Case Study #35, Meera Joshi Shares the Story of Her Spinal Accessory Nerve Schwannoma

Hello everyone!  And welcome to our 35th Case Study!  This one features the story of our friend Meera Joshi, who battled a spinal accessory nerve schwannoma and was successfully treated by Dr Netterville at Vanderbilt University.  We hope you find this story useful, and we thank Meera for sharing her story! - Neil
_________________________________________________________________________

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

I had just turned 27 years old during my time of diagnosis. 

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

No - None that I know of. 

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

diagnosis? 

My Schwannoma was located by my skull base and under my left ear. The tumor itself was quite large and bulging out of my neck but it was hidden behind my ear, so I never noticed until I got diagnosed. 

I was moving to another state and all the lifting of boxes caused me a lot of left shoulder pain. I was massaging my neck and noticed that I had this huge lump under my ear. My fiancé, who is completely his residency, did a brief check around my neck and suggested I make an appointment with an ENT as soon as possible. 

After several different tests suggested by the ENT (Ultrasound, CT Scan, MRI, and Biopsy), he concluded that I had a Schwannoma Tumor on my Vagus nerve. I then went to go visit a surgeon out of John Hopkins who had me get another MRI that was specific for the head and neck – she/the radiologist concluded that tumor was actually on the spinal accessory nerve that went to my left shoulder but there was no way of being 100% certain until they were able to cut me open. 

I have had pain on my left shoulder for the past ten plus years and just blamed it on being lefthanded and using that hand/arm dominantly but after being diagnosed it all made sense. The most recent symptoms, before I had my surgery, were a fire like pain on the muscle of my left shoulder. Some days it was so uncomfortable and unbearable. 

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 will never forget the day I had surgery.... March 5, 2019. I would say that my surgery was a SUPER success. 

I was extremely unhappy with my surgeon at Johns Hopkins and decided to wait to pursue any kind of surgery until I found the most skilled surgeon who I felt comfortable with. It was an extremely long, nerve wrecking, and heart wrenching process to find a surgeon who specialized in removing Schwannomas successfully. I searched for two years to find a surgeon who was willing to operate on me without leaving me with lifelong neural disabilities on my left shoulder/arm. 

Through this very blog, I was able to find Dr. James Netterville at Vanderbilt University. He is not only an extremely skilled surgeon but also an amazing and compassionate human being who truly cares about his work and his patients. I booked an appointment to see him and as soon as I met him, I know he was the one who was going to help me through this. 

Dr. Netterville and his team are skilled in performing surgeries to help minimize the risk of nerve damage. They used the method of Electromyography which helps with recording the electrical activity of muscle tissue using electrodes attached to the skin and/or inserted into the muscle. During my surgery, the surgical team found that my tumor was actually on a sensory branch nerve (which was the best-case scenario) and they proceeded to cut the tumor and the nerve out from each end rather than using the technique of Intracapsular Enucleation. Removal of the tumor/cutting the nerve has left me with no sensation on my left ear which I am slowly getting used to as the weeks pass. 

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? 

Some of the most critical questions to ask include:
1) Do you have experience with Schwannomas?
2) If so, how many and what kind of surgical method did they use for the removal? 

3) What are the risks of leaving the tumor alone vs removing it?
4) What their patients’ post-operative outcomes and recoveries were like? 

From my personal experience, if you do not feel 100% comfortable with the surgeon you are seeing do not continue to see them. Bedside manner is just as important as their experience and skill. 

6). Can you describe what the recovery process was like for you - if you feel that you have made a positive recovery…and what things you have done which have been of most help to you?  

My recovery was not what I excepted at all. Since my tumor was coiled up in many nerves including the spinal accessory nerve that went to my shoulder, they had to carefully and skillfully move them all away from the tumor to remove it. I woke up from surgery with all the pain in my shoulder gone but since they had to manipulate the nerve, as a defense mode my shoulder was shrugging. For the first few days, I had to constantly remind myself to relax it and push it down. 

I had a drain sticking out of my head for three days to let the access fluid drain out which was extremely uncomfortable once the anesthesia wore off. My neck was extremely stiff and I had no sensation under my left jaw, on my left ear, and the left back side of my head (this has all slowly come back). I was surprisingly in not much pain at all. In fact, I was able to do almost everything after surgery except lift anything above 5 pounds. 

My surgical team told me that it would take me up to a year to recover and my swelling would go up and down throughout the year. I went back to work three weeks post-surgery which I would say was too early because I would get extremely tried but I wanted to get back into the routine of things quickly which I would say was one thing that actually really helped me recover even faster.  I would say that my recovery has been extremely positive. 

7).  Are you able to do most things that you did before?

Now 10 weeks post-surgery, I am able to do everything I used to before my diagnosis and surgery. The stiffness in my neck has gotten much better and I have almost full mobility to move my neck. The area where the stitches were do get a little stiff some days, but I believe it will get better as time passes. 

*If you have this kind of Schwannoma and would like to speak to Meera for advice, feel free to email her at: meera0503@gmail.com