Are there any doctors who can help?

[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

[Rc Moser]

Sorry your is so much pain. That has to suck big time! I have some of your problems, but way less painfull. I too have a hard time sleeping without tossing and turning and usually pain wakes me up and I roll over, Headache's most of the time with a few turning into migraine's, ear rushing sounds, unusual head pains, and feeling yuckie most of the time.

As far as Doctor's. It depend IMO on the Doctors, how big the tumor was and it's location, how long it has been growing and pushing on the nerves, how sticky or hard it was to get off the nerves, if any damage was done during the operation, and Basicly I want to say the experience of the Surgeron's.. IMO two years out you shouldn't be having that much pain. The only thing I can think of is keep trying different doctor's till you get some results. I feel like a wimp compaired to your suffering.

[Larry]

Barbara,

i am 3.5 years post op with debilitating headaches as well. My view is that its not the AN (because i never had headaches before my op, but its the way the surgeion cuts the muscles and scalp etc.
There is another thread on this board titled headaches. You may want to look at that to get some ideas on treatments

[Kathleen_Mc]

barbjo: One of the treatments I have been on that was effective was one ordered by my neurologist, a very small dose of an antidepressant and also at an other time a very small dose of an antihypertensive. These are used in people who have migraine headaches as prevention and I did find them helpful, I was unable to tolerate the side effects though and had to stop. Your family doctor could even order them. They were Amitryptaline (I'm not sure of the correct spelling) and Inderal, both to be used in very small doses. Just a suggestion that maybe hasn't been looked at. Kathleen

[russ]

Hi Barbjo!
  Just wondering if you had the sub occiptital ( retro-sigmoid ) approach? Those do seem to suffer more post op headaches.
  Maybe get another opinion and after two years, another MRI?
  Russ

[Vincent87]

Barjo:  My mom has been lucky in that she's not had migranes.  Yes she's in a nursing home and has been (three months following GK), yes she has hydrocephalus, yes she has a shunt, yes she has the balance of a five month old baby.  But pain is pain.  I can't possibly imagine what each day is for you.  I've actually heard that injections of Botox into the scalp help with migranes.  This reminds me of when my older sister became infected TWICE with lyme disease.  Each symptom had to be treated.  Perhaps the next step is to see a doctor who treats specifically migranes.  I wish you relief and that tomorrow is a better day than today.

[Captain Deb]

Hi Barbjo
I was in your same situation after a year and I had another MRI to rule out a CSF leak.  Have you contacted your surgeon?
Also do you have a family history of migraine?  Sometimes this surgery can kick your already existing migraine mechanism into overdrive.  There is a great book you can get from Amazon called "Understanding Migraine" by Stewart J. Tepper.

After being on Topamax, and  Inderal as preventatives, I was able to stop using them as they just started to fade away after about 3 years.  I still get an occaisional one about every 3 to 4 weeks, but I use Zomig inhalant which ,if I take it really early, prevents it from getting bad, or if I take it after the pain has gotten bad, knocks it out in a few hours.  Beware of rebound headaches, though--can be triggered by overuse of narcs or OTCs.

I was in bed for the better part of 2 1/2 years, but I'm much better these days and able to work again.

I have heard of a Dr. Jackler in California who specializes in post srug headaches and was about to contact him when these buggers just started to fade away.

Captain Deb

[sunshine16]

I just have a question.  Did you experience any mild or less painful headache prior to this?  'Coz see my concern is, I didn't experience headaches prior and for 3 1/2 months post op, no headaches UNTIL......  the other day, my left side (AN side)  just started to be painful.  It lasted a few seconds and that's it.  So far, haven't experience that pain again. So, I'm really nervous, scared, very concern.Should I have something to worry about?  I have read a lot of posting here who have or had migraines....... 

[Captain Deb]

Myla,
are you asking me or Barb?
I did have migraines prior to surgery altho I didn't know they were migraines until I did some research on them.  My mother had them as well.
See my post on pre/post op migraines in the general discussion.
Capt Deb

[Larry]

Myla,

My headaches fluctuate for no apparant reason. I always have a mild headache (even after many drugs and treatments) but occaisonally, it will be debilitating. Thumping pain and not just where the AN was / is, it can refer to other parts of my head. This is similiar to a back injury where yuou can have referred pain to other parts of your body.

If you feel really threatened by it , then don't suffer in silience, get another MRI done. Your surgeon will probably try to convince you to not have one but you be adamant about it.

Larry

[rntiggergirl]

Hi-
I also had severe headaches that went from my ear to my temple and around my eye. I was diagnosed with neuralgia and was started on neurontin. What a difference!!! I still have mild to moderate headaches at times but not the severe nerve pain. It really helped me.
Cheryl