

Unfortunately, I am resigned to the fact that i will have these headaches forever. learning to deal with them (most of the time).

laz

[Angieshubbie]

My stitches came out too (my body was rejecting them). I have crusties still..... I still bleed sometimes too. 
I had retro in Aug.  My doctors and I have chalked mine up to the blood thinner though. 

I have headaches sometime and I just can't function.  I do have to say that my headaches used to be worse, before surgery.

Angie