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Post by echo123 on May 12, 2016 9:08:21 GMT -6
Oh yeah, one last thing I forgot to mention. I have hundreds of lipomas in my arms, legs and trunk. Anyone else have combination of multiple lipomas and schwannoma?
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Post by Charity M on May 19, 2016 9:28:05 GMT -6
Hi, I just found out yesterday I have this Shwannoma and will need surgery. It's about an inch big and I'm not going to lie, I'm scared. Seeing the date on your post I'm just wondering how you are today and how long did it take after surgery to feel better?
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Post by echo123 on May 22, 2016 9:51:30 GMT -6
Hi Charity, The one thing no one ever tells you is to psych yourself into the fact that you will be pretty helpless for awhile. Even simple things like rolling over will be difficult. You didnt mention where your tumor is (mine was lumbar), so I learned to manipulate my movements by pulling myself with my arms. I'm scheduled for follow up MRI because my nerves are regenerating and I'm in pain so they wanna see what's going on. I want to encourage you to get the surgery done by a doctor you feel look about and have confidence in so you know you're in good hands. Please know it will be better. These are weird random tumors, and they don't seem to have much history on how to deal with it. Listen to your body post surgery and don't rush things and you'll be fine, just takes awhile.
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Post by Erica on Oct 27, 2016 8:44:49 GMT -6
About an hour ago my mom was diagnosed with a schwannoma on her t7. I'm currently trying to find out information on what to expect but most of what I'm reading has to do with brain schwannoma. Anyone have any insights?? My email is ericalongrma@gmail.com any help, direction, expectations on this would be MUCH appreciated!! I've found that very few people on the board have Schannoma tumors. In fact if I remember correctly I have only come across two. My name is Charity, I live in Utah and on August 13, 2004 I was diagnosed with a nerve sheath Schannoma spinal cord tumor. Once diagnosed I could track the symptoms back to fall of 1999 when I became pregnant. When I was diagnosed I had just a few days to prepare for surgery because of how compressed my spinal cord had become. The NS was shocked I was still walking. In that few days I learned a lot about this type of tumor. Schwannoma tumors are rarely cancerous. Only about 2% are. They develop from wacked out cells surrounding the nerves. In my case I was told that the tumor started on a nerve running alond one of my ribs right by the spine. I also learned that they are very slow growing. I would love to meet other people who have been diagnosed with this same type of tumor. Charity M.
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Post by Marsha J. on Nov 4, 2016 19:53:18 GMT -6
I have been diagnosed with a "likely" schwannoma at T2. It started with a stabbing pain in my shoulder and upper arm if I moved a certain way. Five months later I have a diagnosis and the pain seems to be more generalized. If I bump my shoulder or move my shoulder back the stabbing pain is very sudden and I almost have to lay on the ground. I saw a post earlier about someone having a lipoma also. I have had a large lipoma in my lower back for almost 30 years. It has never bothered me, hum, is there a link? Anyway, has anybody had this kind of pain? Does anything help? How long is out of work recovery after surgery? What type of surgeon does the surgery? My primary care doc is sending me to a ENT. That just don't make sense to me.
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Post by luke smith on Nov 22, 2016 12:18:49 GMT -6
I started noticing a shooting pain through my left glute about 6 years ago. It would get better and then gets worse again. I recently noticed some mid back pain. My primary physician orders an MRI...
I currently have 6 Schwannomas in my body that I know of. 2 are on my spine (T12, S1-S2). 1 large one in the back right side of neck. 1 in meckels cave in my brain. 1 in the arch of my right foot. and 1 near my shoulder blade on the left side of my back. I knew of the ones in my foot and near my shoulder blade but never really thought much of them. I have obviously had some of these for a very long time. Now the process begins of removing them. My neurosurgeon says to remove the one at S1-S2 first because it is causing the most pain. Then the one at T12 because it is also starting to cause pain. Then the neck and then the brain.
This has currently turned my life completely upside down. Any advice or help please reply. I am located in Tampa Florida, 36 year old active male. Having 4 major surgeries is not what i am looking forward to right now. My number is 910-688-3520 in case any has any information they would like to share with me.
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Post by Nicky S on Jan 14, 2017 9:50:53 GMT -6
Spinal schwannoma on my L2
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Post by Nicky S on Jan 14, 2017 9:56:57 GMT -6
Hi I have been recently diagnosed with a schwannoma on my L2, I've had back problems for many years going back into my teens. Am now 44 and my current symptoms are awful pins and needles in both legs, numbness to my legs and last few days I've had difficulty walking due to the heaviness and numbness. Am due to see a neuro surgeon in 2 weeks but if am honest am terrified. Am very active as a rule, gym regular used to run which did aggravate my symptoms.apparently the schwannoma was evident on my perv MRI scan 7 years ago but they never told me. I had a further scan done with contrast a few weeks ago when my symptoms were causing me awful pain and pins and needles. I've tried to go to the gym recently but ended up in agony next day. It's so frustrating being so young and normally fit and healthy to some days needing my daughter to help me up the stairs. Has anyone else had one on their L2 I would really appreciate some advice. Nicky
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yoon
New Member
Posts: 2
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Post by yoon on Jan 16, 2017 23:05:22 GMT -6
Hi there, I recently diagnosed with an extramedullary intradural cystic schwannoma in December 2016. The size of the tumor is 29 x 14 x 13 mm located on L2 and L3. I have had low back pain and SI joint pain for over 2 years. The pain was really bad at night and when I got out of the bed. I also have had upper back pain. I thought I had a mechanical back pain so I had a lot physio and chiro but didn't get better so asked for an mri. That's how I found out about my schwanoma. Since I found out that I have a spinal code tumor, I stopped doing exercise and tried to sleep on a side rather than on the back. That was very helpful in relieving my SI joint pain. Over the last couple days, I have been feeling numbness in my both legs as well as arms that comes and goes. I saw a neurosurgeon back in December but want to get a second opinion. Just wondering if you have also upper back pain as well as low back and legs?
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Post by cutiebabe36 on Jan 20, 2017 2:50:23 GMT -6
Omg..read my new post. When you said you could track your pain back to when you were 1st pregnant.. I about died. In women it has to corilate with increased growth. They said that about me too..your only 28. 2 kewi sized tumors in ur neck?? Must have been born with. I think it was super small when born. Preg kicked it into gear..they said the increased blood flow. Yeeaahhhh maybe..but what about for the years later when nursing and not prego? Growing just as fast. From 2mm to 4cm in 11 months..with external beam radiation. Highest dose possible.
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