ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: highlife on January 28, 2009, 08:03:47 pm
-
Well, I've decided to leave all you lovely "watch and wait" folks. Although I was very happy to w&w when I was first diagnosed last fall, I find I'm not a very good w&w person. In addition, I was thrown off my horse at least in part because of my poor balance, ending up with a CT head scan. I lost my balance again and crashed into the corner of my bedroom in the middle of the night. I decided that surgery after care can't be too much worse than that. I have scheduled surgery on March 4 with Dr. Shahinian at Skull Base Institute in LA. I feel really good about my choice, and feel strongly that I've researched this well and that I won't second guess myself.
I so appreciate all of you.
Steph
-
Congratulations on coming to your own decision about your doctor. It's very important that you're comfortable with your choice and that it is YOUR choice not because someone pushed you in that direction. Keep everyone posted as the day approaches. Do you know if you'll be having a middle fossa, retrosigmoid or translab surgery? It doesn't really matter, but I was curious..
Regards,
Brian
-
Sounds like you are ready to have your date on the ANA Calendar. Do you want to do it, or shall I do the honors? :)
Steve
-
Brian
Dr. Shahinian does endoscopic surgery, the entrance being at the same place as the retrosig, but a dime sized hole.
Info on-line at www.skullbaseinstitute.com.
Hey, Steve, go ahead and do the honors!
Nice to hear from you guys.
-
PS
Steve, so you really knit hats?
Steph
-
See for yourself, in this topic posted yesterday: http://anausa.org/forum/index.php?topic=8598.0
Steve ;)
-
Congratulations on making your treatment decision and scheduling your surgery.
Good luck!
Jan
-
Brian
Dr. Shahinian does endoscopic surgery, the entrance being at the same place as the retrosig, but a dime sized hole.
Info on-line at www.skullbaseinstitute.com.
Hey, Steve, go ahead and do the honors!
Nice to hear from you guys.
Ahh, well, good luck with the surgery. I wish you a speedy and complete recovery. I suppose how they get there is of less importance than what they do when they get there. I pray they get all of the tumor and you have a rapid recovery.
Regards,
Brian
-
Steph,
Congratulations on making your decision -- its the hardest part of the AN journey in my opinion. Jerseygir also had surgery at SBI and I believe with your doc and was very happy with her outcome. I'm sure you'll be in good hands.
Best wishes,
Wendy
-
Hi Steph,
I completely understand your decision, wait and watch is not easy if the AN is giving symptoms which affect your quality of life and can leave us feeling a bit in 'limboland'!
I must admit I am more than a little envious that you have the opportunity ofmaking use of Dr. Shahinian's expertise - if only I were iin the USA I would be doing the same - endoscopic is my intuitive and research based choice but unfortunately our private insurance wouldn't cover having the op outside the UK (well it was worth asking!) and personal funds just won't stretch....
Must be a very calming feeling to have things in place, wishing you all the very best.
x
-
Steph:
Congratulations on your endoscopic surgery decision. I wish you total success and a trouble-free recovery. :)
Jim
-
Steph,
I wish you the best of luck during surgery and smooth recovery! We hope you post about your outcome and recovery. I am sure many people would like to know.
The wait is probably the worst for you but remember that you have a small tumor, no previous resections and have the greatest chance of the best possible outcome! One more time: good luck!
Eve
-
Wow. Thanks all of you. I really appreciate your support, can't tell you how much.
Eve: You went the SBI route, too? Tell me about it.
The insurance thing is sure tricky. On the face of it, it looks like my insurance will cover. But that isn't a done deal yet. I will croak if insurance co comes back saying they'll pay everything except the last $60,000!
Steph
-
Hi, Steph,
The insurance is something you have to keep up with. Unfortunately, it is far from straightforward. Expect a refusal the first time but they will pay eventually.
My second AN surgery was at SBI and probably the best thing about the entire experience for me was short hospital stay, no bandaged head ("bonnet", as some people here call it) and washing my hair right after the hospital. I never really had an icky head this time around. I almost feel guilty when somebody here does. The facial nerve was saved, my MRI is clean; I have nothing to complain about. In fact, at 2 weeks post-op, I was sitting at my my PCP's office (she agreed to take out my staples) and my PCP asked if I already had the surgery. She had no idea that I had one! It was not obvious from looking at me. I also had no pain whatsoever but pain is an entirely subjective experience. It maybe because the metal was drilled, not my muscle and bone, and that does not hurt. In any case, a smaller scar (only 8-9 staples) means less chance to create those monstrous headaches, so you have an advantage there as well.
I also have to add that I had my first surgery 20 years ago and have to live with things that they did back then for the rest of my life. That includes the original scar that goes from the top of my head all the way down, and including, half of my neck. To this day I cannot press weights, otherwise I get a royal headache. The methods they used 20 years ago are truly barbaric by today's standards. People who had surgery in modern times just do not understand. I had lunch with some NY/NJ ANers and noticed that I grossed some people out when I talked about my experience. It is good that medicine moves forward and most people don't go through the pain and suffering anymore that I once did.
Best wishes and smooth recovery. Take that warning not to lift anything but the telephone very seriously! You really should not even if you feel like it. Good luck!
Eve
-
Take that warning not to lift anything but the telephone very seriously! You really should not even if you feel like it. Good luck!
Eve
Steph:
Don't even bend over to pick up anything--that alone could give me headaches that make me cry. Best of luck to you. We'll be watching the calendar.
Syl
-
Hi Steph,
Congratulations and best of luck with your surgery on March 4th!!! You will be in our thoughts and prayers throughout your AN journey. Hopefully your surgery and recuperation will go as well as what our son experienced with Skull Base Institute. We know that the care you receive from Dr. Shahinian will be fantastic.
It was deeply satisifying to visit with you about our experince with Dr. S and the Skull Base Institute. To update you a little bit about Jared's current condition - we spoke with him on Wednesday evening and he informed us that he is now driving and suffers no dizziness. He also played in two intramural basketball games on Wednesday and said he is probably at 85% speed right now. Just a week or so ago when he tried to play competitive basketball he would become dizzy when he tried to push it too much. Jared says he is so much better than just 7-10 ago and is looking forward to complete recovery.
Please keep us informed of your surgery and if you have any more questions don't hesitate to call us anytime.
Take care.
Ron & Karen
-
Ron and Karen
I am so excited for Jared. Tell him how much I appreciate hearing his good news. I would like to be back to taking dressage lessons on my Spanish mares this spring/summer and Jared's story gives me lots of home that I may get past the dizziness and balance issues, too.
Did you see that Boomer in the wait and watch group is having surgery on Feb 4 at SBI?
Steph