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Tumors/Ostephyites/Buldging Disks/Ventral Sac flattened in 3 Places
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sadams8161 posted:
Hi all, I am hoping that maybe someone can relieve some of the worrying that I have been experiencing since my last MRI's. I have been dealing with Nuerofibromas, Meningioma's and Nuero sheith Tumors on the nerves very close to my spine for several years. I found my new MRI results to be very disturbing, but the doctors don't seem to be that concerned. I know that things are again changing because of the symptoms I have been experiencing. Muscle spasms every couple of seconds, swelling at the base of my neck in the back along with the back of my shoulders. My gate has also changed. When I walk my left foot turns out. If I try to straighten it I am very un-balanced, a lot of pain in the leg and my leg feels that I have it inordinately turned to the right.

The new MRI's show four new tumors and the thecal sac and cord are flattened at C6-7, ventral cord is also flattened at C4-5, and C5-6 with synovial sheath fluid.

These are just some on the anomalies. The neurologist does not seem to be concerned and is taking her time performing test and such. Am I stressing for nothing? Things are changing rapidly and more strange symptoms seem to be appearing every day.

Thanks for your help.
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bj1208 responded:
Hi and welcome to the support group

I don't know that much about the C-Spine area as my problems are mainly in the Lumbar area (2 fusions) but I do have Degenerative Disc Disease in the entire spine.

I will give you some sites to review - these are from trusted hospitals and have lots of info

regarding Nuerofibromas


http://neurosurgery.ucla.edu/body.cfm?id=187


regarding Meningioma


http://neurosurgery.ucla.edu/body.cfm?id=1123&ref=62&action=detail


regarding Nuero sheith Tumors


http://health.ucsd.edu/specialties/neuro/specialty-programs/peripheral-nerve-disorders/Pages/nerve-tumors.aspx


I'm hoping these are close to what your MRI's are showing - you can always do a GOOGLE search and read more on each one as there are lots of different ones listed - but please do search the ones from trusted hospitals.


I would also stress that if you feel you are not getting the help/response from your doctor it may be time to search for another one and/or at least go for a 2nd or 3rd opinion - whenever dealing with spine issues especially the items you have listed it's best to get a couple more opinions - just be sure they are Neurosurgeon Spine Specialist. And if you do have a large university hospital near you try to get in to see one of their specialists. University hospitals will have the most up to date exams and treatment options.


And if your doctor does not adhere to the changes you are feeling I would say seek another spine specialist..


I just recently had similar problems with my surgeon (surgery was 12/2014 L4-5 Fusion) and they kept focusing on the tender skin around my incision even though I told them I had 2 types of pain - the tenderness and also my regular pains deep inside that were same pains as before the surgery and now they are worse - he and his PA just were not listening and even before that I had had a test done and kept calling for the results - for 1 1/2 months no call back so in that time frame I had already set up to see another spine specialist at the university hospital near me and will see that surgeon next Wed.


Sometimes you must go with your gut feeling when it tells you something needs to be done and it's not.


Please keep us posted what you find out~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
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sadams8161 replied to bj1208's response:
Thank you so much. I am afraid I am in a state that does not offer many options for medical care. I usually go out of state. That is not an option right now. Thank you again for your help. I do plan on getting a records review when all the test results are back. I will check out the web sites and see what I can learn.

Have a great day.
 
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bj1208 replied to sadams8161's response:
Hi Sadams8161 -

Just wanted to check with you to see if there is anything new?

Please keep us posted ~~
~~ Click on my name or picture and read my story ~~
~~ Joy ~~
 
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sadams8161 replied to bj1208's response:
Thanks Joy, I don't have too much more information. I will know more late this week. I do know that the large nuerofibroma in my lumbar spine has caused nerve damage. I will need to see a neurosurgeon regarding surgery and a pain doctor to see if a pain block might work. I am trying to avoid surgery at all costs. The position of that tumor is going to make it almost impossible to remove without causing damage. So now it's the waiting game.

Thank you again for checking in with me that was so nice.

Have a great day

S.


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