Hanging in there with brain issues

[StephN]

Hi Everyone -
Had my scheduled brain MRI yesterday and then went to see my gamma knife rad onc who follows my changes after the gamma knife 20 months ago. Hubby went with me.

The news was basically good, but is only a preliminary reading as the doc visit was only a little over an hour after the MRI. Hubby got to see how the resident does the thorough neuro checks and physical to look for any symptoms or signs of lowered coordination, etc. With me they never see anything wrong, just smile and say "this probably means the little enhancing area previously gamma knifed is radiation necrosis, but we will keep watching it."

The main problem is the return of the cerebral/spinal fluid to the surgery cavity at the back of my head. I had a second opinion last Monday and ran what that doc proposed by my rad onc, who agrees that this could be a good way to go but cautions about surgeries in general. This coming Wed. I will consult with the brain specialist who did the surgery last Feb that has resulted in this CSF leak. I just don't want to know how bad this fluid buildup can get as it is bothering my neck again already. The fluid pocket is outside the brain area and just under my scalp. The sugery would not entail penetrating the brain covering.

Could not do the surgery before the 16th of Sept. as have too many committments and some travel planned. So plenty of time to think about it and see if this will somehow stabilize.

Anyone's thoughts on this are most welcome. Even my med onc said this fluid problem was the first he had known in his long years of treating patients. They did not have the same surgery, but whole brain radiation or other area. The second opinion doc does about one of these type of repairs a month, so has plenty of experience.

[RhondaH]

but, will send hugs and prayers your way. Take care and God bless.

Rhonda

[Joy]

Steph, I'm sorry this dumb thing doesn't just go entirely away! All of us know that YOU will get through this. I'm sure you feel discouraged. I'm sending you vibes of "csf self-resolution"!

[tousled1]

Steph,

Hopefully the final report will be good news. I have no thoughts or suggestions for you only good wishes.

[StephN]

I know what I have going on is very unusual and I don't find much on it while researching. So, I am forced to rely on my surgeons and professional opinions. I know that "forced" should not be how I feel, but I am having to sift through various opinions. This takes thought time, emotional energy and is not easy.

One doc says if I want the surgery to address the spinal fluid leak, I should wait until my next set of CT scans and tests to be sure nothing is happening below my ears. These are in early Oct. I am not worried about that.

My surgeon will be away the first week of Oct. and could do the repair either before or after that time. I guess it will come down to the rate of fluid increase and how much it is bothering me.

He suggests a surgical repair with the lumbar drain, which would require about 5 days in the hospital. I don't look forward to the loss of sleep, as they have to come in and check the drain every hour day and night.

Appreciate the prayers and positive energy.

[pattyz]

Steph,
I sure wish I had some good information for you and not just: wishing you well and a good outcome. That falls so short when you need experience and support in what you're facing...

I don't know if you've ever seen this forum:
http://forums.prospero.com/IRSA/messages

It is a brain cancer/brain tumor site focused on GammaKnife treatments. However, there is a folder for 'mets' that I contribute to. Low activity on the boards, but PERHAPS someone has had a similar experience to what you're going through. There is a 'General' folder as well.....

Maybe there are other sites, too, that have some more input for you. I wish I knew......

Know that you're thought about with great affection and hope for better days ahead,
xoxoxpatty

[StephN]

I have run across that site while searching on the subject of radiation necrosis earlier this year. There was not a lot - mostly scattered mentions and some posts with questions and not many answers.

Seems like it is a more active site now than several months ago.
Might not hurt to pose a question there.

[pattyz]

Steph,

ok. ......but you're right, I don't think it would hurt to ask for input.

What about a question posted at the bcmets.org site? It has a very large member base. A gal named 'Toya' is helpful with radiation and pathology stuff.

xoxox

[Lolly]

Steph,

Just want you to know I'm thinking about you both as you navigate this new territory. I know you're "in good hands" up there, but the uncertainty isn't easy. Although my rads to the right axila area for my recurrent problem is nowhere near as serious as what you're facing, I've also not been able to find any citations or references. My onc did tell me that it's "thinking outside the box", so I have just had to trust the experts on this one.
Keep us posted (wait a minute, I'm talking to Steph here :) )

[heblaj01]

Steph,

Maybe you can get answers to your questions from these specialized sites for brain cancer:

Q/A's to neuro oncs:
http://www.oncolink.com/experts/ask_the_experts.cfm?c=22

Message board:
http://www.cancercompass.com/message-board/cancers/brain-cancer/1,2,119,5.htm

I am not familiar with either one of these sites but I assume the first one should provide the best medical info while the in the second one might find someone with similar conditions to yours.

[mamacze]

Dear Steph,
This is an unsettling time for you. Problems are easier to deal with when you can research how others have dealt with the same; but in this case, you are unusual and you have to just rely on your doc. You have done your research ; you know the logic behind what they recommend, I think if you follow your "gut" you can''t go wrong. Keep us posted on what you end up doing.
Love Kim from CT

[Bev]

Hi, Just prayers that you find a path to a solution. BB

[Sandy H]

Steph I am not much help here but I can tell you I know you will do just fine. You know how to attack and you will make the right decision. Perhaps, an angel will come your way and you will have your answer! It has happened to me! Wishing you well and I know you will keep us posted. I can at least send you a big hug! Sandy

[Mary Jo]

Nothing to share but wanted to send a HUGE cyber hug your way.

God's Peace I pray - Mary Jo

[Sheila]

Steph
You have been through so much and come so far....when I read yor post I could only think how much more do you have to go through...sending prayers and hugs that this will be resolved quickly and you can remain problem free for a long long time.....keep the fight going, you have overcome so much already!

[Kim in CA]

Dear Steph,

I am really sorry to hear this problem won't go away on it's own. Like all of us, that have already been through too many surgeries, I can't even imagine having to contemplate another. Just wanted to say hang in there and know I'm sending you my best.

Love, Kim

[Esther]

Steph, sorry to hear about your new challenge, but as usual you're gathering all your information to make the best choice for you.

Let me know how things turn out for you. I'm sure everything will work out for you.