6 weeks post

[rjp]

Hello.
Here are my results, this is this the kind of info I was looking for before my surgery so I thought Id post it:

My stats:
35yrs old
3 cm AN left side
Surgery 10/23/06 at OHSU, in Portland OR.

Results:
90% was able to be removed, will need 2nd surgery in 6 months to a year to get balance.
Hearing left side was lost. 
After 6 weeks, still have facial numbness,  so Im not able to make good use out of anything on left side, including left eye.
Dr says no nerves will cut, so it should come back within 6 months accordint to him.    I do  have some feeling on left side just no movement.   

Also, I was stuck in ICU for 12 days which was the most difficult part, but once home I regained strenght quickly.
My brain did not want to drain fluid, and after a week they were about to put a stint or shunt into my head, but just before they decided to do this, then suddenly my head started draining normally on its own.  One small victory I guess.

Now as of yesterday Im back to work (desk job), and just waiting for numbess to wear off.
I still have fatigue issues, but they seem to get a little better each day.

I had some headaches during 2 and 3rd week, but they have gone away.
I did not have any CSF leaks, blance issues, or other complications.
Still  avoiding lifting and pretty much taking it as easy as possibe.

RJP

[Captain Deb]

RJP--have any of your docs talked about radiosurgery to get the rest of your tumor? There are a few of us here that have gone that route with success.
Capt Deb

[Jim Scott]

rjp:

Hi.

I had a large (4.5 cm) AN removed in June (see my signature).  The surgeon, following a plan we had both agreed on -  using the retrosigmoisd approach - removed about half the tumor and left the rest to avoid nerve damage.  3 months later, after careful and precise 'plotting' (using an MRI and a CAT scans) my neurosurgeon and the radiation oncologist he works with, set up a series of 26 'fractionalized' radiation (low-dose) treatments to kill the remaining tumor cells.  I finished those in mid-October. 

I had no facial nerve damage to speak of, post-op (facial nerve monitoring was performed during my surgery).  For all practical purposes, I regained my balance and other functions I had lost - with the exception of my hearing on the 'AN side' - within weeks.  I had no ill effects from the radiation treatments.  Now, six months post-op, I'm doing fine.  I'll have another MRI in April to keep track of the tumor and make sure there is no re-growth.  My doctors claim that this surgery/radiation approach has been 100% successful and they are delighted by my rapid progress back to normalcy.  I highly recommend it. 

I sincerely hope that, should you undergo another surgery, it will be without complications - and totally successful.


Jim[/color]

[rjp]

Thanks for the replies, I went with surgery over radiation, mostly due to my younger age, and the location of it pressing on my brain stem.  These factors made surgery the more logicial choice, and OHSU does more of these ANs than just about anywhere.   I had hoped to be done with it after 1 surgery, but it was not meant to be.

Now post-op I suppose I have the same choice again, for the 10% remaining.  Maybe cyber-knife is more of a possibility now because the remainding tumor must be pretty small.  Im really not sure, I will talk to both sides again when it comes time.

I think a lot depends on how well my nerves heal in the next months.  So Ill keep Ill post again after a few more months.

[flier58]

Hi rjp,
I went over the stats that you posted and wondered how 2.5mm tumor could press on the stem.  Was it supposed to be 2.5 cm?
Regardless, I am happy that yu are doing well and hope that will continue to do so.
Flier58

[rjp]

yes you are right, my tumor was 3 cm, not mm.  I edited the above post. Thanks.       It was originally described as a ping pong ball my the first Dr that saw my MRI.   I guess it was about an inch in diamter, I never actually looked at the MRI.

some other things I forgot to mention about my post op experience:

I had a gold weight put into my eye about 3-4 days after surgery.
It seems to be healing nicely and gives my eye closure at night. 

I recently noticed I seem more sensitive to sunlight, so sunglasses are a must outside.

thats about it, during my first 2-3 weeks home, I had a lot of minor things...
really bad mouth dryness at night, extra trips to the bathroom at night, headaches, leg cramps,  huge appetitie,
but most of these are gone now.

Just waiting fot the old face and eye to come back now.


Thanks
RJP

[amylynn]

Dear rjp,
I will be 6 weeks post-op on thursday.  I felt great 6 days after my surgery then flew home and woke up day 11 with left sided facial paralysis. I had also had lots of energy from the steroids for three of the post op weeks ,then" hit a wall" -head throbbing non stop-thought it would pop off, shaking and weakness for two days. I spent the night in the hospital the friday after Thanksgiving. It was hard to go from feeling like I was getting better to having trouble combing my hair.  My face is changing and improving and I felt better yesterday than I had in a few weeks.I hear from other posties that it will keep getting better.  You had a lot rougher hospital stay than I did.  Hang in there!