Saturday, August 9, 2014

Schwannoma Case Study #9, Lauren Findlay and the Story of Her Trigeminal Schwannoma

Welcome to Schwannoma Case Study #9!  This one features our dear friend Lauren Findlay and her story of battling a Trigeminal Schwannoma.  (In the most basic definition, Trigeminal Schwannomas affect a major set of nerves running toward the face, jawline, etc) This kind of Schwannoma is one of the less common types, but I seem to get a lot of questions about it - so Lauren was kind enough to want to help others by sharing her story by way of one of our case studies.  We thank Lauren very much for her time and wish her all the best in her recovery! - Neil


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


I was 29 years old, but i first noticed a small lump in my jaw area when I was 25 years old. I had it checked and was advised at the time it was just a swollen gland or excess tissue.

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

No family history. I did work in a Dental Practice from the age of 17-25 working alongside X-ray machines/radiation and there has been a link/research into schwannomas from radiation exposure.  

(*Note from Neil; web MD lists radiation exposure as a possible link to a certain number of Schwannomas - and there are genetic conditions like the more serious condition of Schwannomatosis that predispose a person towards Schwannomas.  Other information sites list the causes of Schwannomas as unknown.  However a sizable number of the members of our group did anecdotally relate some experiences of radiation exposure - though this was an unscientific poll of our group only)


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

I had found a small pea sized lump in my lower left jaw area 4 yrs ago causing me no symptoms or pain and at the time I was advised it was nothing to worry about. In November of last year I woke one morning to swelling around the area, tightness of the area and noticed the small pea sized lump had grown to the size of a grape. I had also started to experience vertigo/dizziness and I had severe migraines building up. I was on a pain killer called Tramadol for the migraines and another for the vertigo but I now forget what this one was called. I went to my Dentist with it being in the jaw and he referred me on to a specialist at the hospital where I had an X-ray taken (not much was seen on the x ray), I then went in for a Biopsy but with the tumour being like a hard capsule they struggled to get a decent sample and as expected the results came back inconclusive. I then had an MRI scan and it was after this that I found out it was either a schwannoma or a neurofibroma (during surgery it was confirmed as a schwannoma).
I then met with the surgeon/specialist who was going to do the removal of the tumour for me. He advised of his experience over the years but did mention he hadn't seen anything quite like this before and did consult with his colleagues on it. But I felt I was in great hands and was extremely comfortable for him to carry out the surgery.  
From being referred to the hospital to being diagnosed and then to having the surgery carried out I was 7 months in total. 



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 was advised of the possibility of nerve damage to my facial nerve. If the schwannoma was inside or entangled in this nerve it would need to be removed and they would take another nerve from my neck that gives feeling to the ear and graft that in its place. This process could take several months to a year to work and could result in my lip at the left hand side "drooping down", and leaving me with no feeling down this side. Even if he didn't have to remove the nerve, I could still have ended up with damage or paralysis to this as nerves are extremely sensitive and stretching and moving of them can cause the same problems. I was to be cut from the top of my ear down to my midline neck in order to give enough access. The prospect of both upset me as I worried my new appearance would upset my 5 year old son but I knew I had to have this removed as the dizzy spells and migraines were unbearable and also, removal was the only way they would be able to 100% confirm it was a benign tumour (in most cases these tend to be!).
I went in for surgery 8am on a Tuesday morning , and was in theatre by 9am, out for 12.15pm in the recovery room. I woke to some pain and was given an injection to ease this aswell as another for the sickness I was feeling (this was either a reaction to the general anaesthetic or the morphine I had been given). The rest of that day is a bit of a blur. But I do remember when I got back to the ward I requested a mirror to have a look at the "damage". I was actually so pleased with the end result. Although the scar down the side of my face was a bit upsetting the surgeon had managed to "lift" the facial nerve and remove the tumour without causing much damage. The stitches were placed inside/under the skin and so they were not visible. I also noticed I had bruising along my forehead and the beginning of a black eye. I'm still unsure if this was down to some sort of clamp they had to use to hold my head in place during surgery or if it was just pressure as they were working below this area.
Eating was difficult for the first while as my jaw was swollen and tender and felt very fragile.
Two weeks on and I look almost back to my usual self again apart from some slight swelling still to go down and the scar down the left hand side of my face. It's healing well and fast though and in no time it should just be a thin line hardly noticeable. 

I still suffer with migraines although not as bad and I am still feeling quite dizzy. I have been advised this is due to them working in and around the inner ear causing me to be off balance. My employment consists of me driving quite a bit and spending periods of time on my own in empty houses/flats so I am still off although if I had a more office based role surrounded by others and with no driving I feel I could be thinking about a return to work soon.

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?


Best advice I could give for this one would be to make a list before you go for your appointment and go through that list one by one with your doctor/surgeon. 

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 am recovering very well 2 weeks after surgery. Although not confident to drive distances etc yet due to the dizzy spells and also the stretching of my stitches down my neck I am up, out and about going for plenty walks/fresh air which I find has helped my mood as being stuck in the house on your own can leave you feeling sorry for yourself.
 My scar is fading fast and swelling is very minimal now.
I had been keeping on top of medication given to me as pain relief from hospital but I am now completely off them and all I take is something every now and again for my migraines and anti sickness tablets for the dizziness. 


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)



Other than driving just now I am able to do everything the same as before. I have no regrets about having my surgery. 
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