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1) How old were you at the time of your diagnosis?
27.
2) Do you have any history of Schwannomas in your family?
I don't know of any.
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
I had two schwannomas. One was in my right C7 nerve, which is part of the brachial plexus. It first appeared as a firm lump on the side of my neck, above my clavicle, with no pain. I was told that it was just a muscle knot. After about a year, I started feeling pain in the knuckles of my index and middle fingers whenever I tensed my arm muscles with my arm outstretched. I couldn't do push-ups or chin-ups without pain. I also experienced a lot of pain while typing as a software developer. I assumed it was an overuse injury and bought a better mouse and keyboard. Two years after I discovered the lump, I returned to the doctor because the lump was undeniably larger. He diagnosed it with an MRI of the neck.
The other tumor was in my right T8 nerve, on the back wall of my chest, approaching my spine. It measured 10 x 7 x 6 cm! The neurosurgeon that I saw for the first tumor suspected it when I told him that I had a stripe of numbness along my side. I had first noticed the numbness seven years earlier. I had also felt weird sensations all around the right side of my rib cage and abdomen for at least the past fourteen years. There were random shooting pains, muscle spasms, and muscle soreness. These sensations did not change over the years. None of the second tumor's symptoms bothered me much until I knew they were caused by a tumor.
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 had both tumors removed, and both surgeries went exactly as planned. A neurosurgeon removed the neck tumor with a supraclavicular approach. He used electromyography and other neural monitoring techniques to avoid cutting any functional nerve fibers while he removed the tumor from the nerve. He also used general anesthesia, because electromyography works best with general anesthesia, and the tumor was too close to the neck for a nerve block.
The second surgery was more complex. It was scheduled seven weeks after the first surgery to allow time for recovery and more tests. A thoracic surgeon performed a posterolateral thoracotomy between the sixth and seventh ribs. This exposed the tumor, and then the thoracic surgeon and neurosurgeon removed it together. They removed the intercostal nerve with the tumor because it was a minor nerve, and it had already been damaged by the tumor.
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?
I can't think of any good general questions. One thing that helped me was making a list of questions ahead of time and bringing them to the clinic on a clipboard. Once, when I was too nervous, the doctor helped me out by taking the clipboard and starting to answer my questions.
Another piece of advice is to consider a second opinion with a neurosurgeon, especially if your treatment would have a less-than-perfect outcome. For example, see if it is possible to have the whole tumor removed without damage to the associated nerve.
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 feel like I've recovered well. The radiating pain from the neck tumor disappeared immediately after the tumor was removed. For the first hour, my arm felt like it was waking up after I had slept on it. It felt perfect after that. I left the hospital early the next morning. Three days after the surgery, I started experiencing every sensation on one side of my forearm and hand as pain. If something brushed my arm unexpectedly, I'd think I was stung by a bug. Once I could see that it was something harmless, I was able to ignore the abnormal sensation. This hypersensitivity didn't really bother me, and it gradually faded over a month or two. Besides that, I didn't experience anything unusual. My neck felt swollen, and I felt more tired than usual for the week following surgery.
The second tumor was a different story. I still don't know why, but I had trouble standing up after the surgery. The thoracic surgeon said he had never seen that reaction in a patient before. Every time I stood, bad sensations would increase until I lay down again. I would feel dizzy, lightheaded, disoriented, and nauseous and get a headache. I also experienced ear effects; normal sounds seemed to pulse in intensity with each step I took, and I felt like my head was underwater. My thoughts were fuzzy, and I had trouble concentrating. I also got a lot of stomachaches. I vomited many times before I realized that my symptoms were linked to posture. I left the hospital on the fifth day, as expected. Then I spent most of my time lying on the couch, only getting up for a few minutes at a time. My symptoms didn't improve for a week. Then a nurse suggested that I try sucking in my abdominal muscles. Sucking in my gut or wearing an abdominal strap allowed me to stand for much longer without symptoms. I finally started to improve. At one month after surgery, I only had to lie down for about an hour or two spread throughout the day, without even sucking in my gut. At two months, I could remain upright all day.
A constant, low-grade headache started at five weeks after surgery. I was worried when the headache showed no sign of going away. However, it started improving after a few months and then disappeared at nine and a half months after surgery.
I didn't experience very much pain after the chest surgery, only an expanded area of numbness. That numbness unexpectedly turned to pain on the seventeenth day. The pain lasted for four days before numbness returned. I haven't felt any of the weird, neuropathic sensations in my side that I had before surgery.
Other than difficulty standing and the headache, my recovery from chest surgery went well. Breathing is much easier without the tumor, especially deep breathing. At one year after surgery, the only remaining problem is minor loss of appetite.
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 able to do everything I did before. I've started running and doing push-ups again, and I haven't lost any range of motion. My arm feels completely normal after the neck surgery. Chronic pain can be a problem after chest surgery, but I haven't experienced any.
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*Bonus content...the person who did this case study wrote a longer, more detailed account of their story and if you wish to read it, here is the link: https://schwannomacasestudy.
