An Experience With Cyber-Knife Treatment for Cervical Schwannoma

Hi everyone!  Today I'm happy to present the story of lady who is a friend of our page - her name is Rae.  Rae has undergone Cyber-Knife treatment for her Schwannoma, and she was kind enough to jot down her notes as the treatments progressed.  Since Cyber-Knife is a kind of treatment that people commonly ask about, we thought it may be useful to share Rae's thoughts in the form of a blog.  Cyber-Knife is a kind of targeted radiotherapy.  It is used to try to shrink tumors, and it is also used to prevent the further growth of partially removed tumors.  We encourage you to consult with you neurologist or neurosurgeon about any possible treatment with Cyber Knife - and we hope you find this firsthand experience helpful.  Thanks! - Neil

Click here for a description of Cyber-Knife:

http://med.stanford.edu/neurosurgery/patient_care/radiosurgery_cyberknife.html
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(Rae has a Schwannoma at C6 - C7 )

Prior to the first treatment, they made the mask which was a little frightening. It felt like a warm wet pillow held tightly on my face. that was left in place as they did a CT scan. This is what they use to put in the cyber knife machine to pin point the radiation beams on the tumor.

Treatment number one started with them giving me a 0.5 mg dose of Ativan when I arrived at the cancer center. I eventually got another 0.5 mg dose prior to being placed on the table. They strapped my arms and legs down and then placed the mask on my face. It was OK until they anchored it down. That was horrible. Long story kinda short..lol...the Ativan did nothing. They gave me Benadryl which was also not affective. I could not tolerate the mask over my face so they cut out the area of my eyes and nose. this made it much better.

After about 10 minutes into the treatmemnt the back of my head was burning. Once they start the treatment they cannot touch you or reposition in any way. Treatment number 2 was better as far as the pain goes...but not much. That brings me to treatment number 3.

Prior to my treatment I had a lot of back, neck, and arm pain and I took one dose of 10/325 hydrocodone. Then took the valium 30 minutes to the treatment. I still had pain in the back of my neck and head but it was bearable.

The treatments of 4 - 6 were not much different then the previous 3. Still very painful however I did take one norco 5/325 tablet on treatment 5 and two tablets on treatment 6. Treatment 6 was tolerable. Now, I am just waiting for the 3 months to re scan to see if the tumor is shrinking. Today the pain, tingling, and numbness in my arm seems to have increased. I was warned of this so I am trying to stay positive.

The doctor has said that they will do scans in 3 month intervals. The doctor at the cancer center has told me to not be alarmed if within the first 6 mo or so we see the tumor growing and my symptoms increasing ( that is really discouraging) but after that we should see the tumor shrink. They are hoping it will shrink and symptoms are relieved or it is possible the tumor will shrink but I still have symptoms. If that is the case I may then have surgery which will be less invasive.

Since i have finished my cyberknife treatments I continue to have pain and numbness. Some days are worse then others. I dont have a follow up MRI until May as the doctors say that in the first 3 months they generally see growth in the tumor.

Update from Rae, 6 months after

Hello...just thought I would give you an update. It has been 6 months post cyberknife. I had another MRI on the 31st. The tumor has not changed. Remains the same size. My neuro surgeon says that we will MRI again in 6 months. It may take a full year to see change. I continue to have pain and numbness.

A New Q and A with Dr Christopher Moertel, Pediatric Neuro-oncologist at University of Minnesota Masonic Children's Hospital

Hello everyone!  Today I'm pleased to offer you a new discussion in our physician Q and A series - this one a five question Q and A with Dr Christopher Moertel, from University of Minnesota Masonic Children's Hospital.  A group member recommended Dr Moertel as he was a specialist in the medical management in conditions, including treatment for Schwannomas and Schwannomatosis.  He kindly agreed to come on board and do a Q and A with us, to answer a set of questions that I had had tabled for quite some time - some nagging issues and matters that needed more attention and physician insight.  We thank Dr Moertel for taking his time to assist us, and we hope you find this discussion useful! - Neil
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http://www.uofmchildrenshospital.org/Providers/Bio/D_121128

1)  Many patients with Schwannomatosis are very interested to know, is progress being made in the treatment and understanding of Schwannomatosis?  If you are aware of particular strategies, medications, or practices that are increasing the quality of life for those with Schwannomatosis, I'm sure our group members with the condition would be very interested to know.

