Novalis Shaped Beam Radiation

I have a tumor growing in my Sacral Canal (very bottom of the spine), it is till very small but there is very little room in the Sacral area for any expansion.

Because of scar tissue from previous surgeries in that area (I have had two previous surgeries to remove a total of 8 tumors), My Neurosergeon feels conventional surgery may not be an option anymore. He has refered me to another Dr in the same hospital (Lahey Clinic, Burlington, MA) who I have an appointment to see this thursday 3/26/09.

This appointment is to discuss/ask questions about the Novalis Shaped Beam procedure they would like to perform. Lahey has had this machine for about a year now and have had good results.
While it does sound promising, there are still concerns. I have had two previous brain surgeries utilizing their older machine with SRS and have had good success so I am familiar with the possible side affects of SRS.
I am wondering if anyone has any experience with this procedure in the spine.

By Ministertammy
Posted March 22, 2009 at 11:47 pm
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My husband had cyberknife radiation on two tumors in his spine. One was in the area of the sacrum. He got relief from the pain that he had in the area of his tailbone so we believe there was some shrinkage. But, unfortunately, the radiation didn't seem to stop the tumor from growing again.

By joyceg98
Posted March 24, 2009 at 12:10 am
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If you are considering stereotactic radiosurgery (SRS) ...
with ANY of the various machines
on BRAIN or SPINAL CORD...
PLEASE be sure to read http://vhl.org/stereo and go through our list of Questions to Ask your Doctor with your doctor.

DO NOT SKIP THIS STEP.

Most doctors are VERY wary of using SRS in the spinal cord because there is so very little space there. The groups whose opinions I trust the most are University of Pittsburgh and Lonser at NIH. U Pitt has the most experience with SRS and VHL of any group in the US. We have invited them to speak at the Annual Meeting in Anaheim this year, to talk about the benefits AND THE LIMITATIONS of SRS.

Every technology has its "sweet spot" -- the conditions under which it is most successful -- and its limitations. It is important to understand both, and to respect (and not push) those limits.

I know it's tempting -- sounds much easier than open surgery. But if the conditions are wrong, the effects of SRS gone wrong can in fact be worse than open surgery.

There is no easy way to describe what will be successful and what will not. The Questions were assembled with a great deal of input from a large group of physicians worldwide, to help raise the issues that are critical to successful SRS.

We will be posting the agenda for the Anaheim meeting soon, and hope that you will be able to join us. Meanwhile, you can always seek a review of your scans and proposed treatment plan from the folks at University of Pittsburgh or from NIH or from Barrow Neurological Institute in Phoenix.

All best wishes,
Joyce

By Rick
Posted March 25, 2009 at 5:25 pm
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Thank You Ministertammy and Joyce for your replies. Ministertammy, how is your husband doing now? How long ago was the SRS? The tumor started growing again? has he had conventional surgery to remove the tumor?
Joyce, thank you for the advice, as always, your a wealth of information. I will be asking many questions tomorrow and I too am VERY wary of SRS on my spine, eseccially in the Sacral Canal where there is even less space than other parts of the spine. I will keep you all posted.
Rick

By Rick
Posted March 25, 2009 at 7:29 pm
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Joyce,
who do I contact at the Univercity of Pittsburg to seek a second opinion on my treatment plan? I do have reservations about delaying things in any way because of the tumor growing every day but I don't want to make the wrong decision either.
Thank You
Rick

By Ministertammy
Posted March 28, 2009 at 8:59 am
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Larry had brain surgery in 1997 -- the surgeon left a tiny piece of the tumor in the brainstem thinking it was a slow growing tumor and we wouldn't have to worry about it until he was an "old man." In 2000 that piece of tumor grew and so he had SRS on it. For the next few years the tumor was shrinking. He had no side effects and we thought we had beat it. In 2005 his routine scans showed a NEW tumor also near the brainstem. Another surgery -- this time unsuccessful as far as removing the tumor. So after recovery from the surgery he had SRS on the new tumor. That's abut the same time that we discovered the tumors in his spine. Unwilling to have another surgery we opted for SRS on the tumors in C5 and in the sacrum. He was having incredible pain in his tailbone. Even after brain surgery his tailbone hurt more than his head. We finally had a doc order an MRI of the entire spine. . . lo and behold there are lots of little spots. Anyway, again, he got relief from the pain after the radiation so we thought all was well. In November 2007 we learned that ALL the tumors had grown. For the past year we have been seeing docs trying to find a way to stop the growth of the tumors. He is 47 years old and has nausea everyday. He has been on morphine ever since his last brain surgery. We are currently at the hospital because he has been dehydrated. We thought that SRS was a miracle -- but it obviously didn't give us the longterm results we had hoped for.

