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Schwannoma (Brachial plexus/axilla)

mnmtassano
  • By mnmtassano
  • Posted September 20, 2009 at 7:51 pm · 2 replies
  • In Help desk
  • Shared with the public
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I am a 38 year-old mother of 3, I just had my 2nd resection of a Schwannoma nerve tumor from my (r) brachial plexus/axilla in 4 years. I have seen a geneticist & my DNA tests negative for NF & I do not fit the symptoms. I have a few cafe-au-lait spots, nothing on my eyes, no freckling & no hearring issues to date. My mother & her older brother have both had 1 neurofibroma excised from their bodies. I have a history of migraines, painful joints (as a child) knee/hips, feet/hands turn blue and/or always cold, & now I occassionally feel twinges in my body. My 17 yo daughter also has a mild case of scolisosis & complains frequently of "growing pains" in her knees. Suggestions and/or ideas? Thank you!

Explore topics in this discussion:

Surgery Neurofibroma Schwannomatosis

2 replies

CindyLouWho

Were you tested for NF1 or schwannomatosis?

Also how many CALS and are they located in the same area as the tumor?

It is possible that your tumor has nothing to do with NF. These can occur sporadically in the non NF population though your family history is certainly intriguing.

It is always possible that you have segmental NF where NF isn't in all of your cells. This type of NF is very localized and does not generally show up on the genetic tests. Chances of passing NF off to offspring are greatly reduced in this scenario. Of course, that doesn't explain the family history of neurofibromas and having two family member affected seems like quite a huge coincidence. I believe that another hereditary condition called Carney complex can also occasionally involve these tumors but that doesn't sound like you either. There are some reports of neurofibromas occuring in people with Ehler Danlos which might explain the joint issues but that certainly isn't a common finding and hyperextensibility just sometimes goes with NF too. Or as I've already mentioned tumors can just occur without any underlying disorder.

A last thing to consider is that the NF test is not 100% accurate....accuracy is only 95% and that is for people who already meet criteria.

Are you seeing a good geneticist? Did the doctors have any theories?

I hope you find some answers.

Cindy

mnmtassano

Cindy~

Thank you kindly for replying. I went back & read my email from the Kaiser Geneticist that I saw this summer. It just says that my DNA tests negative for NF1, but that I do not fit the symptoms of NF1/NF2/Schwannomatosis. Segmental is a new one that I have not heard. It's amazing, but this is not very familiar to any of my doctors & this is becoming quite a learning adventure for me as well as it is for them... I am just looking for answers for myself & for my kids. It's heartbraking to tell my kids that I have another tumor & that I have to have surgery, but I would rather it be me then them.. any day! Thanks! :)

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