Surgery scheduled for 11/13.

[millie]

Ken-  my doctor told me my facial muscles on the left side (trans-lab, left side) would "wax and wane."  My surgery was October 17th and I can say every day is a little better.  Have a safe trip home on Thanksgiving.  Mil

[It is what it is]

Happy Thanksgiving to all.  I'm grateful for you and this list. 

Karen

[dtorres135]

Glad to see the surgery went well.  Here's a question. what if the doctor told you that you were a good candidate for both surgery and gamma knife and said to you if you were 20 I would recommend surgery but now that you are approaching 50, you should go the gamma knife route because gk has been around for 30 years and the long term effect although there are findings of some are still not clear.  I say well although I'm approaching 50 everything about me is 20.  It has steered me towards surgery but I'm still confused.

[leapyrtwins]

d -

kind of confused by your post, but wanted to note that some docs - typically those who don't know a whole lot about radiation - think that it's dangerous for young people to have radiation.  Lots of myths still exist.

Jan

[kmr1969]

D,

I was in the same boat as you.  Had 2 recommendations for surgery and 2 recommendations for GK.

To me it came down to being rid of the tumor.  I will be the first to admit that I was very fearful of surgery.  I am 43 with 2 young boys and all I could think was that I wouldn't be around post surgery or that I would be disabled to the point of not being able to be a good father.  Of course, I knew that realistically either of those very poor outcomes were very unlikely to occur, but human nature doesn't follow logic.

You need to ask yourself what solution are you most comfortable with?  It took me almost 3 months to answer that question and I know it is agonizingly hard to do, but you will do it.  Once I made my decision my anxiety did not lessen, but I also didn't have any second thoughts and when I was waiting to be taken into surgery I was at peace and ready to have it done.

Please ask any questions as I am happy to give my $.02 plus I have a lot of time on my hands.

Happy Thanksgiving All,

Ken

[It is what it is]

I'd just like to say that 50 is very young !!!!! 

[kmr1969]

Minor setback today as when my stitches were removed there was a small leak at the bottom of the incision.

Had to be re-stitched and re-pressure wrapped, and now sit tight for another 36 hours.

Bummer, but what can you do.  Disappointed, but not discouraged.

Will meet with a doc first thing on Friday morning and as long as there is no sign of leaking should be cleared to fly.

For tonight and tomorrow, I have to try and remember how to get comfortable with my big, white hat.

Ken

[dtorres135]

have you had any other complications.  what size was your tumor?  How long was the surgery?  thinking of going to House Clinic for a fourth and probably final opinion.  Much anxiety.  I'm told its a six week recovery.  Are you ok to fly prior to that?

[It is what it is]

Sorry to hear about the complications.  Wishing you healing and a safe journey home.

Karen
 

[kmr1969]

Leak was fixed with a re-stitch and then another 48 hours wrapped up in the incredibly uncomfortable head bandages.  One of the House Fellows came into the office on Friday am just for me, removed the wrap, declared no further leaking, and we got cleared for redeye flight home.

As advertised, the Drs at House were all excellent.  Not only competent but compassionate as well.

My tumor was a little bigger than the 2.7 cm we has been quoted.  Not sure exactly how big, but the docs mentioned to my wife after surgery that it was a little bigger than they thought.  The surgery took 8 hours total.

Happy with recovery so far, although I am experiencing all of the common complaints (fatigue, dry eye, full headed feeling) plus a lot of numbness on the tumor side of my face.

Trying to take it easy.  Got back home to MD yesterday and slept in my own bed last night for the first time in 2 weeks.  Heaven!

You can't go wrong to at least talk to the people at House.

Ken

[CHD63]

Ken .....

Somehow I totally missed this thread of yours .....   So glad you had a good experience and result at House.  They are the best (IMO)!  Reading all of your posts just now brought back many pleasant memories of our (my husband's and mine) experience at the clinic, St. Vincent's, and Seton Hall.  The lovely garden was such a wonderful place to take my daily walks.

My surgery was 18 months ago out there (I live in the eastern part of the country, as well) and I have had an uneventful recovery and am so glad I made the effort to go out there!

Thoughts and prayers ..... now!   

Clarice

[millie]

Ken...Glad to read you are finally cleared for home.   I felt the same as you with those bandages...the first days are so difficult, and one cannot be comfortable.  I kept rolling  hand towels and gingerly putting them under the back of  my neck...and your numbness, dry eye  and fullheadedfeeling are all familiar too.   I was told I might drive in two weeks but I can see, for me at least, I won't think about that yet...you are right when you say it is more or an eight week recovery (I think you wrote that- or maybe you wrote at least six weeks)...one thing I notice is I nap during the day and sleep more at night.  I guess that is the body healing. Could barely sleep in the hospital(in Oct 17th, out the 21st    NYU  trans lab) 
Praying for us.
Mil

[kmr1969]

First day at home alone today as my wife was back at work and boys were at school.  My dog was supposed to be watching me, but unbelievably she napped even more than I did.

Was able to walk outside in the yard a couple of times, probably 3/4 of a miles in total, and felt pretty good getting some fresh, cool, air.

Getting to the end of all the pills we got from the pharmacy.  Hopefully, all of these pills are doing the trick.

Had to come home with a few stitches due to my minor CSF leak.  Will work with Dr. Brackmann and my primary care doctor to get those out next week.

I just wish I would get the feeling back in the right side of my face.  I'm making a mess at the kitchen table with food always stuck to me lips/face.

Good healing to all.

Ken

[It is what it is]

It's great to receive your updates.  I'll hope and pray the feeling begins to return soon. 

Karen

[mindyandy]

Hi Ken. Glad to hear all went well. It takes time but you will feel your face again. Probably not 100% like before but it does get better. Take things easy.
Mindy