8 Month MRI and Doc visits and very confused ????

[kzanana]

Well the good news at 8 months my MRI shows no tumor or any sign of abnormality except a large indentation in my scull.
   I am however left with major headaches on my AN side,dizziness and nausea and I still walk like a drunken sailor but according to both my ear surgeon and neurosurgeon, those problems have nothing to do with my brain surgery and I should be feeling perfect by now ? What ?  For the last 18 months I have logged on to this site to get questions answered,to see if others have the same symptoms as I and to  be reassured there is a light at the end of the tunnel. Today I was basically told by a Doctor that has performed over 1000 AN surgeries, he has never seen a case like mine in all his time  Why was I walking funny ? because I am dizzy 24/7. The  back of my head feels like it is in a vice. If I sneeze or cough it feels like my head will blow off, but it has NOTHING to do with my surgery ??
       He sends me over to my ear surgeon and she says I might have TMJ and that could cause all the pain, or I could have a cold
( for 8 months? ) or maybe something is wrong with my good ear, we should start tests ( CRAP) Maybe I just need to take an antihistamine.   These are the doctors that performed a 9 1/2 hour surgery after making a 9 inch incision into my head and drilling a silver dollar size hole into my skull and successfully removed a dime size tumor and my balance nerve, that left me deaf on the right side, but today they are baffled at my symptoms that I have had since the surgery.   My balance has greatly improved over the last 8 months but the pain hasn't.I still walk with a stagger. It is Not as bad as right after surgery but still constant.
      They say, maybe my symptoms are from an earlier injury, since I was in a car accident in 94 and have neck and shoulder pain. I argued I was fine befor the surgery and not fine since. 6 months ago they said it could take up to 2 years to get back to my new normal and today they are baffled I still have any problems at all   I am so confused. Are these my doctors or am I in the twilight zone ?
    What do I do now ?? I know my good ear is fine, no AN there in the MRI from today. No inner ear infection so why start tests ??
I am so frustrated right now I cannot think straight. I know my problems ARE from the surgery. I read all of your complaints and say, yes that the same with me, then feel better knowing I am on the road to mending. There is a light at the end of the tunnel, but today the train went off the track. NOW WHAT ?

[MAlegant]

I think it's time for new doctors.  Just my opinion.
Best,
Marci

[tenai98]

I know what you mean. My doc doesnt understand why I have these sudden jolts of pain in my forehead, eye socket and jaw. As well as I now get this knot (like a brain freese without the pain inensity) in my head.  I still have varying degrees of wonky head and headaches.  When I inquired about work, he said yes go back but then said he was being facetious. When I got home I forgot he said "facetious" and I was so exiceted at the prospect of going back to work, that I called my boss and told him I was returning.  Only to remember the next day FACETIOUS....grrrrrrr
My doc told me with brain trauma it can take many many months for the brain to recouperate. Only time will tell
JO

[CHD63]

Kathy .....

I read back through your earlier posts and I do not see what approach type of surgery you had ..... was it retrosigmoid (sub occipital), middle fossa, or translab?  Not that it matters a whole lot now, but just curious.

So sorry you are continuing to have troubling issues ..... not fair!  I am relieved that your MRI showed no tumor or other abnormality ..... now to deal with the aftermath symptoms.

You mentioned having some balance therapy for a few weeks, but I'm wondering if you need to seek out a good vestibular therapist and spend some intensive time to retrain your brain to accept the signals it is receiving from only one side now.  Have you had any vestibular testing done to determine the quality of signals you are getting from your "good" side?

Along with that you need to get the headaches under control.  Can you ask your primary care physician to refer you to a pain clinic?  Many of the people of this Forum have had good results from a variety of means ..... some with medication, some with other techniques.

Doctors can say all they want about it not being from the surgery ...... just remember often doctors are just looking at parts of the package; brain, skull, ears, balance nerves, etc. ..... and not the total human being, which includes emotions, frustrations, etc.

Although terribly frustrating to continue to feel so lousy, please know that you will feel better ..... sooner is better than later!!

Hang in there and my thoughts and prayers are with you.

Clarice

[epc1970]

Kathy
I have had a similar situation happen to me: I had my surgery on the West coast-I live in Maine. My surgeon in Oregon has been wonderfual at keeping in contact with me but there is only so much he can do from 3,000 miles away!  When I was 6 months post op, I thought it would be a good idea to have a clinical checkup to discuss some of my concerns-neck,jaw pain and headaches. I went to a neurosurgen/ENT team in Boston who treat AN patients regularly. When I brought up the jaw pain the response I received was "Well, I've never heard about that before" So like you I left feeling like either I was crazy or having some sort of abnormal issue. I suffered another month or two before going to my primary care Dr who referred my to an osteopathic spine specialist. With a combonation of crainal sacral therapy, gentle OMT and medication (tramadol) my issues are under much better control. At my last appt, I was thanking this Dr for taking my complaints seriously. He said that most surgeons are really not well trained nor are they equiped with the resources to handle ongoing post surgical issues. So my advice is to not suffer like I did and actively search out someone who can help you-as previously suggested, vestibular rehab might be worth a try. This forum is a wealth of information-had I used it to my advantage I would have known that others expirence jaw pain as well and I would have taken action sooner!!

[Jim Scott]

Hi, Kathy ~

I'm very sorry to learn of your troubles.  Despite what your surgeons claim, this must have some relation to your AN removal surgery.  Their response of 'you shouldn't be having any of these problems' is maddening but somewhat typical, I'm afraid.  I have to agree with both Clarice and 'epc' that you should consider consulting other doctors at this point because your surgeons are clearly unable to help you.  Frankly, although some AN surgery patients do have ongoing post-op issues, I doubt you'll get any relief just waiting for it for happen, with tests on your 'good' ear or by taking antihistamines.  These suggestions from your doctors are clearly inadequate, to be kind about it.  I'm surprised they haven't told you your problems were due to 'stress', always a favorite excuse when doctors have no idea why you're experiencing specific problems but don't want to come out and admit it.  Well, at least the MRI was clear, which is always a relief and shows that whatever the source of your discomfort may be, it isn't from a tumor.  I hope and will pray that you can find a compassionate, knowledgeable doctor that will listen to you and help you find a way back to normalcy. 

Jim 

[leapyrtwins]

My two cents - get yourself to a different doctor ASAP.

Please keep us updated.

Best,

Jan

[another NY postie]

This is just a thought...a person I spoke to who had surgery said that his vestibular was either only cut on superior or inferior (can't remember specifics) but for whatever reason, his vestibular did not die off so he said it was like his brain was getting mixed messages/short-circuited so it was not adapting to the one side and he had horrible balance issues.  He was working with a neurontologist in NYC to figure it out.  Said it was a strange fluke but happened sometimes...I have not see his name on this site (a friend gave me his number when I was diagnosed) but maybe you have that going on also so your other side isn't compensating?

[kzanana]

Thank you so much for that info. I have taken the advice of others as well and  was refered to another neurologist that deals with head trauma and pain. My Family Doc said the very same thing to me Friday My good side is not compensating for the loss.  Thank goodness for this forum. everyones comments have been VERY helpful.