Melissa (daydreamer) MRI results

[Melissa778]

I am 3mo. post-op and just had an MRI to check on the remaining tumor.  I'm a little dis-heartened.  My first initial MRI when I was disagnosed showed my tumor to be approx. 1.6X1.6....at the time of surgery doc stated it was close to 2.0X2.0 or a bit more, so either I had some growth or it was initally measured incorrectly.  I had translab on May 15th and everything has gone really well.  The surgical team indicated they had to leave some behind because it was so embedded in my facial nerve.  They indicated it was "very little" and a bit of gamma knife down the road would take care of it.

Well I had my MRI the other day to check up on the "remainder".....measuring 1.5X.5......I guess I'm just diappointed there still seems to be so much left behind after I went through major surgery like that.  I love my docs, they did  a wonderful job and I know it can't be helped that the little bugger embedded itself in my facial nerve....It just really upsets me that there seems to be that much left.  I'm very thankful my outcome to date has been wonderful, it's just disappointing.  I just want it all to be over and done with so I can move on and stop worrying and thinking about it.  Some days it's as if the "thing" has consumed my entire life.

So now I meet with the Radiation Oncologist in September to discuss Gamma Knife.  My question to Gamma Knifers....or anyone who can help with this question.....because the remainder is so embedded in my facial nerve, can/will the gamma knife give me some facial paralysis?

Also, another side note.....my incision is completely healed....however, it still itches like MAD.....anything i can put on it or do to help that???

Melissa

[MAlegant]

Hang in there Melissa.  My doctor told me that sometimes when they debulk the tumor, it stops growing.  You won't know that until a later MRI.  This was the plan for me but it didn't happen that way. GK has the least amount of complications.  And if you do need it, you can be a postie-toastie!

I'm using scar butter (found at Sephora) on my incision, but I think the itching is really healing and there isn't much to be done.  Others will have better suggestions, I'm sure.

Marci

[sgerrard]

because the remainder is so embedded in my facial nerve, can/will the gamma knife give me some facial paralysis?

Probably not. The facial nerve is thankfully quite tolerant of radiation. It is the swelling after, if there is any, that can occasionally give it trouble, but that is usually temporary if it happens at all. Radiation after surgery is not uncommon, and done for just the same reason you may be having it. As a strategy for preserving the facial nerve, it seems to work quite well.

Steve

[Jim Scott]

Hi, Mellisa:

I can understand your disappointment but all is not lost, as it were.  I had a 4.5 cm AN.  The neurosurgeon debulked it (hollowed it out and cut off it's blood supply).  The surgery went well, no complications.  The post-op MRI showed it at 2.8 cm and I was a little disappointed, too.  However, subsequent (planned) FSR treatments did the trick and on my last MRI (August 1st) it showed some slight shrinkage and definite necrosis.  Basically, the AN is dying.  I'm both pleased and relieved, of course. 

My point is that although the surgeons left some tumor behind, radiation can and very likely will finish the job.  Don't despair. 

I'll let GammaKnife veterans respond to your GK question because I have no experience with that procedure.  I can tell you that my very carefully plotted FSR treatments produced no facial paralysis or other complications.  I think this will work out O.K., Melissa.

Jim

[mimoore]

Hi Melissa,
I understand your disappointment as this is something I will need to deal with. I am experiencing temporay facial paralysis and was told that they left some tumor on the facial nerve (tumour rind)  as not to damage it permanently. When I read my operative summary the surgeon stated that there was no good bundle of the 7th nerve. Scary, time will tell. Nerve tested 0.1mA at brainstem.
Anyway your question was a good one about how the GK will affect your facial nerve, I too wondered that and because I may need to go the GK route and having already suffered facial paraylisis would that make a difference?
I am so glad your surgery and recovery are going well. It would be so nice to just put this behind us. Good luck.
Michelle