Welcome to Schwannoma Case Study # 8! This one features our friend Kayla Collins and details her experiences with Acoustic Neuroma / Vestibular Schwannoma. (These are also sometimes referred to as Acoustic Schwannomas - the three names can sometimes create confusion ) In our case study series we are trying to get as many different stories as possible, and I felt early on that it was very important to get the story of a survivor who had experienced an Acoustic Neuroma. Myself and others in the group Schwannoma Survivors & Schwannoma Fighters want to thank Kayla immensely for her well written and very detailed story - and we hope it is of use and interest to you! - Neil
_______________________________________________________________
_______________________________________________________________
1) How old were you at the time of your diagnosis?
48
48
2) Do you have any history of Schwannomas in your family?
No
No
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
My schwannoma was a skull base tumor. It sat between the cerebellum and pons, otherwise referred to as the cerebellopontine angle. Final diagnosis was that it was an Acoustic Schwannoma.
I had symptoms for over a year. They were symptoms I could easily write off such as clumsiness (because I am) but gradually became more pronounced. Tripping and noticing an increased lack of coordination were becoming more evident. I am a runner and I began to notice that I couldn’t turn my head to look for traffic without becoming dizzy (and eventually not able to at all). Or look up at street signs without feeling like I would fall backwards. Balance was increasingly more difficult when running as I noticed I really had to pick up my right leg as to not trip.
Also during this time I noticed my eyes didn’t seem to focus right. I couldn’t seem to see right with my contacts and wore my glasses but it was still difficult. I had gone to progressive lenses so I thought that I just wasn’t used to them or the prescription wasn’t quite right.
When the right side of my face went numb and never came back I knew something was wrong. However, being extremely busy with work, school, coaching, moving – I felt that I was maintaining and would try to prepare for what may lie ahead. Knowing I could not close that can of worms once opened, hence MRI, I started preparing. I never said anything to anyone until I got moved, finished coaching and completed my finals. I made an eye doctor appointment to confirm it wasn’t my eyes and when that was done I called my doctor.
I had my MRI, confirmation of brain tumor and an appointment with a brain surgeon within that week. My schwannoma was larger than the doctors are used to seeing. Because I had severe symptoms they couldn’t determine which nerve the tumor was attached to-. I had symptoms from the trigeminal, optic and acoustic nerve. I was not confirmed until I had the surgery.
My schwannoma was different than the textbooks in the fact of the direction it was growing. End result is that I had an acoustic however I did not have the normal symptoms for that type.
Usually when people find out they have an acoustic, the thing that brings them to the doctor is that they suddenly lose their hearing. They have it one minute and then it is suddenly gone and doesn’t return. After I was diagnosed with the tumor, I did have a hearing test and had slight hearing loss in that ear. It was so minimal I didn’t even realize it. I was told that if it was an acoustic that I would lose my hearing because that nerve would be severed to remove the tumor. This is indeed what happened. Also, I never had headaches, which is a common symptom.
My tumor was growing in the direction of my brain stem as opposed to outward and into my ear canal. This is what caused all of my other symptoms. The tumor was pressing on my trigeminal and optic nerves and had grown to almost 4 cm. This was too large to do any type of laser radiology and must be done via craniotomy. Had I gone in a year earlier it might have been small enough to do via gamma knife (pinpoint radiation).
I found it interesting in my research and talking to doctors, that there are a lot of people that have different types of brain tumors that are discovered by MRI’s done for other reasons. Discovered quite by accident and don’t encourage doing anything about them unless they cause symptoms. My doctor thought I could have possibly had this tumor for 25-30 years. The tumor itself didn’t cause any problem, it was the fact that the tumor grew and pressed on the other nerves and my brainstem that caused the problem.
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?
I had a keyhole craniotomy, or Retro-sigmoid craniotomy. This is an incision behind the ear (my incision is probably 6 inches long). This gives the surgeon access to the cerebellum and brainstem. I also had a drain for cerebral spinal fluid, or CSF. I think it is important to mention this because it was an option that my surgeon wasn’t sure he would do. This is a device that relieves elevated intracranial pressure. He did opt to insert the drain and it turns out that it was needed in my case. Had I not had this the pressure would have built up in my brain and would have caused emergency brain surgery which would have been much more difficult to recover from.
