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  • What next? spinal cyst.....

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    Old 04-21-2007, 10:43 AM   #1
    TheMamaLisa
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    What next? spinal cyst.....

    I have been having alot of back issues for along time. It started in 2004 and I ended up Jan 2005 with a mircodiskectomy and laminectomy on L5-S1. A month later my neck started hurting and symptoms progressed in my arms and neck for about 9 months and then an MRI was ordered finding moderate to severe stenosis on 3 levels in my neck also backwards curve of my spine. I saw a surgeon and he said i will eventually need surgery but not at that time. My symptoms progressed as well as low back symptoms returned and so I had another MRI. It came back as worsening stenosis in my neck and I was referred for an SEP to check for myelopathy. I had asked if there were any tumors or anything else and he said no. I went to my SEP 2 months later and the specialist focused mainly on my low back and I explained it did hurt but my neck was my primary concern and he proceeded to ask well what about the cyst on my lumbar spine. I asked do you have the right chart? What are you talking about? He ordered an sep of both lower and upper body and left not answering any questions regarding the cyst I had just found out about. In testing my low back they were getting some positive feedback from the "mass" on my lumbar spine and thet redid the test 4 times to make sure they got the same recording and of course they did. I looked at my mri and now i definatly can see the cyst the dr was speaking about. I dont understand why I wasnt told b4 or what im supposed to think of this. I dont get to follow up again with my dr for another 3 weeks as I am waiting for another MRI/MRA of my brain. Anyone have experience or knowledge of what may cause a cyst and what I can expect as far as outcome/treatment? Thanks

     
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    Old 04-21-2007, 05:40 PM   #2
    feelbad
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    Re: What next? spinal cyst.....

    did they define this 'cyst' in any way such as a vascular malformation or anything more specific?i had,still partially have whats called a cavernous hemangioma that was in my c spine right between the c 7 and t 1 area in the actual cord.this is just one of the vascular malformations that are possible to have within or on the cord.is this 'on' or 'in' the cord itself or someplace else in there?

    I really cannot believe that other doc not actually saying a word about this to you.what an a**.this is the one big reason i ALWAYS get my own copies of any test results myself,so I can read thru them too.so many docs(mostly the so called specialists) just do not actually tell you everything that is in any given report,only what they 'feel' is pertinent to your particular problem at hand.its really a pretty sick thing to do to patients but it happens all the time.the really stupid thing here tho is that this area was what the doc was actually seeing you for??am i right?i think i would have a big sit down chat with that other doc about this,honestly,i would want some answers as to why in gods name he decided to keep this very important,vital info all to himself?he DOES most definitely have some real explaining to do for you.i would demand answers.i have had info witheld from me but nothing like what you are experiencing.heck,depending on just what this mass turns out to be and the possible ramifications to you,this could be a very real malpractice/negligence issue at some point.hopefully it wont be an issue at all tho.

    I really am sorry for what you are having to deal with.hopefully this is just a little glob of tissue and nothing more.what this actually turns out to be would really be what would dictate any possible surgical resection or any treatment options.if its just tissue and its not bothering anything,you may not have to really DO anything with it.that would be the best case scenerio.but you DO really need to address this with that other doc.this is really sick.I wish you lots of luck and hope this is just a nothing.please keep me posted on just what you actually find out,K? hang in there TML,Marcia
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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 04-21-2007, 07:06 PM   #3
    warpman
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    Re: What next? spinal cyst.....

    Per the posting rules do not direct members to do searches outside of the forums.

    Last edited by HBMod07; 04-25-2007 at 12:11 PM.

     
    Old 04-21-2007, 07:43 PM   #4
    TheMamaLisa
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    Re: What next? spinal cyst.....

    Thanks for the repiles... I have been through hell with doctors and my back problems. I have been pushed off so many times and this is just the icing on the cake. They been putting off surgery on my neck for a while now hoping it will spontaneously heal itself i guess.... I dont understand this i suppose it has somthing to do with me being on medicaid and insurance not wanting to pay unless they truly have to. No excuse not to tell me this information though. Actually the sep was for my neck and he kept asking about my lumbar spine and when I told him i was there for my neck he asked me what about the cyst in my low back... All that was said to me and as i asked ?'s he proceeded to talk to the techs and ignore me then he left. Im very disappointed and scared. Im hoping it is a nothing, and more then likely probly is. But this wondering and waiting is very stressful. I will keep you posted Thanks again

     
    Old 04-22-2007, 04:05 PM   #5
    Lilacs&Lillies
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    Re: What next? spinal cyst.....

    I'm sorry you weren't given all the information. As mentioned by another member, maybe getting your records will help. I have 3 large spinal cord cysts. Mine are in the sacral area and are presumed to be "Tarlov Cysts."
    Several years ago I went to neurologist with sciatica and intense pressure in the sacrum. The cysts corresponded exactly where my problems originated from. She felt they needed to be removed and sent me to NS.

    I have no idea if that's maybe what you have or not, but I do know that many doctors feel that Tarlov cysts are thought to be incidental findings, rather than a cause for a problem. Mine are so large they are erroding the bone. I had one surgical consult for them but was told there would be no guarantee they wouldn't fill right back up again, or that I wouldn't be left with a spinal fluid leak. (That NS said it's like trying to sew wet toilet paper.)

    I still have chronic pain, but I am not willing to risk the surgery that may not even help. I was told if I begin to lose bowel or bladder control, then there is no choice, but for now I'm living with them.

    I hope you find the answers and relief you are looking for.
    Take care.

     
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