There is significant research underway regarding schwannomatosis and Neurofibromatosis, type 2. The Children’s Tumor Foundation (http://www.ctf.org/Research/Synodos.html) has initiated an NF2 “Synodos” group that is focusing on effective treatment . According to CTF, “This group of talented researchers come from varying backgrounds – from basic science, to translational science, to clinicians – and have joined together to break down barriers, proactively leverage collaboration and shared knowledge, and work together to develop effective new treatments that will end NF2.”

In addition, there is a great deal of cross-fertilization among researchers studying the schwann cell disorders, including NF1, NF2 and schwannomatosis. We have elucidated some of the genes responsible for schwannomatosis. This is the start of a process that will eventually lead to the discovery of drugs that will effectively target these genes or their products. This era of “targeted therapies” is a very exciting time in medicine – people and families with schwannomatosis and related conditions should be very excited about what’s coming down the road. It is also an important time for effective advocacy – letting your legislators know about how important this research is to you, telling your human stories, will preserve or increase funding for important research regarding schwannomatosis.

2)  A group member with Schwannomatosis remarked recently that she had symptoms such as left side headaches, facial pain, and sensations like being stabbed with a knife above the eyebrows and on the neck.  These symptoms predominated on the left side, and to her surprise doctors found a Schwannoma at C1, C2 on the right side.  The tumor was removed and, surprisingly, her pain and symptoms were gone.  In your medical experience, is it common for referred pain or nerve symptoms to be present this way?  Her own surgeon found this quite unusual...

It is an interesting phenomenon that we see in NF2 and schwannomatosis.  As a result of nerve damage from schwannomas, some signals, such as pain, will be re-routed. We even have one young lady who sweats around her ear every time she eats starchy food! This phenomenon, known as Frey’s Syndrome is a result of the nerves stimulating salivation being rerouted to the skin around her ear.

3)  I think many people in our group would be interested to know, how common is it that you find that people need medication after having had even just a single schwannoma, even when the tumor was successfully removed?  For many of us, the pain, pressure, and post op nerve symptoms can be quite significant - and for some this persists almost indefinitely.  People express dismay at still needing pain relief.  Do you find that this situation is relatively common or uncommon?

This situation is extremely common. If a schwannoma is removed because of pain, the pain may frequently persist for months after surgery. We also know that schwannomas may grow at points of nerve injury because of the basic genetic defect in schwann cell growth. Attention to means of preventing tumor growth after nerve injury and effective treatment of post-operative pain is an intense area of research.  Surgeons dealing with patients with schwannomatosis should be extremely knowledgeable about the condition – an uncomfortable surgeon makes for an uncomfortable patient. Likewise, both patient and surgeon should have reasonable expectations for surgical outcomes. Don’t be shy about asking for second opinions – it’s your body and your life.

4)  We would be very interested to know if many of your patients have had radio surgical treatments such as Cyber Knife - and if you find that it is proving successful in the cases you have seen?

I generally discourage radiotherapy for my patients unless it is a last resort. Radiation can cause cancer and can complicate schwannomas – especially in young people (under 60).  Cyber Knife is another word for gamma knife – both are “brand name” forms of stereotactic radiotherapy. Tomotherapy, CMRT and proton beam therapy are other focused forms of radiotherapy.

5)  As you might expect, we have had group members who have suffered extreme facial paralysis as a result of surgeries for schwannomas - commonly experienced after acoustic neuroma surgery.  Do you find that there are particular strategies for regaining and strengthening facial abilities for people who exhibit these symptoms?  What are the medical management strategies that work best for those who have these kinds of facial paralysis?

Once facial paralysis occurs, it rarely recovers fully. Some patients get their facial nerve (the culprit) stretched during surgery and the post-operative facial paresis usually recovers fully. However, if the nerve is cut or sacrificed during surgery, recovery will not happen. The surgical statistics are pretty clear for patients undergoing surgery for vestibular/acoustic schwannoma regarding those who are at higher risk for facial nerve injury based on tumor size and pre-operative nerve function. The surgeon doing the procedure should be experienced and should be able to give you his personal statistics so that you can judge what risk you are exposing yourself to. I make sure my patients go to teams of neurotologists and neurosurgeons who are used to working together and have lots of experience. I am blessed to have great teams at my institution who provide patients with very clear evidence of outcomes. We also have a clear definition of who would benefit most from medical therapy, such as bevacizumab (Avastin) – and can offer other hearing preservation technologies such as cochlear implants or brain stem implants.

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Disclaimer: Dr. Moertel and University of Minnesota Masonic Children's Hospital  assume no liability whatsoever for the comments or advice offered in the content of this blog.  Dr. Moertel has offered his advice generally on the issues relating to treatment of Schwannomas - however Dr Moertel and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.