I never thought anything like this existed

[Stina44]

Hi, i am 23, 8 years post op and i never thought anything like this existed... All that time feeling alone in my situation, u all were right here. Anyways about me. I was 14 when i was diagnosed with a golf ball sized AN. 4 days later i had surgery. When i woke up after my 12 hour surgery i had no hearing in my left ear and couldnt move the left side of my face. I later learned that my auditory nerve was completely severed and my facial nerve was skimmed, in order to remove as much of the tumor as possible. And i had titanium mesh in my head because my surgeon made the smallest incision possible (so he wouldnt have to shave my head, because i was 14 and he understood) so my skull was chipped away instead of a large piece being taken out. This ment there was nothing to put back. I had the mesh for 6 months before i had it taken out. My dr suspected it was leeching toxins and thats why it was so painful. Unfortunately having it out didnt do much for the pain. I have been in pain every minute since i had my first surgery. I managed to finish high school, but not with out alot of special arrangements. I have never had a job, my pain is constant and unpredictable. I have consistant pain and then i get stabs in random places in my head. Alot of times it feels like i can feel the pain traveling down my nerves... I tried narcotics(prescription) but the amount they helped was not worth the damage to my liver from the high dosage i needed for it to help. I tried lots of medications to find something that might help. I currently take lyrica, which helps some, but if i dont have any for one reson of another i start to with drawl. Bad. Shaking and excruciating pain and nausea. I tried nerve blocks, by the time the swelling and pain from the injection stopped, the nerve block had worn off.
My second nerve block worked really well... Fo a few hours. But for a few hours i was pain free for the first time in 5 years. Unfortunately that was the only one that worked..
Anyway... Here i am 8 years later, i still have no hearing in my left ear. I regaind a decent amount of movenemt on the left side of my face. And i am constant pain and unable to work. Im not sure what im looking for no here... Maybe someone to relate? Maybe someone who can tell me why im in so much pain because my drs really dont know why. Maybe just someone to tell me im not alone in all this.... Anyone??

[Janey]

Hi Stina44,
What an unfortunate outcome you have had with your AN removal! I am so sorry that, at such
a young age, you've suffered such pain and disability.  I am much older than you (61), and had
Gamma Knife earlier this year.  It has not been a picnic, but certainly nothing like what you
are going through.  Hopefully, others on the forum who've had surgery can offer you more
advice.   In the meantime, do not feel alone in this - we are all here to support one another.
God bless you.

[PaulW]

Wow sorry to hear about this.
Headaches after AN surgery are complex..
Depending on the cause of the headache, I have know of people getting relief from Botox injections into the scalp.
Scar tissue that has formed around nerves of the scalp can cause ongoing headaches.
I think you should try to pursue the nerve block option further. It may identify the nerve that is causing the headache.
The nerve blocks often consist of an anesthetic and/or Botox, so if you have had some relief that's a very good sign.

So look into Botox as a possible option.
Some people also respond well to electrical stimulation of the nerve, and have a small device implanted to stimulate the nerve.

Maybe worth doctors checking out the incision site, as when the scalp is put back the nerves sometimes don't quite line up. this can cause scarring, pain/headaches too...
Good luck and hope you find an answer.

[LakeErie]

Did you have retrosigmoid surgery? Dr Ducic at Georgetown resected occipital nerves in some people with headaches after retrosigmoid removal of AN's and fixed their problems.
My surgeon used a minimally invasive technique to avoid the both the greater and lesser occiptal nerves
as he believed that the headaches came from occipital nerve damage.
I think Dr Ducic may have moved somewhere to another medical center recently but I cannot be sure.
Her is a link i find at random about the occipital neuralgia problem from AN removal to get you started in case it applies to your situation: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2011.02068.x/abstract

[robertweeks]

Hi.  I cannot offer you any useful advice about specific treatments that might help your AN recovery.  Some of the previous replies do seem to offer some suggestions that might be useful, so I will leave that to them.  Like another response above, I had surgery last year and have continuing problems, though nothing as severe as what you describe.  To have to face all of this at your young age (I am 60) is horrific.  When I was in my twenties I suffered a back injury that crippled me for years.  I spent most of my free time in doctors' offices and could find nothing to relieve the pain.  I did work, because I had no choice, and sat huddled in pain in a cubicle trying to get through the day until I could go home and lie down.  I ate fast food in bed and watched TV out of the corner of my eye because it hurt too much to turn my head.  So, yes, I get that your pain is horrible

But, it got better.  The body will tend to heal itself in time.  My back injury never resolved completely, but eventually things got better.  One thing I found that made a difference was that I had to connect to and acknowledge how angry I was at the way it was.  I am NOT saying anything like its in your head and get over it.  That is completely stupid.  The pain is real.  But it was also true that my anger was blocking my healing by making me continue to hold tightly in my body.  It wasn't until after I recognized the anger and started letting go and accepting that things started to get better.

I can't say that any of this would apply to you at all, that is not my place.  But maybe there might be something to gain from going inside and looking at your emotional responses to the situation.  It certainly couldn't hurt, even if not helpful.  Support groups can help with this sort of thing.  It took years, but I did get better and today I feel very lucky to have had the life and love I have.  Life is a difficult, slow and complex journey, but it is also enormously rewarding. 

[mcrue]

Stina44,

Dr. Michael Seidman, a surgeon who spoke at my first ANA support group last year, does a lot of "off label" treatments/surgeries regarding AN's.

Dr. Seidman once injected cat tranquilizer (ketamine) into an AN patient to help alleviate their pain/tinnitus.

Dr. Seidman claims one of his patients can turn their tinnitus on-and-off like a light switch, after Dr. Seidman performed a special experimental surgery.

Anyways, you might want to contact Dr. Seidman and explain your situation.

http://www.headnecksurgeons.com/medical-team/physicians/michael-d-seidman-md-facs

[Sheba]

Hi - I just want to give you a virtual hug, I am so sorry what you are dealing with.  It's just not right that some people have to endure constant pain for long long time.

It must be hard trying one option after another and not getting relief.

Have you tried seeing different doctors?  they all have different experience and biases etc., so shopping around you may find a solution?

The earlier suggestion about seeing if the surgery impinged or damaged the occipital nerve is also worth pursuing, I've heard of others tracking their pain down to that.

I hope you find relief !!