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1) How old were you at the time of your diagnosis?
I was 23 when my first schwannoma was removed. Actual diagnosis of schwannomatosis came around 1994 when I was 28. My neurologist at Cleveland Clinic had referred me to Massachusetts General in Boston who was doing a study on schwannomatosis at the time.
At first I was diagnosed with NF1, but I did meet all the criteria.
2) Do you have any history of Schwannomas in your family?
My father has schwannomatosis. He has had multiple schwannomas removed. His first was in 1972. It was removed from under his arm, and caused permanent nerve damage to 3 of his fingers.
In 1983 he had 2 surgeries to remove schwannomas from the spinal column in the Lumbar and Cervical area.
3) Where was your Schwannoma (or schwannomas) located? And what were
the symptoms that lead to your diagnosis?
Age 28 – MRI’s revealed intradural extradedullary (arising inside the dura but outside the actual substance of the spinal cord) tumors at the L3-4 and at the T12. Also 1 tumor arising from the thoracic spinal column referred to as a dumbbell schwannoma. Decision made at the time to monitor tumors, as they were not large, and non-symptomatic.
Age 44 – MRI revealed 3 new intadural extradellary tumors at the L1-L3 L4 location. Also multiple abdominal tumors involving the iliopsoas groove, the obturator nerve, the obturator chain, the erector spinae muscle, the cauda equine and the psoas muscle.
Also, I have 3 tumors in the neck. One is about 5 cm, the other 2 are small. They are not in the spinal column, you can actually see them under the skin on my neck. We are monitoring them at this time, EMG and nerve conduction study show that the arm and hand are ok. They don’t hurt as severe as other tumors, they kind of ache. I think it is because they have room to grow. If they get bumped it feels like hitting your funny bone times ten.
My huge issue with these current tumors is not knowing what tumor is causing what pain. I have lower back pain, hip pain, thigh pain and of course the groin pain. Luckily, I do not have any neurological deficits at this time. The doctors are not sure what tumor could be causing what pain either. One of the suspect abdominal tumors would not be easy to remove.
1989: Abdominal surgery (bikini cut) to remove egg size schwannoma on back wall of abdomen. It was not symptomatic, but doctors believed it was ovarian cancer due to the location of the tumor. I remember signing the release giving them permission to remove the ovary if necessary. During the ultrasound the tumor lined up perfectly with the ovary. The surgery was successful, however the success may in part be due to the fact that I was so obnoxious. A gynecologist was scheduled to do the surgery, and my Dad and I kept insisting it should be a neurosurgeon. Even though this was my first tumor, we both had a “feeling” this was a schwannoma. They finally relented, and a neurosurgeon assisted in the surgery. It turned out that the tumor was not in the reproductive system, but on the back wall of the abdomen, and was in fact a schwannoma. There are many critical nerves in that area, so I truly believe that having the neurosurgeon present quite possibly saved a lot of nerve function. Recovery from abdominal surgery is about 8 weeks.
*** One side effect from the surgery – some 20 years later – I have been having severe pain near the incision on one side only. Pain clinic doctors believe it may be that the scar tissue has grown and trapped the illioinguinal nerve. I take Neurontin and tramadol daily for the pain, and have tried nerve blocks and RFA. I have pretty good control of the pain from the meds, but they do make me tired.
1994: Small cherry sized tumor removed from the surface area. Seat belt would rub it when driving. Performed with a local, it was really just a minor procedure.
2000: L3-4 Tumor and T12 Tumor – both Intradural extramedullary were removed using laminectomy. The neurosurgeon used one incision to reach both tumors, about 10 inch long incision. I spent 2 days in hospital. I could have gone home earlier, but I had a spinal headache, and my drive home was an hour and a half. Recovery was about 6 weeks, and was a much easier surgery than my abdominal surgery. I would consider it a successful surgery, as no deficits resulted from the surgery. I had made the decision to have them removed even though they were not symptomatic, because they had increased in size, and I wanted to get pregnant with a second child. Which I did at about 4 weeks post op.
2003: T12 dumbbell tumor removed. Tumor caused me quite a bit of pain. Elastic in bras needed to be cut so no pressure was put on my rib cage, and anything tight around the waist caused the tumor to act up. It kept me up at night quite a lot. Neurosurgeon went in through the rib cage in order to remove the tumor. It was necessary to remove a piece of one of my ribs. Surgery went well, I was home in 2 days. The pain was not immediately relieved. I walked around holding my shirt away from my skin for about 4 weeks, due to the skin being extremely sensitive and painful. After about 4 weeks, the pain subsided, and the surgery was a huge success. The area around the incision always feels like a bruise, and I have just started to have some pains similar to when I had the tumor, but nothing as severe as before yet.
I am so lucky, because I have a fabulous neurosurgeon, Dr. Kalfas, at the Cleveland Clinic. I have my annual MRI scans, and he reviews them with me. Once we go over them, he will say, “OK, you know the drill, if the pain becomes too much, or you develop any new symptoms, call us up and we will schedule a surgery”. I never have any issues with communication problems with my surgeon.
I will say this. When I called to schedule my yearly appointment with my neurosurgeon his office told me that he does not operate on the abdomen, only the spine. So I had an unnecessary appointment with a general surgeon, who told me he would not touch my tumors. Consequently Dr. Kalfas, my neurosurgeon told me he would operate on any of my schwannomas. And, if need be, he would have another specialist assist. For example, if I had the tumors in my neck removed, Dr. Kalfas would remove them, but he would have a vascular surgeon assist.
Dealing with my schwannomas feels like a tight rope walk most of the time. I am the one left making the decision. Should I have my spinal tumors removed now before they grow larger and while I am still young and fairly healthy (even though they are not causing any deficit). Because they could stay small for a very long time. Or, do I wait for a symptom, ie, bladder, bowel, trouble walking? And then the surgery could be more complicated. These are very critical questions, but they are questions I end up having to ask myself. The doctor just cannot answer them for me. He does his best to counsel and answer what he can, but these tumors are just not cut an dry.
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)
My
recoveries from my surgeries were fairly easy.
I believe I am very fortunate that my Dad paved the way for me. It was not hard for me to receive a diagnosis
of schwannomatosis. Once I had the
initial tumor removed, and with familial history, it was really a no
brainer. Early detection and early
removal of the tumors (if necessary) makes recovery much easier.
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)
Yes,
I can do most everything I did before. I
used to run a bit, and now I don’t because of thigh, hip and knee pain. Again, I am not sure if my issues are tumor
related or not. I cannot do any
core/abdominal exercises, because it angers the dreaded illionguinal
nerve. It is more of a pain prevention
measure. My body is fully capable of
doing the abdominal exercises.
