Worse Case Scenario

[janos]

Hi,
I'm new to the forum, and have many questions. One question i have for experienced sufferers relates to the worse case scenario i have been given. In my worse case, i've been told i could be paralysed from L1 down.
But I got to thinking about this and wondered is that really worse case? Do the MRIs and treatments stop once paralysis has set in, and there is loss of bladder, bowel and sexual function?
Could the tumor start working its way up the spine and cause more damage over time.
I'm not trying to be a complete pessimist here, but it is important for me to understand the scope (inasmuch as is possible) of this threat. I am a realist, and i will live with any outcome that i am faced with. And will do everything i can for a positive outcome.

Tnks,
Jan

[valerieb]

Hi Jan

I am sorry you are having to learn so much about this disease; one thing you have probably definitely noticed by now is that every case is quite different from the last.

As for worst case scenario, well not to be glib but worst case is death due to surgical complications. So baring that, worst case depends alot on your "mindset" going into and coming out of treatment. Depending on the tumor there is possibility of regrowth however assuming it is a non-malignant tumor any potential regrowth would be slow growing and would most hopefully be discovered before it amounted to a significant growth.

One aside - my use of non-malignant - at the conference we learned that CBTRUS and the histology of these tumors is not really considered benign but is considered non-malignant. What I took from that is the medical profession is acknowledging that although non-malignant they are certainly not benign since even the smallest of tumors has the possibility to cause irrevocable damage to the CNS. Okay....

Yes there is always a possibility of paralysis, both with surgery and with delaying of surgery to the point that permanent neuro damage is done. Any responsible NS is going to tell you all of the possible risks BUT a truly fine and responsible NS is going to take many many actions to prevent these complications within the surgical arena. Actions would include use of intraoperative monitoring including sensory evoked and motor evoked potentials, possibly moderate hypothermia, steroids to reduce the swelling of the area when "aggravated" by a surgery, etc etc. Hopefully whoever you choose to do a surgery will have quite a bit of experience and a tremendous team.

After the surgery there will be much dependent upon your determination, desire and a bit of luck. It is a long process with lots of learning, lots of frustration, excitement and victories and tears.

I would say that given your realistic attitude and desire to know all the possibilities and take proactive steps, you will do pretty well. Ultimately it comes down to an acceptance at some point that you are a different person than you were before the tumor but that new person can be altogether more wonderful, fabulous and strong than you ever expected to be.

Keep us updated
Valerie

[bethann]

Jan,

I also had a hemangioblastoma. I was told that if I did not have it removed totally it could bleed out and cause paralysis or death. Because if it bled in the spinal cord it would be hard to control. It would bleed to fast to be able to get to it once it starts. That is why they went back in as soon as they did with me to remove the remainder of the tumor I had.

Beth

[msweeney]

Jan:

I am so sorry that you are having to deal with all of this. I am very unfamiliar with hemangioblastomas. My sense is that they are rare as I have not read much about them here on this forum. I looked up the old forum and found these posts (see below). Clip these and paste them in your address bar and see if they take you to the link. Maybe you can try to e-mail some of the folks as well. I think most of us can help you with questions about the fallout of surgery but with the specific tumor type you have there may be things specific to that tumor that would be different.

Spinal Cord tumors as a whole are very rare. Add to that your tumor type which is rare. Perhaps your doctor is being vague because he does not have a good deal of experience with your tumor or spinal cord tumors in general. Also have you heard of Dr. Jallo? He is at Johns Hopkins and is an expert on spinal cord tumors. Many people (myself included) on this forum have sent their films to him for a second opinion. You may be well served to seek out his or another opinion.

I wish I could be of more help. I am hoping some folks with your tumor type will see your post and give you more specific information. Again, I am sorry you have to deal with this and wish you the very best.

Matt

forum1.aimoo.com/Spinal_Cord_Tumor_Support_Forum/Welcome-to-the-Main-Forum/Tracy-2001-and-anyone-out-ther-1-681449.html

forum1.aimoo.com/Spinal_Cord_Tumor_Support_Forum/Welcome-to-the-Main-Forum/Hemangioblastoma-1-707037.html

forum1.aimoo.com/Spinal_Cord_Tumor_Support_Forum/Welcome-to-the-Main-Forum/hemangioblastoma-1-160151.html

forum1.aimoo.com/Spinal_Cord_Tumor_Support_Forum/Welcome-to-the-Main-Forum/Hemangioblastoma-angiograms-1-9691.html

[qhcrazy]

"I would say that given your realistic attitude and desire to know all the possibilities and take proactive steps, you will do pretty well. Ultimately it comes down to an acceptance at some point that you are a different person than you were before the tumor but that new person can be altogether more wonderful, fabulous and strong than you ever expected to be."

I couldn't have said this any better!!!! Valerie has definite words of wisdom for us all. Hang in there, and do keep us posted. We are all here for you and will pray for you daily. I know I will.