Case Study # 27, Brooke and Her Sympathetic Nerve Schwannoma

Hello everyone!  Welcome to Case Study # 27, this one the story of Brooke and her Sympathetic Nerve Schwannoma.  We thank Brooke for kindly offering to share her story, and we hope that this case study is useful to those who are suffering from Sympathetic Nerve Schwannoma.  - Neil 

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1) How old were you at the time of your diagnosis?

I was 27 years old.

 2) Do you have any history of Schwannomas in your family?

My grandfather on my dad’s side had a benign tumor removed from his neck when he was in his 40’s. However, I do not think it was diagnosed as a schwannoma. Other than that, nobody in my family  has had schwannomas.

 3) Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

My schwannoma was located on the left side of my neck, high up in the neck and a few inches away from my jaw joint and ear. Originally I was told that this was a vagal schwannoma, but after surgery discovered the tumor was on the sympathetic nerve chain. I was having symptoms for years, all on the left side of my body. Symptoms included horrible headaches, floaters in my left eye, an off balance/dizzy feeling, muscle tension in my neck and left shoulder, and a TMJ diagnosis.

4)  Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

I had surgery in January 2017 for complete removal of the schwannoma. My surgeon was experienced in the surgery and was able to remove the schwannoma and surrounding lymphnodes while preserving the sympathetic nerve. I would consider this a very successful surgery. The total surgery time was under 2 hours and I stayed for one night in the hospital.

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

I think someone going through the same thing that I did should write down any questions or concerns that they have regarding their schwannoma, including the variety of treatment options that are available. I met with my primary care doctor, two different surgeons, and a CyberKnife radiologist all before making my decision. I was fortunate in that my schwannoma did not need to be removed immediately, so I had a lot of time to think about my decision and ask all of the questions I needed to. Make sure that you understand the surgery before going into it, and also talk with your surgeon about the recovery process. Even though the tumor will be removed, it will take a long time for your body to heal completely after surgery.

6)   Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

The first few days of recovery were more intense than I had imagined. I could not bend my neck and needed help to do everything. Sleeping was very uncomfortable since I could only lay on my back in one position without turning. I had a surgical drain in my neck for a few days, but when that was removed, a lot of pressure was released. I slept a lot the first week of recovery. I also had a case of Horner’s Syndrome (droopiness and sensitivity in my eye), but it was amazing to see how much my eye improved each day. I had ice on my neck and jaw constantly to relieve the swelling.  I was on a liquid diet for about the first week of recovery, since my whole mouth, jaw, and neck would ache with any chewing movement. I was on the pain medication for only about 2 weeks.

The most surprising part of the recovery process that I did not expect happened 3 days after surgery. I woke up and it felt as if I couldn’t swallow or breathe. I went to the ER and they called in a head and neck surgeon to do a thorough examination. They put a camera up through my nose and down into my throat. They determined that the swelling from surgery had just gotten pretty bad, so when I swallowed, it felt like a blockage. My airway was not compromised even though it felt like it. They made sure I could swallow water and gave me stronger pain medicine, and a steroid through my IV that immediately reduced the swelling. The steroid’s effects lasted a few days, but then the feeling returned. I ended up getting prescribed a week’s worth of the steroid and it helped a ton. That was really the only setback in the last 3 months of recovery.

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

Overall, I feel so much better after surgery. The anxiety I had anticipating the surgery had really taken a toll on my well-being. I have been schwannoma free for over 3 months now and feel like I can finally be normal again. I waited about a month and a half before doing intense exercising, and now I am easing back into my usual workouts. I was experiencing dizziness and an off balance feeling for a year and a half leading up to my surgery, and now that is gone. I am feeling great!

