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Thread: Help please, my mother has a 9 level syrinx

  1. #1

    Help please, my mother has a 9 level syrinx

    My mother has been losing her ability to walk rather quickly (over the past 5 months). She's also starting to have bladder control issues too. She had MRI images done and they found a 9 level syrinx from T6 to L2. She may have a cervical spine syrinx too. They just did the cervical spine MRI yesterday. I have those images and can see what looks like the begining of a syrinx there too - but I'm not a medical professional so I'm not positive if that's what I'm seeing.

    She is going to Johns Hopkins this weekend to see a spine specialist Neurosurgeon there. He will provide consultation and advise if she should come back for a procedure or surgery. That will be her second opinion. Her first opinion was a Neurosurgeon with a great reputation who openly admitted that he did not feel comfortable handling a syrinx of her size.

    My mother is at the point of needing care with every day living. She wants to remain at home. She has ChampVA and Medicare insurance and we applied for Home Health assistance through the VA but have to wait on their response.

    Can somebody tell me if I should be applying for anything else for her? I don't know if she'll need to modify her home for a wheelchair so I can't really apply for that. I'm not sure if there's other programs that assist with funding Home Health care for her. Any advice would be appreciated on what I should be doing at this stage in her illness.

  2. #2
    Is she a Veteran? Is she getting care through a VA SCI Center?

    The two leading centers for syringomyelia surgical treatment in the USA are at the University of Miami (Miami Project) and Craig Hospital in Denver. I know that the VA has paid fee-basis for surgery for eligible SCI Veterans at both places.

    (KLD)

  3. #3
    My deceased father was a disabled vet so my mother has VA benefits. We are in NJ.
    I'm adding a photo of her L/T-spine syrinx (it's between the red arrows)

  4. #4
    Try to get her to one of the two centers mentioned above. These are the experts. Do a search under the term "syrinx" here on our forums to find others who have been through this.

    (KLD)

  5. #5
    Quote Originally Posted by SCI-Nurse View Post
    Is she a Veteran? Is she getting care through a VA SCI Center?

    The two leading centers for syringomyelia surgical treatment in the USA are at the University of Miami (Miami Project) and Craig Hospital in Denver. I know that the VA has paid fee-basis for surgery for eligible SCI Veterans at both places.

    (KLD)
    She isn't getting care through a VA SCI Center. Is there an advantage to doing that vs going to Hopkins which is the top US Neurosurgical hospital in the nation?

  6. #6
    I understand that. Hopkins is fine, but if you want the top surgeons, with the most experience, you are talking about Craig and Miami.

    (KLD)

  7. #7
    Quote Originally Posted by SCI-Nurse View Post
    I understand that. Hopkins is fine, but if you want the top surgeons, with the most experience, you are talking about Craig and Miami.

    (KLD)
    Really? They are the top? I want her to see the top doctors and that's why we chose Hopkins - based on their reputation. If you think these other doctors are better, I am definately interestd in learning more about them. I want the best care for my mom. And thank you very much for your help - it's appreciated.

  8. #8
    Quote Originally Posted by smashms View Post
    KLD listen to the OP yet again she is going to hopkins!!
    I'm not sure what you mean by this??

  9. #9
    Quote Originally Posted by CAS1 View Post
    I'm not sure what you mean by this??
    OP = original poster. That is you

  10. #10
    Quote Originally Posted by t8burst View Post
    OP = original poster. That is you
    Oh, okay, thanks.

    Is there any reason we should avoid Hopkins? It's a lot closer to us than Denver or Miami. We can drive to Hopkins but would have to fly to the other 2 places.

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