My husband has written a rather long edition of his schwannoma story which I'll attempt to attach. He is doing so well after surgery by Dr Netterville only 10 days ago! My daughter Caroline Newman Stallingsfound this great Facebook group for which we are so thankful. And, we are of course, appreciative to each of you for sharing your stories. We benefitted in so many ways from your postings. Dessie Frier Newman
From my husband Robert:
My schwannoma was discovered as a result of an MRI for a neck injury following an auto accident three years ago. This MRI showed that my thyroid was enlarged, and I had a mass on the side of my neck which was first diagnosed to be metastasized thyroid cancer. It took several weeks of tests for my local medical center to determine that I had a schwannoma rather than thyroid cancer. My enlarged thyroid was removed, and the schwannoma was monitored by annual MRIs. The thyroid turned out to be non-malignant.
The schwannoma did not grow for the first two years, and I had zero symptoms from it. The third year it grew about 1 centimeter in length, and the local surgeon I had been seeing explained that I should have it resected. He had already explained all the issues I could have after the resection including speech, aspiration/swallowing, eye pupil, drooping eyelid, and so on. He also explained how speech and swallowing could be improved with additional surgery. All of this sounded pretty bad to me since I was still having absolutely no symptoms, and I felt fine.
However, the situation had become a big issue to me, and I felt I needed to go forward with surgery to finally get past the subject. I knew I may look back after surgery, and feel it would have been better to wait a few more years. From the MRI it was clear that my jugular vein was almost completely pinched off and my cardioid artery was displaced by the tumor. Even though this looked bad, my surgeon at the time explained that since we have two jugular veins, that one in working order is enough. The bottom line was that I reluctantly made the decision to proceed.
Next, we met with doctors at three major southeastern university medical centers with Vanderbilt being the last. At the first two centers I was told that it could not be determined which nerve the schwannoma was on – Vegas or sympathetic until my neck was opened up.
When we met with Dr. Netterville at Vanderbilt he first explained that by seeing the direction of movement of my jugular vein and cardioid artery in my MRI, he could determine that my schwannoma was on my sympathetic nerve. This immediately showed me that Dr. Netterville knows more about this condition than any of the other places I had been. Dr. Sunshine Dwojak is a Fellow studying under Dr. Netterville, and she was excellent also. We were very positively impressed with both. Dr. Netterville not only takes an interest in the medical issue at hand, but he also takes sincere interest in the person he is treating. Only at the visit with Dr. Netterville was there any discussion of saving the nerve. The other two medical centers do not even discuss this approach. This first meeting was positive in every respect. I made the decision to proceed with the surgery in about three weeks.
Vanderbilt is a 10 hour drive from my home, and this presented another difficult part of the decision for me. My wife would be with me, but it was not practical for my children with their careers and their own young kids, to make the trip. To me, getting in the car and driving off to Nashville to have surgery was not easy, especially since I did not have any symptoms from my tumor, and there was the possibility of having problems or deficits to face after the surgery.
I was quite nervous about it all, but we forged ahead, and I have to say that the comfort and caring that I received from Dr. Netterville and Dr. Sunshine Dwojak just before being wheeled to the operating room, was the only reason I did not stand up and walk out. They were both wonderful.
The next thing I remember was waking up in Intensive Care, and I could talk, I could swallow, I could see just fine, and everything seemed to be working just right! I was ecstatic.
I think the most important factor of all was that Dr. Netterville said that my schwannoma was on my sympathetic nerve, and he was 100% correct. In my non-medical opinion the enucleation must have saved the nerve because I have no deficits from the surgery. Dr. Netterville explained that I could have first bite syndrome two to three weeks after surgery, but after one week – so far so good.
The bottom line is that I went to a lot of extra trouble to have this done by Dr. Netterville, and result speaks for itself. I made the right decision.
I would like to mention that Dr. Sunshine Dwojak explained that her Fellowship is finished, I think in May, and then she is moving to the Northwest (maybe Oregon) where she will be a surgeon. I would not hesitate to have her do the same surgery if someone on the West Coast needs this type of treatment, but of course, confirm everything with her to make sure I am right about her future location and her practice.
If it would be helpful to anyone to talk to me by telephone I am happy to do it. Just let my wife know on this Facebook Site, and I will arrange the call.
Robert