looking for info. on follow up

[THBKS]

I'm still new to forum so bear with me

I have read posts of regrowth and also of more than one surgery.
This made me wonder is that because of some being left behind. I know that is done on purpose sometimes.
Or can there also be regrowth from what was suppose to have been a complete removal?

After AN surgery is it common practice to go back on regular basis
for scans?

I had ct scan before surgery
then ct scan a month or so after surgery
then I was discharged from the service, went home so did not go for any AN follow up.

Can't have MRI was going to have one for back problems a few years ago.
They took x ray of body and
said I had metal clips in head from the surgery. I'm guessing they use a different material than metal these days.


Tumor 3 cm, removed 1981, VII and VIII nerve sectioned
complete left facial palsy
inability to close left eye lid completely
dizzy, unbalanced, etc.
 
Even though its been 34 years since surgery I'm new to the medical terms.
I have learned more in the last few weeks than the whole 34 years.
I just came home and went on with the way I was.
Don't get me wrong I have had my problems but I was 22 when I had surgery so I have lived a lot more years
with the problems than without.
people say they wish they were back like they use to be.
I've been this way so long I say I wonder what it would be like not to be like this.

Thanks

[nancyann]

hi THBKS: Both my nerves were severed too, was told the tumor was completely removed.  I had f/u MRI's the first 3 years, then stopped on my own.  I was told to f/u for 5 years.  They now use titanium plates, etc., so that probably wasn't available when you had your surgery.
If you're concerned about regrowth, ask a neurologist what can be done MRI-wise.  CT scans don't always pick up these tumors.  I had one for headaches 1 year before the MRI & it didn't pick up the tumor (it had been there for years).
We've had a few young people on this site have large ANs also, with subsequent paralysis - the 2 I remember with paralysis had further nerve surgery to help combat the paralysis.  I feel for anyone who had this at a young age, like you.  I was 50 y.o. when I had my AN removed, so it's been a helluva ride but I know nothing like someone who is young goes through....

[THBKS]

nancyann
thanks
You have helped a lot, I think if I can get this eye issue dealt with I will check into
getting a scan done.

will probably have to be CT scan since metal clips are inside head.
still have hole in back of head never did have a plate put in to cover that
as I said after surgery scared of any more surgery.
Thanks

[alabamajane]

Hi THBKS,
I have been reading several of your posts about eye problems and your surgery so long ago. I'm sorry you are experiencing so much eye pain recently.
I would agree with much of what Nancyann has told you on several of your posts. Here's my story,,,

I had translab surgery in 2011 for a 2.8 cm tumor. I had been on wait and watch ( w&w ,, if you see that on here),, for 3 years after diagnosis. My tumor had grown through my facial nerve #7,, so it had to be severed to remove tumor. I stayed over the weekend in the hospital and on Monday morning I had the 12/7 , hypoglossal nerve anastomoses you were offered. I'm so glad I did!! I got VERY good facial tone and movement from it. I did have a gold weight implanted shortly after leaving hospital but only kept it in for a year as eye was able to close well enough on its own after nerves regenerated. I'm really not sure if after this length of time this would still be an option for you because as I remember the Dr said it needed to be done before nerve endings died.

I don't have eye issues any longer,, some drops occasionally. I started out using Refresh ointment at night and gel drops during day. ( I liked them better than regular lubricating drops). I do like to use a sleep mask at night. Just a regular eye mask from pharmacy that helps to keep my eye closed and light out. It has really helped me.
I don't know much about the T-3 surgery. I don't have a "full" smile either,, I call it my "pirate" look! One corner of my mouth doesn't open very far. When I asked Dr about what could be done,, he suggested the Gracilis Free Flap surgery. He said Dr Tessa Hadlock at Mass. ear and Eye was the best for it. I researched it some, but decided I didn't want to do any more surgery. Basically as I remember, they take a thigh muscle and implant it in your cheek and attach it to muscles instead of a cranial nerve,, I think,,, might be an option for you.

I do think you should find a Dr to do some sort of follow up with. I have an annual MRI just to check for regrowth. Most do for several years I believe. Not sure what a CT would tell them though if you can't have MRIs ,,,

Hope some of this has helped you,,,, just wanted to chime in just in case it would.
Make sure you protect your cornea though. Keep eye wet and check into the bubble for nighttime.

Good luck,, keep asking and we will help how we can.
Jane

[THBKS]

alabamajane
I feel lucky I went so long without this kind of pain.
I cant imagine the people that had that kind of pain for very long at all.

Been snowed in for several days but will check on some type of patch tomorrow.

as far as medical I'm waiting on the eye Dr. to get back to me.

As far as Scans I think I will have to set it up through VA and since I haven't
 been going to them I'm sure that will be a long process.

from my best memory after surgery while still in hospital, I went to store and met a woman that had
AN surgery a few years earlier, her eye was sewed completely or close to it.
she also said they had hooked nerve or muscle (cant remember which)from (shoulder, arm)
her face was no better and had messed her arm up.

so when they came around to sew eye I said no.
Face I said no and they said they didn't do it that way anymore, that they used the tongue.
I said no, processed out of service and came home.

now all these years later I start researching and find out I have 34 years of experiences and stories
after surgery.
but almost zero on the knowledge side.


If you don't mind when you say 12/7 what does that mean?
and thanks for the reply.

[alabamajane]

The " 12/7" is the hypoglossal nerve graft that they offered you. ( 12th nerve being hypoglossal). They connected my  facial nerve to tongue nerve. My Dr had done another lady with the facial to shoulder nerve. (Forgot why he said they didn't want to do it to her tongue). Said she just slightly raises her shoulder , kinda shrugs, to smile! Whereas I bite down and put my tongue to roof of my mouth to smile. Somewhat unconsciously. I have gotten very good movement though on my cheek and eye area from it. The graft allowed the facial nerve to regenerate and activate the facial muscles for tone and movement.

Another thing I didn't mention,, I did not have my eye sewn shut nor the lower lid tuck. Haven't needed it. But I can see how it would help if you don't have much tone on your cheek or eye area. I do have a few shots of Botox around my eye every 4 months to help with involuntary squinting. Makes area relax some and more symmetrical.
Does that help answer your question?? Hope so! Good luck moving forward.
(Sorry you are snowed in,,   ,,, hope you get along ok!)

[THBKS]

alabamajane
I just figured by now the procedure might be totally different,
but sounds basically the same.
makes a lot more sense to me now, thanks

been out of the system so long
I went to VA rep. this morning, he enrolled me in the VA medical system so in a few weeks I might
at least see if they will set me up with some test etc. Have to start somewhere.

since surgery I have always been dizzy, some headaches, some eye problems.
but here lately I'm having all the above problems but they are different.
I don't know maybe one of the problems is triggering the others.