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

Case Study 32, Nadia Oshry and her Experience with Vagal Schwannoma

Hello all!  Welcome to our 32nd case study, this one from our friend Nadia who details the experience of having had a Vagal Schwannoma.  We sincerely thank Nadia for being willing to write out the details of this difficult experience.  And we hope that this study will be useful to those of you who are dealing with Vagal Schwannomas. - Neil
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1)  How old were you at the time of your diagnosis?

32

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

No known history of Schwannomas in my family.

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

I had no specific symptoms. In fact, the way I was diagnosed was completely random. I visited a Gastroenterologist for some unrelated stomach issues, and while he was conducting a physical exam on my thyroid, he stumbled across a hard lump in my neck. The actual diagnosis of the Schwannoma took 2 months. My Gastroenterologist referred my to an ENT Surgeon. He sent me for a number of initial tests, including blood tests, an ultrasound, ultrasound guided FNA biopsy, followed by a CT scan, chest X-ray and abdominal x-ray and finally an MRI. The additional tests were largely to rule out lymphoma. Unfortunately, my first FNA was inconclusive, however the MRI indicated a likely Schwannoma, sitting on either my Vagal Nerve or Sympathetic Nerve and was also displacing my jugular vein and cartoid artery. It was ~2.5cm by 2cm in size. The ENT Surgeon's recommendation was to wait for six months and monitor via MRI. 

However, I opted for a second opinion. Given the positioning of the tumour, I consulted with a Vascular Surgeon. He sent me for another biopsy; this time a CT-guided biopsy by an expert radiologist. The biopsy confirmed that this was a nerve tumour, but could not decipher whether or not it was malignant. By this time (~2 months from initial ultrasound), the tumour had already grown and the surgeon recommended surgery. His reasoning was that: (a) the tumour had already grown and it was unclear whether/not it was malignant (although he believed it was likely benign), (b) these tumours have a tendency to erode nearby structures and given the proximity to my cartoid artery and jugular, it was risky to leave it and (c) if the tumour were to grow by another 20%, the surgery would become increasingly complex and risky. I opted for surgical removal.  

 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)

My surgery was completely successful. It took 2.5 hours to remove the tumour in its entirety (even though they had anticipated a 4-6 hour surgery). During surgery it was discovered that it was a Vagal Schwannoma. My surgeon managed to save the nerve, and had to make minor repairs to my cartoid artery and jugular vein after removing the tumour. 

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?

 1. Asking the surgeon how many times they have seen similar cases and operated on a schwannoma. The ENT I went to said he had last seen one of these 20 years ago, and he had to consult with multiple experts to get a diagnosis and to decide on a plan of action. Those were both red flags for me.

    2.  Asking about the potential risks of surgery vs the risks of a more conservation approach of "watch and wait". Understanding the potential risks and side-effects are important to make an informed decision.

  3. Asking about the recovery process e.g. how mobile will you be? How long after surgery will you be able to eat? How long will you be in hospital? I found these helpful to plan for the surgery and post-op process. 

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)

My Schwannoma was removed 3 weeks ago. I spent three days in high care after the surgery. Amazingly, I could already eat solids the day after surgery. The next week was the toughest part, mostly because of the side-effects of the anesthetic, morphine etc. and the sheer exhaustion of physical activity (even just sitting on the couch chatting to friends). In the last two weeks, I've felt a bit better each day. I'm slowly starting to exercise again and get back to normal life. However, there have been two lasting side-effects from the procedure: a hoarse/weak voice and coughing. My surgeon referred me to a specialist ENT at a Voice clinic. After some tests, he discovered that one of my vocal cords is paralyzed, and it seems that the disruption of my vagal nerve has caused the coughing. I'm starting medication soon, as well as rehab with voice therapists (including electrical stimulation) so I'm hoping I'll be back to full strength in the coming months.

The things that have been of most help are:

1. Staying with my family for 2 weeks post surgery. Although I wanted to go back to my own space, it was extremely useful to have people to help shop, cook, drive me to follow-up appointments and generally assist me.
2. Seeing a physiotherapist. I was fortunate that my surgeon has a fantastic physio who works with him, and who helped me in-hospital with my back and neck muscular pain. She has also assisted in some rehab post-op which has really increased my mobility and re-integration into my normal life. 
3. Rest, rest, rest. Although the temptation is to rush back into normal life, I took two weeks off work and spent alot of time sleeping and resting. When I returned to work, I worked for half-days to ease back into it. Don't underestimate what a toll surgery takes on your body!

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If you have a Vagal Schwannoma and wish to write her, Nadia's email address is: nadia.oshry@gmail.com