My surgery was a complete success. They were able to resect my tumor 100% so there was no followup of radiation. The healing was very quick. Staples and stitches were out within 2 weeks. Each day I was stronger and saw progress.
My surgery was January 31, 2014. I am about 4 ½ months post op at the time of this writing. My dizziness was immediately better. I have noticed that when I turn quickly to look right my head is still swimming a little – but it is SO much better. I can only hope that will be better as I continue to heal. The right side of my face as well as my teeth and gums are still numb. Not totally numb but it feels like it’s asleep, sort of. I completely lost my hearing which has been an adjustment. I am hoping to research and see if some type of implant might be an option to help regain that – but I haven’t pursued that yet. The absolute worst part of my post op was my right eye! When I came out of surgery the right side of my face was completely paralyzed. Each day it was a little bit better and today is almost normal. Most people can’t tell any droop or notice my eye unless they really look. But after surgery my eye wouldn’t close at all. I had to tape it closed and wore a patch. It was extremely sensitive to light or wind (even the ceiling fan or AC). Blinking in not over rated!! I used ointment and gel drops constantly. My vision was affected. I couldn’t hear or see and was pretty frustrated. At about the 3 month point I was able to return to work and my eye was finally on the mend. It still doesn’t blink as much as it should but is SO much better! I work in an ER for 12 hour shifts and it is pretty physically demanding. I was able to return April 1 and have done great. I also returned to school on May 5. Looking at a computer has been a little difficult as my vision isn’t 100% yet – but again, things are getting a little better every day and I trust I will have 100% recovery, except for my hearing.
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?
The most difficult thing for me was finding the right doctor. First of all, this is a fairly rare tumor. Usually these tumors are discovered and dealt with when smaller so surgery isn’t necessarily needed. The route would be gamma knife or something in line with that. What this means is that this isn’t a “routine” type of surgery – one they do every day. I wanted to make sure my surgeon had performed enough of these that he knew what to possibly expect. I went thru several doctors and liked them all. I totally went with my gut as to who to pick. When I asked the specific question of “How many times have you performed this surgery”, I was told by the first two doctors that they had done enough and had plenty of experience – but no number. The one I chose gave me a direct answer that he had performed this procedure over 20 years and does 5-10 a year (he does the most in my area). I just thought that if he does the most around here and only does this many, how much experience could the others really have? I think they were probably fine, I really liked them, it was just my gut telling me to go with this doctor. I will also mention that I had already scheduled my surgery with another doctor and changed just a few weeks before. When I went to see him, I was candid and told him I was just getting another opinion to see if he could tell me anything I hadn’t yet heard. He didn’t tell me anything different – but his willingness and understanding to talk to me knowing that it was only a consult and I had already scheduled – his demeanor of experience – just made me change. I say this just so you know and realize that this is your journey and you are in control of it. Don’t be scared to hurt feelings. I felt terrible to cancel on the other doctor but it was MY brain they were cutting into and I had to make the best choice for me! It was nothing personal.
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?
I think I have already covered this in the above question but I will say….keep it positive! You have had major surgery (mine was 12 hours long) and you are going to need to be gentle with yourself. I finally let this be a ticket to let my family take care of me…for the first few weeks anyway.
I was supposed to be in the hospital 2 weeks – I was home in 5 days. I didn’t overdo it but I did keep moving . In the hospital I was walking the halls, when I got home I was walking the neighborhood – not by myself (I couldn’t see or hear on the right!) Don’t get lazy – your body will thank you for it. I was discharged from the doctor with no restrictions at 6 week’s post op. I ran 6 miles the next day – I knew I was back on the road to my life and was/am so blessed and grateful to be living it! Yes, I have a few deficits – but it is my new normal…I’m good with that!
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)
Except hear in my right ear I am blessed to be able to do everything I could before. I am more careful when it comes to balance, like getting up on a ladder, than before. I move a little slower because I am a bit more cautious.