By Rick
Posted March 29, 2009 at 7:45 pm
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Ministertammy,
Larry has been going through alot lately, I pray he has the strength to get through it all. I am 49 years old, my first brain surgery was in 1980, since then I have had 5 brain surgeries (2 SRS), 4 spine surgeries, adrenal gland, kidney, and eye surgeries for a total of 22 tumors either resected or stopped from growing more by SRS.

Until 1997, I always bounced right back from these surguries and was usually back to work in 2-3 weeks. That changed in 1997 when I had my brainstem surgery which left me with ataxia on my right arm (I was right-handed), it's really not that bad except for my fine motor skills are gone. 2 days after I was home recovering, I ended up at another hospital because the oral steroids I was to take at home irritated what the first hospital described as "the largest ulcer we've ever seen ". The over the counter ulcer medication I was sent home with was not strong enough. When a scope was put in my stomach to take a look at it, they tried to close the artery that fed my ulcer. Well, it only made matters worse, started filling my stomach with blood, ended up having emergencey surgery to close the ulcer. 21 days later, 20 units of blood, 2 setbacks with 5 days each in intensive care, I finally came home. My neurosergeon felt I was too weak to undergo surgery to remove the 3 tumors we knew about in my sacral canal

Finally had surgery in the fall of 07, he ended up taking out 7 tumors. My legs meanwhile, over the summer, suffered nerve damage, they are now up to about 60-65% strength. I also developed severe nerve pain from the scar tissue that developed post surgery. Many different medications were tried but nothing really worked 100% and they made it difficult to concentrate.

One year later, I had surgery to remove 4 tumors in the L-4,5 area, that left my bladder non-functional. My nureosergeon was, however, able to relieve the tension on some of my scar tissue, and my nerve pain is gone.
I am fortunate that I still mainain a fulltime job but lately, I worry about how long that can continue to happen. This new tumor is at the very bottom of my sacral canal where the only nerve left is the one that controls the bladder and bowels.

Sounds like the surgeon that performed Larry's brain stem surgery is not familiar with VHL. Hemangiomas are notorious for slow growth then for no reason, very rapid growth. I urge you to find a specialist familiar with VHL, if you haven't already.

My thoughts are with you and Larry, I have experience going through the issues as a patient but I have seen what my own Wife has been going through with all of this. Stay strong.

Rick

By Ministertammy
Posted April 8, 2009 at 10:45 am
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Wow, Rick, your story makes Larry's health issues sound minor. You are right about the importance of finding docs familiar with VHL and hemangioblastomas. We truly didn't know any better and trusted the neurosurgeon. One thing I am grateful for is that the neurosurgeon did not cause any severe side effects. And when the tumors showed growth again he knew this was out of his league and sent us to others with more experience. We now go to Mayo Clinic in Rochester for scans and consultation every 3 months. At least there the docs have other patients with VHL. . . which wasn't the case closer to home. While Larry has lots of fatigue and nausea he can still walk, talk, eat and shower. He's really tired of "feeling sick".

By Rick
Posted April 18, 2009 at 10:24 am
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Well, I had the Shaped Beam
Radiosurgery, last treatment was last Tuesday. Now we wait and hope for the best. :-)

Joyce, I heard back from Dr. Gerszten @ U. of Pitt. before my treatment started. After reveiwing my scans and a short description of the planned treatment including dose amounts per treatment. The message from him was he felt I was getting "absolutely the appropriate treatment for the tumor". After talking at length with Dr. Peter Dempsey @ Lahey, my wife and I had decided to go ahead with Shaped Beam anyway but hearing from Dr. Gerszten really made me feel better.

Because of previous resections in my lower Sacral canal, bone had already been removed allowing for needed expansion. The tumor size was about 1mm round so it only took up half of the canal space, again allowing for expansion. The only questions left are 1: if the three remainig nerves in that area received too much radiation damage (because of old scar tissue, the MRI view of those nerves were abscured enough so it couldn't be determined how close they were to the tumor (time will tell), and 2: Eventual regrowth of the tumor.
Joyce, thank you for the recommended second opinion, it really helped ease my mind:-)

Ministertammy, thank you for your support. I hope Larry has been seeing some improvement, things take time but if he han't already, he should be doing some daily light exorcizes at home. Exorcizing is really helpfull long term and it is very important when it comes to recovery from any procedure.
Rick

By Ministertammy
Posted April 19, 2009 at 8:55 am
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Is this radiation the same thing as Proton Beam Radiation? How many times did you go for the radiation? When I was reading about Proton Beam radiation it sounded like it is given for 6 weeks.
I hope that your radiation will be successful in stopping the growth of your tumor and not damage the nerves there.

By Rick
Posted April 21, 2009 at 8:21 pm
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I don't know if Shaped Beam Radiation is similar to Proton Beam Radiation. I am not familiar with Proton Beam, perhaps someone else can answer that question.
My treatment was given in 5 doses over a 7 day period (the weekend interrupted a 5 day treatment).
The treatment was outpatient so now we just wait and hope for the best.
Ministertammy, thank you for your concern.
Rick

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