neuroblastoma, schwannoma

[justjab]

I am a 47 year old female.  In 1988, I had an encapsulated neuroblastoma removed from the tail of my pancreas.  I also had my spleen removed because the tumor had crushed it.  I had 6 months of chemo, and 23 radiation treatments.  At the time the tumor was found, there was also noted that there was a mass in the soft tissue of my right side.  Two years ago, my feet started burning whenever I put closed shoes on.  I went to my doctor, and he sent me to a neurologist.  He sent me for 4 MRI and it was noted that the tumor in my right side had doubled in size since 1988.  Because of my history, I was then sent to my Oncologist. He said that we need to find out what kind of tumor it was, but nobody in Martin County wanted to do the operation.  I was sent to Jackson Memorial, and the tumor was removed.  It was a Schwannoma that was wrapped around my S-1 nerve.  It came off without damage to the nerve.  However, this did not stop my pain.
For two years, I have not been able to wear shoes, and if I take a bath or shower in warm water, I am miserable.  Besides the buring, sometimes it feels like someone has crushed all the bones in front of my feet.  My family doctor put me on tegratol, but I could not function on that medication.  She has me on 10 mg of Prednisone, and I have been taking Darvocet for two years.  I was only taking 50mg of Darvocet in the morning, and 50mg of Darvocet
but I was never out of pain, it just kept it under control as long as I didn't do much of anything.  She also started me on Prozac, and the Prozac has kept me from killing myself.  When I go to bed at night, the pain is unbearable.  Two years ago, I saw so many doctors, that for the last two years, I haven't done anything about the pain.  It is getting to the point that I don't have a life.  By researching the internet, the two condition that stand out to me are Erythromelalgia, and Neurofibromatosis.  I have always had moles, and skin tags, but in the last year, I have gotten a bunch of little brown spots on my neck, arms, and upper body.  I also have a large brown patch growing in front of my right ear.  My mother died last December, and her major complaint was burning feet, but her death was "undetermined".  My doctor has suggested that I got to Mayo Clinic, or Cleveland Clinic.  I am so tired of going to the doctor, and not finding out what is wrong with me.  Any suggestions?

[CCF-Neuro-M.D.-RPS]

Dear justjab:

I would suggest going to the doctor.  What did the MRI of the spine show?  Darvocet is addicting, maybe another type of medication such as neurontin might be a better choice for neuropathic pain.  It doesn't sound like you have neurofibromatosis as the cafe au lait spots are there initially from birth, you do not describe axillary freckling, iris changes, etc.  I am not sure what is causing you pain, but certainly one needs to investigate the possibilities and not just treat the symptoms.  I would put some effort into trying and find the etiology, and would put radiation right up there on the top of the list.  Go and see someone and find the cause of your pain.  You are correct and live is not meant to be lived in pain.

Sincerely,

CCF Neuro MD

[justjab]

The MRI of the lumbar spine before the tumor was removed read as follows.  The lumbar vertebral bodies are normal height and alignment, with moderate disk desiccation at L4-5 and L5-S1.  Just to the right of the sacrum anteriorly there is an ovoid soft tissue mass which shows very mild enhancement.  This measures at least 4.5 x 4.0 cm, but a good transverese dimension was not obtained as the examination was not tailored to intrapelvic structures.  The signal characteristics are certainly compatible with a mass lesion, and neuroblastoma would be a possibility.  This lesion is certainly in a location to affect the right sacral nerve roots, and a portion of the lumbar plexus, and could lead to symptoms of sciatica.  Additionally, however, the degenerative changes of lumber spine, particulary at L4-5 with an annular tear just to the right of midline and a small amount of extruded disk material could lead to pain.  There is some thicking of the left L5 nerve root as they pass this level as well whick suggests they may be edematous from compression.  There is also a right paramedian disk herniation at L5-S1, although small, which displacess the S1 nerve root posteriorly and may affect symptoms relatable to that distribution.

One thing that I forgot to mention is that for the last two months, I have had pain in my tailbone whenever I sit down.  The pain doesn't last, but is just very sharp when I first sit down.
I have had back pain for years before the burning in my feet started.   Another thing that I have questions about, is there a possibility that my first tumor was a schwannoma, and not a neuroblastoma?  Maybe 13 years ago, they didn't have the equipment to tell the difference.  What kind of doctor should I see.  My family doctor says she doesn't know what kind of doctor to send me to, but if I went to Mayo or Cleveland, I would be seen by about 5 different kinds of doctors at one time and I wouldn't have to go from doctor to doctor to find out what my problem is.  Is this true?