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1) How old were you at time of diagnosis?
I was diagnosed when I was 43 years old. ( 2012 )
2) Do you have any family history of Schwannomas in your family?
As far as I am aware, there has never been any history in my family of Schwannomas, but I do have relatives overseas & can't be to sure on that side of the family. But I don't ever recall anyone mentioning anything about it.
3) Where was your Schwannoma located & what were the symptoms that lead to your diagnosis?
My Schwannoma is located on my Third Cranial Nerve. ( Ocular Motor Nerve Sheath Schwannoma ) This is an Extremely Rare area to get a schwannoma without having Neurofibromotosis 1 or 2 associated with it. Prior to being diagnosed, I was having difficulties with my Vision, Balance, Coordination, & Severe Headaches. My writing has been progressively getting worse as well.
Vision - I was getting double vision when looking up above shoulder height and my left pupil wouldn't constrict. ( adjusting to amount of light let in) There are no problems with the function of my right eye or limitations with the vision. But it does get tired due to doing most of the work. Some days my vision is a lot worse than others.
Balance - I was starting to notice a change in my balance in everyday walking. I was finding it difficult to walk in a straight line. Even on flat surfaces. Upon waking I found it very difficult not to lose balance without holding onto something before moving. If I did, there was a lot of times I would fall into something nearby or fall over. If I stand up and close my eyes, my balance is very unstable So I went to see an Opthamologist, who was the original specialist to diagnose me a Tumor
Coordination- I was misjudging distance when reaching out to pick things up. Stairs were probably one of the biggest challenges I faced, due to misjudging the edges and sometimes missing it altogether.
Writing- due to the pressure increasing on the nerve as the Schwannoma was growing, it was pushing my eye down and out. My writing has become a lot more uneven and very hard to read - even for me.
4) Could you describe in whatever detail possible, what kind of surgical treatment was performed on you Schwannoma & 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?)
Surgery on the Schwannoma has not been done, due to the critical area it is in. ( mine is very much in the middle of the brain) But I have had surgery to my left eye( inferior rectus recession).
This was probably one of the worst experiences of pain I have ever had. ( No disrespect intended for the Surgeon. He did a great job ) But the headaches caused by having normal dissolvable stitches in the eye itself and scratching the inside of the eye lid for 2 weeks, gave me migraine headaches like I have never experienced before, and my neck ached constantly with very little relief from any medication administered or taken orally. The operation itself wasn't successful in realigning the vision due to the Schwannoma still growing at that stage. I certainly would recommend someone to have a good talk to their specialist/ surgeon about it and find out all available options prior to having it done. Especially if the Schwannoma was still growing.
I hava asked about Gamma knife & Cyber Knife surgery, but because of the Schwannoma being deep in the brain- there is good possibility of it damaging the other areas surrounding it, or the the Schwannoma changing and taking on a Malignant transformation.
5) Having gone through the experience, what do you think are the most "Critical Questions" for someone to ask their doctor about surgery & treatment for this kind of Schwannoma.
Q1/ Have you had any experience in dealing with Schwannomas? and if so have you dealt with any in the brain region?
Q2/ Do you understand what symptoms a CN3 ( Third Cranial Nerve Sheath Schwannoma)
can cause? If so can you explain them to me in detail or can I get some Neurologists or Neurosurgeons case study information printed out ( if you try to access some of this information yourself. Some of it is only accessible if you are a doctor/ specialist or pay for a subscription to access it.).
Q3/ What options are there to treat the pain from severe headaches. ( headaches are extremely painful and can reach a 9 out of 10 on the scale)
Q4/ Other than constant pain relief, what other forms of managing the pain are available?
Q5/ What are the long term effects of the medications I will be given, and will they react with any current medications I am on? ( if your on any)
Q6/ What are the best tests available and most accurate to correctly diagnose what I have, if I don't have surgery to do a biopsy to give a positive Identification of what type of Tumor it is?( due to the location of it)
6) Can you describe what the recovery process was like for you and what things you have had done that have been of most help to you? (Also are you free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet?
Currently I have just had my 6th MRI done. My Schwannoma has been stable for the last couple of years. ( size 12mm x 4mm x 3.5 mm) There hasn't really been much done apart from managing the pain and monitoring it, due to its location. There isn't any plan for surgery due to the risks involved, and the outcome may be worse after surgery. I have not really found that pain relief works well. I have been on many different high dose pain relief medications, but I was also diagnosed with a Duplicated Vertebral Artery which may be causing a nerve impingement near C7. So there is a possibility that this may be causing headaches ( as per discussion with neurologist recently) and possibly not the Schwannoma. So I will be going for another MRI in 2 weeks as well as Bilateral Octipal Groove Injections. If I don't have any improvement from these injections, I will then be off to see a Pain Specialist. So I will update this Case Study as new information comes to light.
7) Are you able to do all, or most things you did before? (Also feel free to describe your abilities, even if you are still living with the Tumor or Tumors)
I am able to still do a lot of things I did before, but I have to be very aware of my surroundings, due to misjudging distance and because of the double vision. If my headaches are severe, my double vision becomes worse (I assume from the extra intracranial pressure). Driving at Night is not something I do very much of, due to the headaches caused by the bright lights from on coming traffic.
The sun is definitely a big issue. Without sunglasses( very dark ones) I find it nearly impossible to be outside. I have had to move onto another career, as being a construction worker. The risks of injuring myself or worse (others around me) were becoming very real. My ability to do the same things with my family on weekends has decreased, but they are very understanding.