You can email Brooke at: more.brooke@gmail.com

Case Study # 26 Lori Carlberg and the Story of Her Jugular Foramen Schwannoma

Hello everyone!  Today I am pleased to present our 26th Case Study, this one the story of our friend Lori Carlberg and her jugular foramen Schwannoma.  This is another kind of rare Schwannoma, and we are so very grateful that Lori took the time to share her story.  She has been through quite a struggle - and she has been kind enough to share her story in the hopes of helping others.  Thanks so much to Lori for sharing her experiences! - Neil 

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1)  How old were you at the time of your diagnosis?

I was 39 when I was diagnosed

2)  Do you have any history of Schwannomas in your family?

 There is no history of schwannomas in my family

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

 My schwannoma is located in my jugular foramen.It affects cranial nerves 9, 10 and 11. I had terrible headaches mostly on the left side of my head. The pain would start in my neck and travel up through my head and would just ache and pound and nothing helped it. I could barely get out of bed, I would constantly vomit and the pain was just too much for me. My husband was in Iraq at the time (he is active duty Army) so my daughters who were 14 and 17 at the time had to take care of me. My oldest took me to the emergency room and long story short, they couldn't find anything wrong so just loaded me up with painkillers. I didn't care at that point. I just wanted to sleep and be pain free. The painkillers basically knocked me out for 18 hours a day. When I was awake the pain was still there. My daughter took me back to the ER the next week. They did CT scans, blood work and still nothing. They told me to see a neurologist. I went the following week to see a neurologist and he immediately sent me for an MRI. That is when they found out it was a schwannoma. 

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

 I have had 3 craniotomies. The first one was Sept of 2009. My schwannoma is dumbbell shaped so part is in my head and the other part is my neck. When the surgeons first went it, they were going to try to get the whole tumor but they only opted to get the top part. After the surgery the surgeons told me in order to get the whole thing, they'd have to cut my facial nerve, cut my auditory nerve (then I'd always be deaf in my ear) and I may possibly need to have a feeding tube because I could have swallowing issues. I actually felt pretty good after that surgery. I had been going for bi-annual MRI's to keep an eye out for regrowth. In 2011 they found it growing back (it grows back like a fluid filled cyst which causes problems as in headaches and head/neck pain) My neurosurgeon said it was time to operate again so he did in the summer of 2011. The following spring the tumor was growing back again in that fluid filled cyst. I then had the cyberknife performed to see if the radiation could finally get rid of it. All seemed well until the summer of 2014. I started getting headaches again and I just wasn't feeling myself. I told my husband that I think the tumor is causing problems again. I ended up in the ER twice in the same week. 5 days later, I had my 3rd craniotomy. It's been a long road. I just had an MRI yesterday to check the growth. I've been having head pain again so I'm not sure what's going on. I would say my surgeries have been successful but in my instance my tumor keeps coming back in cyst form which causes problems with cranial nerves 9-11.

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

 As far as questions go, I feel I asked my dr's quite a few questions and my dr's were very open and honest about what could happen. Because my tumor is in such a rare spot, a lot of different things could go wrong. There are so many nerves that could be affected. I would just tell people to ask any questions whether you think it's a dumb question or not. Make sure the dr's tell you what exactly to expect when you are healing. That's one area where I don't think my dr's were clear about and of course I had no idea what to expect. It's not fun recovering after brain surgery. But I've had 3 now so I know exactly what to expect. On a side note, I have dealt with a couple issues that happened during my surgeries. After my first surgery I started having problems with my shoulder. Come to find out, they think it happened because of the way I was positioned for so long. After my 2nd surgery, my voice started getting very weak. They nicked my vocal cord during surgery and now I have a paralyzed vocal cord. So, there are always other things that you have to be careful about during these risky surgeries.

6) Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

 I have definitely made a positive recovery but I feel like I'm still dealing with it 8 years later. I am a positive person so I try to look for the good in everything. There is a good chance I will be having another surgery but I totally know what to expect now. I'm always in ICU for 5 days after surgery then they let me go home. The first 5 days are NOT fun. I want to get out of the hospital so badly. It's so hard to sleep there and it's so uncomfortable. After I come home, I have another rough 5 days. I try to start weening off the painkillers about then. Painkillers and I don't mix well. They usually make me nauseous so I try to get off them as soon as possible. 

