Schwannoma on L4,L5, S3,S4

[tennis726]

Hello everyone, I really appreciate this forum.
first I guess the history. I play a lot of tennis and I developed problems in my right leg , The pain went to my right side buttocks behind my knee, my calf, down to ankle, ending in my heel. Walking was not a problem running or jogging without a problem going up and down stairs was like a killer. I thought maybe I pulled something while playing tennis. After going to the orthopedic who found nothing with my knees, then checked my hips and back. No problems found. He decided to do an MRI on my back and found a 3 cm tumor on my spine L4, L5, S3, S4. They called it a Schwannoma. I was scheduled for surgery. Two days prior to going into surgery they canceled the surgery. The surgeons had a conference with me as the topic. they seemed to agree I would be a good candidate for cyber knife surgery. I did go for the cyber knife surgery which did exactly what was supposed to. I have a schwannoma tumor that is totally dead. After multiple MRIs it was found to not be moving however not shrinking either. Normally this is a good thing. However the tumors continues to rest on the nerve which causes the problem in my leg. It could take up to two years for this to start shrinking. I have the cyber knife surgery in November 2013.

So I guess I'm in a dilemma. That's why started reading the forums. I honestly don't know if that's a good thing or bad thing. You get so much information which takes a while to process it. I often think that you just find the bad stuff most forms. So I guess I'm asking you guys how do you make the right decision for yourself do I wait another year taking pain pills, steroids, and who knows what else with hopes the Schwannoma will shrink, or get the pressure of my nerve. I have seen a pain doctor which tried drugs , and now suggested a steroid shot in the area of the nerve like the one people get for Sciatica
I am concerned about the length of the recovery process, after surgery should I go into rehab for a week or two?, possibly of a foot drop, or other complications such as spinal fluid leak. I know everybody's different and will heal in their own time, I'm also very concerned about the amount of pain you are in after surgery.

Cutting to the chase. I am out of options, I am scared of the surgery but have to accept reality. Any comments or advise would be appreciated,

Thanks

[markalan]

Hi Tennis-

The term "mass effect" is used to describe a tumor that is large enough to compress the other nerve roots in the vicinity of the tumor. A 3cm schwannoma probably has a considerable mass effect and that's why you are in such pain.

As you point out, the goal of cyberknife is to kill the tumor -- not necessarily to reduce the size of the tumor. You might get lucky, but my understanding is that the tumor may or may not shrink after the treatment. So it's not clear to me why cyberknife was chosen for a large 3cm tumor. The chance of killing the tumor with cyberiknife is something like 90% and it sounds like your tumor is dead. However, Schwannomas grow extremely slowly and I think 10 months is too soon to declare victory.

I'm very interested to know if the cybeknife treatment caused any additional weakness. In some rare cases (maybe 1% or 2%) the radiation itself causes weakness (or myelopathy). It would be *very* helpful to the board if you could tell us if the cyberknife treatment caused any deficits, especially since you are a tennis player. The myelopathy usually shows up in the first 6 months -- so if you are doing okay at 10 months, then you have every reason to be optimistic.

Assuming your tumor is dead, maybe the goal of having an open surgery would be to debulk the tumor, to greatly improve your symptoms. Debulking the tumor would likely be a lot safer that going for a complete resection and your odds of a good result are probably excellent.

If you have open surgery, make absolutely sure you get an experienced surgeon. All surgeons are NOT created equal when it comes to removing spinal tumors. If you PM me, I know at least 3 outstanding surgeons for open surgery and two doctors that are radiosurgery specialists (e.g. cyberknife). Also, this board has many recommendations.

Hang in there, and I hope you are doing well.

[ancakist]

Markalan
your opinion is very detail and helpful. I myself have schwannomas in lower back (L1 to L5). Surgery may needed in the near future. Please send me the name and contact for 3 outstanding surgeions for open surgery and two doctors that are radiosurgery specilists. (My email is : [e-mail])
Thanks ancakist

[Joseph]

Hi I also have been diagnosed with schwannoma in lower . If you can kindly also send me the details of the surgeons it will be greatly appreciated.

email: [e-mail].
Thanks

[South Africa Pieter]

I also had a Schwannoma on L5 discoverd 2012-08-27, had surgery and the tumor was removed. Had nerve damage and a numb leg, foot and lost the function of several muscles in the left calf. I had so much nerve pain and burning in the left foot and a Neuro Stimulator was inserted. For the past few years I suffered pain and the neuro stimulator only helped about 20%. Got back pain again now, and CT scan was done. The tumor has grown again and is 11.6 mm - Neuro Surgeon suggest to totally remove the L5 root nerve. I am very worried about the side effects and effects on bladder and bowel function. The NS confirmed that I will certainly have a drop foot. Not looking forward to this, and will go for a 2 nd opinion. Any advice would be appreciated - mail [e-mail]

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[gwpz]

On my 5th schwannoma which 2 years after radiation finally was declared dead. Pain has only slightly moderated. Anyone have experience with the likely outcome of tumor on terms of it shrinking or being absorbed?