1 year post GK check at Mayo

[Joey]

   Hi all -  Well, I'll get right to the point.  Dr. Link pulled up the MRI taken on 10-2-08 and aligned it side by side with the MRI taken on 10-26-09.  The tumor has darkened and shrinkage was quite apparent.  He deemed the treatment successful and said we'll see you in a year for another MRI, go and have a life.  The white shadow area noted on the MRI at 6 mos. was unchanged, and he reiterated it was not of any concern.  The last 6 months were not what I'd call uneventful.  I had a runaway case of shingles, which was coincidentally on the GK side; and plagued with those migraines with aura.   Have been feeling better lately and Monday's visit has taken a lot off my mind.  I feel fortunate and grateful.

Dr. Driscoll, who works closely with Dr. Link, then came in to discuss my ear structure on the GK side.  I have a perforated eardrum, and they were thinking all along that it might merit fixing if my hearing stabilized.  My hearing test indicated that my hearing is slightly better than it was; the word discrimination came up slightly.  He wants to graft the eardrum and explore the ear canal and says he that while this may improve things a bit, the hearing will probably never be normal.  He spoke of the "boneyard" of prosthetic ear bone pieces and said they could fix various things, depending on what they find.  He thinks more was going on with the hearing than the AN alone and described this surgery as potentially exploratory.   I'm a little afraid to mess with things, to be honest.  Still thinking about this.  If anyone has any input to share, I'd love hearing it.

So that's where it at; I'm just sitting here thinking about it all........   Joey

[Jim Scott]

Joey ~

Thanks for the update - and congratulations on the great news from the MRI scan!  You are indeed fortunate and I think it's right to be grateful.  I am and have been ever since I came out of AN surgery with no discernible deficits and went through 26 FSR treatments with no problems.  With each MRI scan, I've seen my AN heading toward oblivion.  It's a great experience and one I'm pleased to see other AN patients enjoy! 

I won't presume to offer you specific advice about whether you should proceed with ear surgery but I can understand your inclination to let things be in that area.   I wouldn't rush into anything at this point, that's for sure.  If your hearing is serviceable and ear surgery would be mostly exploratory, my instinct is to pass.  But that's me.  I'm sure you'll come to a good decision that you can be comfortable with. 
   
Jim

[leapyrtwins]

Joey -

major congratulations on the necrosis!  Happy day 

I'm not familiar with the ear surgery you mention in your post, but the word "exploratory" personally concerns me.

If you decide to go this route, please make sure you do your research and perhaps talk to someone else who's had the surgery.

I'm not saying this surgery is a bad thing, just check it out before you sign up.

Best,

Jan

[mk]

Joey,

congratulations for an excellent report. This will certainly take some weight off your shoulders. Sorry you had these problems (who knows if they are or not GK related), but I am glad you have been feeling better lately.

Marianna

[Mickey]

Congrats on the good news! Mickey

[lawmama]

Joey,

Congraulations on the good news!!!  My surgeon actually mentioned shingles as one of those things that can come up post-treatment.  Interesting!  Sorry you had to suffer through it and the other unpleasant problems, but I'm very glad to hear that you are at least feeling a little better lately and THRILLED for you that your GK appears to have been succesful. 

Lyn

[Joey]

Thank you everyone for your kind thoughts and well wishes.   My GK results make me realize there is a light at the end of the long dark tunnel!  I am still pondering the issue of possible ear surgery and I'm waiting to hear from some contacts about that.  (Isn't that a pun?)

Yeah, I probably should not have been surprised about the shingles fiasco.  Turned up as a road rash looking bunch of angry welts that quickly turned to scabs, both on my side and on the side of my face.  As long as I didn't touch/scratch it, it cleared within 10 days, leaving in its wake some unbearable nerve pain that wouldn't cease.  Following 2 weeks of that, I awoke one day to having extreme tingling and pain in both hands and feet.   That worried me more than anything and it kept up for about about 2 solid months.  In the meantime, I was doing all kinds of research and trying to clean up my act:  gave up artificial sweeteners, deodorant containing aluminum products, checked my cookware, you name it.  My husband thought I was truly crazy, but that kind of pain makes you willing to try the easy things first.  My pharmacist suggested it was diabetic nerve pain.  I did finally go to the PCP and he ran bloodwork which revealed NOTHING.    I was kind of leaning toward the diabetic nerve pain theory, but the blood sugar levels were pretty normal.   My chiropractor prescribed an assortment of B vitamins.   I was also having nightmares from which I'd waken with hands and feet clenching in painful spasms.

The neurologist attributed all of it to stress.  I did have kind of an awful summer - my elderly Mom fell and broke her hip and we were told she might not make it thru the surgery - they ended up doing a total hip replacement on her.  She is in the end stages of Parkinson's disease, which is heartbreaking enough.  I work at a place that does not allow flexibility and I was being reprimanded by an unforgiving boss for getting calls from my siblings about Mom's progress during her surgery and being transferred to various care facilities during this difficult time.   The biggest surprise:  she's back at home with caregivers, and has recovered fairly well, given the circumstances. 

I know I should have gone in and gotten something for the shingles; perhaps the rest of the trouble could have been avoided.  Part of me thinks this could be a symptom of panic attacks.  I was kind of a mess, but doing better now.

Thanking God and everybody here who truly get it...... Joey
 

[Joey]

I decided to post here about my "recent" ear surgery just to make things easier to understand - I did end up opting for the ear surgery recommended by my ENT, Dr. Driscoll at Mayo Clinic.  I had surgery on the AN side ear on 11-12-09 after much deliberation and research.  Dr. Driscoll grafted the eardrum and went in and removed several bundles of scar tissue that had adhered to the bones over the years during my many bouts of ear infections.  I had general anesthesia and did well, going home that night.  The only funny thing that occurred, and I do mean humerous, was the anesthesiologist coming in prior to surgery all puzzled asking me what type of anesthesia I had for gamma knife as he could find no record.  And of course it was fun telling him pretty much nothing was used; I think I was given Ativan, but as I remember it didn't put me out, just kind of felt llike drinking a light beer.   Then he asked me if I was born at Mayo Clinic as I had such a low number, similar to his.  I was hospitalized many times there as a child due to ear infections so I shared that history with him.   Other than feeling a bit dizzy and nauseous for a day or two following surgery, with minor intermittent ear pain, I did ok.  Was back at work in a week.  Had some drainage and whatnot and had to be outrageously careful not to get water anywhere near it.

I had the packing removed a couple weeks ago, and noticed I could actually hear pretty well.  More of the stitches and debris have fallen out today and I note more improvement still.  Was told by Dr. Driscoll I am in healing mode until the mid-March, when I'll go back for another check with him and a date with the audiologist.  At this point in time, I'm happy I went ahead with it.  I am hearing things that I never noticed before and I've had at least 3 people tell me they can notice a difference in just the day to day stuff at work, and I'm unbelievably glad I went ahead and did it. 

For the record!   ~  Joey

[Jim Scott]

Joey ~

Thanks so much for that interesting update on your ear surgery, which seems to have been quite successful.  Congratulations!  You were bold to go ahead with it but the decision was certainly the right one for you.  Well done! 

Jim

[leapyrtwins]

Joey -

thanks for returning to the Forum to tell us about your surgery.

Sounds like it was very successful, which is wonderful news!

Congratulations!

Jan

[mk]

Hi Joey,

good to hear from you. Well, this sounds like a real success story, and we love these here.

Keep up the good job.

Marianna