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

 For the most part, I'm able to do everything I did bt (before tumor) I try to avoid roller coasters or anything that could hurt my neck. I feel my neck isn't strong and since I still get headaches/head pain frequently, I shy away from activities that could make it worse. I may always have part of this tumor in me unless the dr's decide to try to go in and remove the entire thing. In that case, I'd be deaf in one ear and possibly have facial paralysis and swallowing issues. I really hope that never happens. In the meantime, I enjoy my life fully everyday. I think God for all my blessings and even my hard times. It is what makes us stronger people. 

Lori Carlberg

beachmama2005@yahoo.com

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Case Study # 25: Rachelle Magill and The Story of Her Orbital Schwannoma

Hello everyone!  We are pleased to bring you our 25th case study, this one the story of our friend Rachelle and her battle against an Orbital Schwannoma.  This kind of Schwannoma is an extremely rare one, and Rachelle was kind enough to share her story so that we would have a 2nd Orbital Schwannoma Case Study in our online archive.  If you would like to read our other case study on this subject, click the link at the end of this article.

We sincerely thank Rachelle for sharing her story, and hope that it is of use to those who are struggling with this same kind of Schwannoma.

Best to you all, Neil Myers - page coordinator
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1)  How old were you at the time of your diagnosis? 

Age 45

2)  Do you have any history of Schwannomas in your family?

No history in my family, but I was diagnosed with a lazy left eye as a child.

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis? 

My left eye started bulging in 2003 and it was suggested it could be a thyroid condition.  I went to my primary care doctor who did not agree it was a thyroid condition since it was only one eye.  The primary care sent me for an MRI and the eye surgeon thought it was a hemangioma  and it would fall right out.  During the surgery he found it was a schwannoma and removed part of it.  Since it was in my left eye orbit pushing my optic nerve, he was worried about removing more since I could lose my vision.  At that point it was just being monitored.

Over time, the schwannoma grew and then I could not close my eye all of the way.  The lower lid was being pushed out in the inner corner so one could see the redness of the inside lid and my eye was painful due to not being able to close.  The time had come for a second surgery.  This was in 2015.

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet) 

 A Y shaped piece of bone in the left corner of my eye was removed (part of where the eye brow is and the top of my cheekbone to where they meet the temple) and the schwannoma was partially removed, it was explained it was like peeling an onion.  The bone was then put back in and that was that.

The second surgery was done the same way as the first as far as access to behind my eye.  I now have a new surgeon since my original surgeon retired.  The new surgeon said she used a device like a Q-tip to remove the tumor since a knife is too risky due to the optic nerve.  She likened it to an ice cream cone with the pointed bottom lying sideways (which would be the back of my eye socket) and the material behind my eye ball being like sticky jello in the cone, and trying to remove tumor.

After both surgeries I had peripheral double vision in the left eye but it was dramatically increased with the second surgery.  I had glasses with a built in prism after the first surgery but had to get a Fresnel (stick on) prism for my glasses after the second surgery.  The Fresnel was difficult since it diffused light in strange ways and made it difficult to see well.  I had strabismus surgery in 2016 to correct the double vision as much as possible.  I have only a small built in prism now and I can function much better.

I have had a significant amount of occipital nerve damage and pain as a result of the first surgery.

My second surgery was deemed successful but the swelling in my eye only decreased to a point.  The MRI I had 6 months after the last surgery (2015) showed the tumor grew back to almost the size it was prior to the second surgery.  It is lying in a little different place so I can close my eye all of the way but I will be having my next MRI on Friday since I have to have one every 6 months along with visual field tests.

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?  

