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Post by chefpattyo on Mar 6, 2013 0:23:46 GMT -6
Hi peaceandlove!!! I went through the same thing.I had 3 doctors telling me not to touch the tumor in my c2-c7 cervical spine.And I was traveling to NY also to get some really great opinions from highly recommended doctors.Well I flew to New York and after the 3rd doctor said no I go see Dr.Fred Epstein @ Beth Israel and he tells me in a matter of seconds yup I can take that out no problem!! When do you want to do it next week??? I was so baffled that he was sooo confident in doing this procedure that I didn't have him do it.I just kept thinking what makes him so different that all these other doctors will not touch it and he will? Is he just cocky or is he that good?? We are talking about paralyzing me here , is it worth the risk???NOPE!!!
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Post by tamarin on May 30, 2014 17:10:13 GMT -6
Well, it's been over two years since my initial post. I had new MRI's completed in January. Per the report, "Differential diagnosis includes intradural nerve sheath tumor, meningoma and ependymoma." In addition, "There are small cystic appearing structures along the posterior left 6th rib and along the bilateral posteromedial 7th ribs". (Could be neurofibromas or schwannomas). I have since contacted Johns Hopkins and am awaiting to schedule a couple of appointments for further tests (one is genetic testing for neurofibromatosis - as recommended by my current neurosurgeon). I can say I was a bit surprised by these new findings, but I have relatively no symptoms. I've been very active recently, (training for a 15K and just ran over 10 miles one day last week, hiking the Adirondacks, biking) and I feel this is partially the result of not knowing how long I'll be able to do this. My doctor here in upstate NY said I need to start thinking about surgery for the tumor, but since it's still relatively small (10mmx9mmx9mm - though growing) and there are no real symptoms (minor tingling in a couple of toes on one foot), I thought it would be best to travel to Maryland for further evaluation. The new growths do worry me though. At this point though, I can't worry about what I can't control. We'll see what the next doctor thinks. Thanks for reading. I hope everyone is doing as well as they can be. I actively read the boards and think about you often.
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Post by lw on May 31, 2014 14:22:59 GMT -6
Hi Tamarin,
Sorry to hear this. This must have undoubtedly come as such a shock to you. However you have the right attitude - it is futile worrying about what you cannot control and the doctors are best placed to give you an accurate prognosis. I sometimes think going through the process of obtaining a diagnosis and undergoing investigations is the most stressful part of any condition due to the uncertainty. You may not necessarily have neurofibromatosis and, as you are generally doing well health-wise, the tumours may not require surgery for many years (if at all). Hopefully your next doctor will have more answers for you. I am thinking of you too! Keep your chin up and let us know how you get on.
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Post by tamarin on Oct 11, 2014 18:52:45 GMT -6
So, I just got back from Johns Hopkins and met with Dr. Belzberg and Dr. Blakely, along with a geneticist. Though, no formal diagnosis can be made, all signs point to Schwanomatosis (with a small chance of NF2). I am going to get another MRI and also need to do a urodynamics test to make sure my bladder (and nerves in the S1 region) are functioning at normal levels. Once the team at JHU get the results, they'll decide if I need the surgery now or if I can hold off. Once I have the surgery, they can test the tumor with my blood and make the formal diagnosis. I was prescribed neurontin (though I didn't ask for any meds and I'm not sure I'll even take them). I have pain every day, but it's bearable and don't want to take anything if I don't need it. That's about it. Thanks for the well wishes lw and everyone else. I've learned a lot from this site and I'm glad I can share my story with others.
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