Case Study # 33. Dennis Wright and the Story of his Trigeminal Schwannoma & Radiosurgery

Hello everyone!  We are pleased to present to you our 33rd Case Study, this one the story of our friend Dennis Wright and his Trigeminal Schwannoma.  Trigeminal Schwannoma is a kind of subject that we certainly needed more information on, and we are very grateful to Dennis for taking the time to tell his story.  Which is an especially useful one, because he had Gamma Knife Surgery on his Schwannoma - something we also needed to know more about.  We hope you find it useful - Neil 

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Case Study Questions

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

63 (living in Norwich, UK)

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

None 

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

My schwannoma is located on the trigeminal nerve within Meckels cave and affects all 3 points of the right hand side of my face (V1 Opthalmic, V2 Maxillary and V3 Mandibular). 

I was enjoying a holiday in Spain when in the middle of September 2016 I starting getting some “pressure” behind my right eye and some numbness down the right hand side of my face. Over the next 6 weeks the numbness progressively spread to all the right side of my face from just above my eye to just below my lip and also inside my mouth including my tongue. I was now getting constant pressure around my eye and the “pins and needles on the right hand side of my face were now getting very uncomfortable. We telephoned my doctor and he advised me to go to the hospital immediately When I returned to the UK. I went to the hospital on the 12^th November and they gave me an ECG as they thought that I had had a stroke. This was proved incorrect and I was then referred to a Neurologist. On the 16^th November the neurologist thought the problem was migrainous but referred me for an MRI scan just in case. By this time I started to get some horrific pains in the inside of my eye. These came on without any notice and lasted anywhere between 1 and 5 minutes. By this time my medication of Gabapentin had been increased to a maximum daily dose of 3,600mg to try and combat the pain. My first MRI scan in early December showed “an unusual appearance” and I was referred for another MRI with contrast. I was also prescribed morphine as the pain had increased. After one week the dose was increased as it was ineffective. The second MRI found a well defined mass which was probably a schwannoma and was, thankfully, thought to be benign. I was urgently referred to neurology. I was told that the tumour had also increased slightly in size. Zomorph was prescribed to supplement morphine as pain was not subsiding. The local hospital told me they couldn’t deal with my problem and that it had been referred to Addenbrookes, the specialist hospital in the UK for tumours in or near the brain. In February I had a meeting with the head neurologist at Addenbrookes who told me that due to the location of the schwannoma it was too dangerous for them to operate in the normal ways. Therefore he was referring me to “Gamma Knife Surgery”also known as“Stereotacic Radiosurgery”. 

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)

Gamma Knife surgery was performed on me on the 23^rd March 2017. Strangely despite what the name suggests it is not an actual knife at all. Following an MRI on the day to determine the exact location of the schwannoma a metal headset, which looks like a colander, is screwed to your head. You are then placed into the machine that looks exactly like a MRI scanner. Then a single beam of radiation is split into approximately 194 very narrow beams which are directed through the “colander” and converge in the exact centre of the tumour. The procedure is incredible in it’s accuracy and has the added advantage in that it is non intrusive. Without this procedure my schwannoma would not have been treatable. I was admitted to the hospital at 07:30 and left at 14:00!

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?

In my experience most local doctors will not know enough about this procedure to be able to explain it to you properly. You should insist on getting your neurosurgeon to explain it to you step by step and in a way that you will fully understand. I would strongly advise you to make the most of this time and not to leave until you fully understand the procedure and the pros and cons. Obviously you will need to ascertain from the neurosurgeon if this is the only form of treatment for you and the reason why. 

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 was extremely tired for a few days but that was to be expected due to the amount of radiation I was subjected to and also the strong painkillers I was still taking. After that I do not think the actual procedure had any effect on me. My only issue has been that I still need the Gabapentin, which has made me feel drowsy, but I have been weaning off the tablets which has certainly made me feel much better. Obviously with any sort of tumour it is difficult to know what effect the surgery has had as you can’t actually see anything. The positive my family and I were grabbing hold of was the simple fact that if the surgery had not worked then I could not possibly reduce my painkillers. A simple statement I know, but one that is oh so true! I am pleased to say that 3 weeks ago I saw my neurologist after I had an MRI in the morning and he confirmed that the surgery had been successful. Success with this type of procedure is first and foremost to stop the tumour from growing. From there on it is a very slow recovery process, much as the Schwannoma is a very slow growing tumour. I still get a lot of “pins and needles” on the right hand side of my face over the 3 regions but it is not comparable to what I had prior to the procedure. I have to see him annually to check the progress and then, hopefully, every 3 years or so 

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 very close to living a full life, even enjoying a beer for the first time in 9 months. I am still on some Gabapentin and Tegretol but hopefully if all goes well I will be off them in the near year. My wife and I are returning to Spain next weekend and we have just booked to return to Thailand in January. As we had to cancel our holiday there this year we have even treat ourself to fly Business Class. Life feels good and it is all down to my neurosurgeon, Mr Ian Sabin, and Gamma Knife Surgery.

Dennis Wright

Email: djwright1974@gmail.com

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.