Go to a doctor who has done this type of surgery before and one who is a neuro-opthamologist.  Don’t waste time by going to someone who has no experience since your vision is at stake.  Don’t be afraid to get a second opinion and don’t hesitate to go to someone else who may be more qualified.  The first surgeon I saw gave me a difficult time about getting paid by my insurance, so I found someone else, even though I believe he was a qualified surgeon.  The waiting game is a good idea but I got to the point where I could no longer wait for the second surgery.  I probably could have waited longer to have the first surgery but I agreed to it since the doctor thought it was a hemangioma, not a schwannoma.  But I still felt better knowing what was in my head after I found out what it was from the first surgery, and that is was not cancer.  If you don’t feel confident with the opinion you have gotten, consider contacting places like Johns Hopkins or Cornell Weill who will look at a condition without seeing you.  It is out of pocket costs and you have to get paperwork, etc together, but those options are available.  I considered this route but since I live in the Boston area and can be at Massachusetts Eye and Ear Infirmary inside of ½ hour, I decided against it, especially since I had seen the surgeon I decided not to use-I considered him a first opinion.  I also feel at this point I know I will have surgery if I cannot close my eye or a condition like that happens.  Other than that, I wait and get monitored.  The recovery is awful so as long as I can see, I am waiting.  I was also told if my double vision gets worse, I can have strabismus surgery again without schwannoma surgery.

6)   Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet) 

The positive things from recovery have been working with a good pain clinic and PT and OT to learn how not to have as much pain and how to set up my desk at work, etc, so the pain and double vision doesn’t interfere as much.  As I stated earlier, the strabismus surgery was very successful but all is not perfect and my eye is still protruding.  But I am much better than before.  The most difficult too was waiting for the swelling to go down so I could get new glasses.  I am fortunate to have an optometrist who will spend a lot of time with me to prescribe glasses.  Many people do not know that an opthamologist cannot write a good glasses prescription since they do not really work with the movement of the eye, only eye diseases.  An optometrist specializes in eye movement.

 7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors) 

 I am not able to do what I was able to do before.  I cannot drive for as long of a period of time since it takes more concentration to be looking in one direction (like straight ahead) for a long time.  I cannot exercise the same due to the fact that I get off balance with the double vision and also with some of the nerve pain.  I get exasperated more easily because I cannot do what I was once able to do, but it is more from the pain than the vision.   I also cannot read for as long of a period of time as I used to be able to.  And I cannot sleep in the same positions as I used to since my eye bulges.  But I am not any younger either (I am 59), so that too has something to do with it. 

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Here is the link to our other Orbital Schwannoma Case Study:
http://schwannomasurvivorsandfighters.blogspot.com/2015/05/case-study-16-susan-hicks-and-story-of.html

And if you'd like to speak to Rachelle, you can email her at: Jerseygirl057@aol.com 

Using Legal Cannabis to Control Schwannoma Nerve Pain, One Patient's Perspective

Hello everyone! In this article we are featuring a short letter from a friend of the Schwannoma Survivors & Schwannoma Fighters page named Nirit Avnimelech. She lives in Israel and uses legal Cannabis to control Schwannoma related nerve pain. Nirit was kind enough to detail some thoughts how Cannabis has helped her regain her life after dealing with a Schwannoma - and we appreciate her taking the time to do so. - Neil

*Notice: the Schwannoma Survivors & Schwannoma Fighters page wishes for everyone to make certain, before they consider the medical use of Cannabis to control Schwannoma related nerve pain, that they are fully aware of the laws regarding Cannabis usage, and that you follow the laws according to the place where you live. (In the United States, medical Cannabis / Marijuana laws may vary from state to state, so checking is extremely important to be sure you never violate the law.) For ourselves at the SS and SF page, we take no position on medical Cannabis other than what may be supported or suggested by one's own doctor. However we feel that a perspective is useful, and we want people to have a full slate of information when deciding upon a primary means of pain relief.

