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Thread: Spinal Stroke?

  1. #11
    Junior Member
    Join Date
    Feb 2009
    Moreno Valley, CA
    The day before yesterday, her nuerologist went on vacation. That has been a real blessing because his replacement has been awesome. He has been trying to explain things to us and doesn't mind questions, he welcomes them. He called in a infectious disease doctor and a Hematologist. She does have transverse myelitis. He didn't say if her brain stem was involved but when he showed us the MRI it sure looked like it was. She basically cannot feel anything below her chin/jawline. She can move her lips and trys to mouth out words. She can raise her eyebrows and blink her eyes. She can stick out her tongue and sucks water out of her toothette sponge. She really can't move her head anymore, but at fist she could nod a little and turn it a bit to either side. Her herpes infection is resolving. She has been spiking some high fevers but they went down yesterday and have been hovering about 100 degrees. They delayed putting in the trach because of the fevers and herpes. The new nuero;ogist is planning on doing another spinal tap. He said that if she had Guillian-Barre her MRI would look normal and she has swelling around the cord. I think the level is C-2 or C-3 although I forgot to ask. He said something about doing an angiogram to check for a spinal stroke. I have printed out all of your responces and I'm taking them to the hospital today so I can remember all those questions. Thanks so much to all of you for taking the time to review her case and give me some ideas and suggestions. I tend to shut down mentally with all this stress and forget to ask the key questions. megankj

  2. #12
    Senior Member
    Join Date
    Jul 2007
    Megan,this is a devastating injury and I truly hope as the swelling goes down,she recovers some more function.Don't forget to take time for yourself and prepare yourself for any reactions she has when this really hits her.She may be in denial for some time,but reality will set in sooner or later.

    Start checking into rehab settings that will further her independence(of course for when her health is under control first),even @ her level she will need to be able to do as much as she can.I'm a little lower ,but there a some here at her level that I hope chime in to say what she /you need to know.Nurse KLD can offer advice on the proper rehab in your area.

    I hope you have other family/friends to help out,you need them.Best wishes to you and your daughter.

  3. #13
    Junior Member
    Join Date
    Feb 2009
    Moreno Valley, CA
    OK what I ment to say was the neurologist said that "you can say she has transverse mylities" I think he was saying it was like it's a sub Category.

  4. #14

    This is very good news to hear that a new neurologist is involved. It sounds like they are doing a much better job, and are thinking through this much more carefully. Thank goodness!

    Transverse myelitis is really just a descriptive term. It means there is evidence of "inflammation" that crosses a portion of the spinal cord, and causes problems with movement and feeling below that level of the spinal cord. But it doesn't tell you why the cord became inflammed. Basically, her cord is "swollen" right now and what they need to figure out is why it is swollen and how to treat it. Her cord is swollen at a very high level, and from what you are describing it progressed very rapidly.

    I am glad to hear that he is doing another spinal tap - they will hopefully check the fluid for many types of infections that can be associated with swelling of the spinal cord. If she has an infection - and this includes herpes in the spinal fluid - then they will treat her aggressively for that. Sometimes they will do additional tests (MRI brain, CT scan of other parts of the body, blood tests for diseases associated with inflammation) to try to get as much information as possible as to why this happened. If they are concerned it is a transverse myelitis there are several treatments that they should initiate soon, if they haven't already (intravenous steroids, and then if improvement doesn't happen, to think of more aggressive treatments such as plasmapheresis and intravenous immunoglobulin - or IVIg). It is also very thorough of him to think more carefully about what could have caused a stroke, or if there is a blood vessel problem in the spinal cord, because it is still not clear what the diagnosis is. Because often it is very hard to tell from an MRI picture alone if it is inflammation/infection/stroke of the spinal cord. All of the information together - the history, the patient's examination, the MRI, and the tests (spinal tap, blood tests) help you to form your diagnosis. It can be very frustrating for the family when you can't get to a diagnosis more quickly. But it is even more frustrating if the doctor isn't going to try to get a diagnosis!

    Keep pushing the new doctor to be as aggressive as possible, and be sure to hang onto this doctor!

  5. #15
    Sounds like a grat plan! Make sure its done before the other doctor returns! Of course, you could ask to switch doctors if needed.


  6. #16
    Hi MeganKJ:

    I am very sorry for this tragic event in your daughter’s life. Many of the replies before mine are very knowledgeable. I just wanted to share with you that I had a Spinal Cord Stroke when I was 28. I was a very healthy, athletic female. Your daughter’s onset is very similar to mine. I woke up at 7am with severe neck and shoulder paid. My arms and hands had numbness and tingling. I went to the hospital. Walked in, but within 2 hours I lost B&B and was unable to walk. I was placed on a respirator. My family hoped it was Guillian-Barre, but it was not. Final diagnosis after 3 MRIs, 2 spinal taps, and many other tests was Spinal Cord Stroke; Infarction. They looked behind my heart for an infection, but found none. In the end, all they could find was the strep throat virus in my blood and they concluded the cell was unable to pass through the small vein feedings the spin and cut off blood flow.

    I hope spinal shock subsides and your daughter experiences significant recovery.

  7. #17
    Junior Member
    Join Date
    Feb 2009
    Moreno Valley, CA
    Ok first I want to thank ALL of you form the bottom of my heart! You have been a wonderful source of information and my family and I are truly blessed to have found this god sent website.
    I am going to try my best to explain where Erin is at as of now.
    1st today Erin was seen by yet another neurologist who said that she defiantly had a spinal stroke. All of her ct scans prove it was a stroke.
    Yet at the same time the infection doctor cannot find a source of infection that they thought was the cause of her high temperature. Now they are going to look for an auto immune.
    The neurologist said no to the plasma apheresis/ Ivig because that is only to treat auto immune (not for the swelling that is evident in her ct scans.) Also I asked him if her brain steam is involved and he said he thinks maybe the very bottom of her brain steam was affected. Also I asked him what he thinks her recovery will be and he said “to be honest I think this is it, a lot of nerve damage is already evident on the ct’s” I just know this can’t be it. Please tell me anything you can think of. The neurologist said the best medicine for her is rehab rehab rehab, this I know must be true because you all have stated it as well.
    Also just some more of Erin as of right now (3-02)
    Her WBC went down from 13,000 to 8,000 now it’s at 5,500. To me that sounds like she is fighting an infection, but they said they can’t find it?? I just don’t understand.
    Her urine is almost black and has A LOT of sediment. Her IC Doctor said it could be blood (because she’s on blood thinners) also she’s on a lot of antibiotics and this sometimes causes the urine to turn dark. Is this true or could that be a red flag for something else.
    He urine cultures have all come back negative and her kidney function is fine.
    They also did a blood clotting test and she is a level 5 (??) and she has a history (she stopped completely about 3 years ago) of slight smoking. Also she took BC but has been off for roughly 2 years.
    Is plasma apheresis expensive is that why they keep saying no. They said that it’s not going to help her swelling and it would just be useless and painful for her.
    O yeah and now they are saying that they are not going to do the 2nd spinal tap because of possible brain herniation. That’s the reason they don’t want to do another Spinal Tap. Is this possible?
    I really do want what’s best for my daughter but I don’t want to give up, like I feel her doctors might have. I know that they are trying to do all they can but I don’t think its enough.

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