MBritt - You are in our prayers - hope to hear from you soon!
Sandy - Houston TX

MBritt is home and doing fine! Just got a short note from her this afternoon!

Blessings and sunshine for all - Sandy

I wish you all the best..Please take things easy all my love JJ

I'm so glad to hear she is doing okay. I'd been thinking and wondering.

Hi All -
MBritt promised me a call when up to it! It's been a week since I heard from her. We discovered that we live within minutes of each other....and one of my favorite surgeons took care of her. I am so anxious to hear from her! I know that she will so enjoy everyone's 'chatter' in anticipation of hearing from her.

Wishing you all speedy recovery and succesful treatments!
All the best - Sandy

Thank you everyone! I am so touched! I am home recuperating. My back kinda hurts from the lumbar drain. Quick movements make it hurt. I'm due for another MRI in 6 weeks, then radiotherapy. Have a couple of questions - 1. Can anyone share their experience with proton beam? It's supposed to be really gentle as it won't harm optic nerves nor the pituitary gland. 2. How long did it take before you saw physical changes (i.e. lessening of swollen tissue, smaller hands, etc). I think I still look the same and my ring is still tight. ALso my vision seems still blurry. :( THANKS!!!

M. Britt, I hope you have a quick and uneventful recovery and that you have less discomfort from that lumbar drain with each hour that passes.

I did not have proton beam, but I think I would prefer it to gamma knife if I have to have radiation from what I have been told. It is supposed to be in lower doses of radiation so it is supposed to be safer for the optic nerves and therefore more ideal for our pituitary tumors. You're going to M. D. Anderson ?

There was a member who had proton beam radiation treatments 2 summers ago, but she has not been active in our forum since shortly after she had them. I don't remember for sure where she went for hers, but I'm thinking it was in Florida and that she was from South Carolina. I think there are not many centers in the entire world where you can receive those treatments and not long ago there were only 5 in the U.S., but several were under construction. One should be finished in Michigan by fall of next year if they are on schedule from what I read several months ago. There was to be one built in Chicago and another in Pennsylvania and I forget now where the others were, but interested people could research them online.

So Glad your home and surgery is behid you, we saw changes within a few days,because my daughter was very wollen around the face and neck, we couldnt believe how this swelling went down, about a week, my daughter had external beam because it was near the optic chiasm, and also I think this is a gentler therapy.that was 2 years ago, we are still seeing changes, also her tongue was quite swollen and she developed a lisp, this disappeared almost right after surgery, ive heard proton beam is very good. I wish you a speedy return to health.

How are you feeling? How many days were you in the hospital? Is your vision better?
Ulrike

I feel ok except my back still kinda hurts from the lumbar drain. I had a blood test 5 days after surgery and my IGF-1 went down by 100 points. It's 700 now which is still high. My doctor said sometimes it takes months for the GH and IGF-1 to normalize. I guess I wont have any medications until then. I'm due for an MRI though in 5 weeks, then radiation. I think they use Novalis which is supposedly like proton beam. Has anyone heard of this? Thanks guys for checking in on me.

Ulrike,

I was in the hospital for 5 days. I was at the ICU then my doctor sent me straight home. My vision is slightly better. I was told it takes time for the swelling to go down. I am going to see my opthalmologist on Friday. Hope she has good news.

How long does it usually take for the physcal changes and hormone levels to 'normalize' after surgery? Thanks!!

I think the changes are different for all, some are very quick to notice, others take a while, and I suppose it depends on how surgery goes, and of course medications, what the levels have dropped to, IGF-1 has to drop back down, while this is high I suppose changes are strll going on, Am I right?

That's right spiegal. I noticed that my eyes and face are less swollen. I hope this continues. I'll have another MRI in several weeks prior to my radiation therapy.

M- You are asking great questions and your group is just wonderful. Keep your trust in Dr. B and his team - they are the best!
Get lots of hugs and enjoy this touch of beautiful fall we have been blessed with! Sunshine and mild breezes will do wonders for your healing!
All the best - Sandy