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Nirit writes:

Hi Neil, I'll be glad to write about my experience with cannabis.  

I'm from Tel-Aviv, and I get *subsidized* legal medical cannabis. My schwannoma was C.E. (L3-L4), and post-op I was on a cocktail of painkillers, which I really hated, and which many of your readers probably know well (even though the brand names may differ). Tramadex,(Tramadol) Targine (Similar to Oxycodone). They were effective regarding the pain and paresthesias, but I was drowsy, dry, had blurred vision, and, in general, couldn't get on with my life.  

I started taking cannabis after I got off most of them. My cannabis dose is about 0.1 gr (It's really a tiny bit), and I inhale it only when needed, as opposed to oral medicine that has to be in your system 24/7. I'm getting a low-THC, high cannabinoid variety, so I'm never high. Side effects are minimal (Very different from person to person - for me my heart rate is elevated for the first half hour), but it takes 3 minutes and I'm perfect. An additional benefit is that I can really monitor my leg - I know when it's worse or better, and can now study what is good for me (walking) or bad (standing for a long time), which you can't do when you're on painkillers all the time. Plus, as I get better (lot's of physical therapy) I can decrease the dose. I now take it maybe 2-3 times a week, before I go to sleep. That's it.  

And the best thing is that it's out of my system by the time I wake up (I can sleep!!!!), so I get up in the morning, work full time, drive, go out, have fun, and live a normal life. Not semi-normal. Normal. To the point that I'm totally off disability, and think of my medical condition only once every 3 months, when I have my follow-up MRIs. And - one more thing I need to mention - I'm not the type that uses drugs or alcohol. I'm a middle aged women, a very boring statistician, so really - I'm not advocating drug usage here. This is medicine, and it's the best medicine for me. I don't even want to imagine what my life would look like if it weren't for medical cannabis...

A Doctor Who Had a Schwannoma Tells His Story

Hello everyone!  And we wish you a happy and healthy 2017!

Today we have the unique privilege of featuring our first ever narrative written by a doctor who had a Schwannoma.   

Dr William Taylor is an highly experienced pain management specialist who practices in North Carolina.  He was kind enough to share his story, from the perspective of both being a patient, and a trained MD.  We sincerely thank Dr Taylor for his contributions in helping Schwannomas be better understood - and we trust you will find his story and perspective an interesting read! - Neil 

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Dr Taylor writes:

I had the schwannoma at the so-called cauda equina, where the nerves to the legs leave the bottom end of the spinal cord, at the T12-L1. Intradural and extramedullary.

It began with foot pain, especially standing barefoot on hard surfaces.  More specifically the ball of the foot where the toes attach to the rest of the foot bones.  Shortly afterward I began having decreased sensation from the midfoot out to the toes, followed by cold sensitivity and very uncomfortable paresthesias (pins and needles sensations).  My internist referred  me to a podiatrist and a neurologist.  The podiatrist took x-rays (normal) and injected steroids into my toe joints without much relief.

 After 5 or 6 months I saw the neurologist, whose exam confirmed the sensory deficit.  He and I both thought this was similar to diabetic nerve damage, although I am not diabetic.  Ho sent off an extensive set of blood tests looking for correctible causes of nerve damage such as B12 deficiency, syphilis, HIV, and autoimmune disorders, all of which were negative.  When he did my nerve conduction velocity and electromyogram, which confirmed the nerve damage, he said I had idiopathic (unknown cause) peripheral neuropathy, although one test was still undone.

That one test was a lumbar spine MRI, done because rarely people with narrowing of the spinal canal or disc disease can have somewhat similar symptoms.  The afternoon after the MRI, the neurologist's office called to say I had a tumor at the base of my spinal cord and to refer me to a neurosurgeon.

Imagining the worst, I  reviewed a copy of the MRI report, which described an intradural, extramedullary mass, most likely a myxopapillary ependymoma or, less likely, a schwannoma.  I remembered that these were rare benign tumors that arise from the cells that form the sheath around nerves.  A few minutes on the internet found typical MRI images, and youtube had a video of the surgical removal of one of these tumors from the spinal column.

There were lengthy delays scheduling the neurosurgery visit and then scheduling surgery, but I  went under the knife November 2013.  Afterwards they told me that the tumor was a schwannoma.

I asked the neurosurgeon whether the nerve damage was entirely from mechanical nerve compression or whether there were other toxic effects from the tumor.  He thought it was entirely mechanical compression, although I remain skeptical.

Three years out, the paresthesias have mostly gone, but the sensory loss, cold sensitivity and pain with pressure remain.  Pressing the gas pedal with my foot is painful, so you can imagine what walking is like.  I wear sandals and socks at work, Teva  mush flip flops or fleece lined slippers at home.  In addition, I have back pain at the laminectomy site on standing, but I can ride a bicycle a few miles if I pedal with my heels or  foot arch.

My pain does ok with round the clock Tylenol and gabapentin 300 mg twice daily, with a rare oxycodone for bad days.

Comments:

1.  All doctors encounter patients with horrible diseases during their training and practice.  Even though my condition limits me, I consider myself lucky  that I have been spared something much worse, so far.   At 69, I'm living on borrowed time anyway.

2.  21st century medicine, for all its faults, is a miracle of humanity.  I'm particularly grateful to my neurologist for ordering the MRI, and for imaging technology that makes diagnosis easy and painless.

3.  Patients have a wealth of information accessible online; it's vitally important to know as much as possible about your condition, and much easier than it used to be.

4.  Rare diseases are, in the aggregate, not so uncommon.  Every few days in practice there will be someone I see with a condition that I only read about in medical school.  Often, they had a long road to finding a diagnosis.

5.  After my misadventure, I read an article about peripheral neuropathy which said that MRI imaging is generally not cost-effective.  The medical high priests who write articles like this are not accounting for the immense suffering that happens when diagnoses do not get made.

6.  My foot pain is still enigmatic.  Is it directly from nerve damage, or is it from loss of muscle and muscular padding.

7.  I would have surgery again, even though the results were less than complete recovery

Pain Management:

I don't know anything about Schwannomas in general except what is widely available.   But I practice in medical pain management and can review a few ideas:

1.  Gabapentin (Neurontin) and Lyrica are widely used for pain that arises from nerve damage,, especially for diabetic neuropathy.  Gabapentin is the older generic and Lyrica is the fancy brand-name product.  Because schwannomas are so often associated with peripheral nerves, a serious trial of one or both of these is in order for anyone with a Schwannoma who is having difficulty with pain.

2.  Opiates:  The government is cracking down on doctors who prescribe opiates for people with chronic pain, but they are all we have for severe pain, and people with schwannoma may need to be maintained on long-term opiates if they have incapacitating pain.  These drugs are addictive and widely abused, so patients and doctors need to be very careful.  Commonly used ones are oxycodone, oxycontin, morphine, and methadone.

3.  Suboxone (buprenorphine)   This is only approved for addiction treatment, but it is very helpful for many patients with chronic pain and can be prescribed for this reason.  It is an opiate but seems to be much less addicting than regular opiates.  I saw one reference which said it was particularly helpful for nerve pain of the kind that would be expected with Schwannoma.  There are only a few places in the country where it is used for pain management, but my practice has had good results.  I would try this if my schwannoma pain were worse.

Best wishes to anyone  dealing with this challenging condition.

William F. Taylor, MD

( Web address for Dr Taylor's practice)

http://www.pmservicesnc.com/providers

Disclaimer: Dr. Taylor and Pain Management Services assume no liability whatsoever for the comments or advice offered in the content of this blog.  Dr. Taylor has offered his advice generally on the issues relating to treatment of Schwannomas - however Dr Taylor 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.

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.