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    Spinal Stroke?

    My 32 year old daughter has just been tentatively diagnosed with spinal stroke. It started last Sat. morning. She woke up at about 7 with complaints of severe neck and shoulder pain. She also had numbness and tingling in her arms and hands. When she was in the ER they kept saying she was having an anxiety attack. Even when she went into respiratory arrest they said it was because she was hyperventilating. The second time she went into respiratory arrest they put her on a ventilator. She became incontinent of both her bowels and bladder and totally paralyzed by noon. She is in ICU at another hospital with no change in her condition except for a very high fever yesterday. She can only communicate by blinking her eyes. We were hoping that she had Guillian-Barre Syndrome, but the spinal tap was completely normal. She wants to get up in a chair but her nurses said it's way too early. Everything I've read on spinal traumas says quickly starting rehab is key to improvement. She has Medi-cal insurance. Is there any hope of her getting into a good rehab?

    #2
    MeganKJ, welcome to CareCure. As we always say, we are glad you found us, but sorry you had to.

    Since your profile does not mention your location, I assume that you are in California since you mentioned Medi-Cal. Where is she hospitalized now?

    Medi-Cal does pay for acute SCI rehab, so it will be critical to get her into an appropriate rehab program as soon as she is medically stable. In northern CA the best place for rehab is Santa Clara Valley Medical Center's SCI rehab program in San Jose. In southern CA, it would be either Rancho Los Amigos in Downey or Casa Colina in Pomona. All 3 take Medi-Cal patients.

    First they must determine if this is actually a stroke, and not transverse myelitis or Guillian Barre or a spinal cord abscess. If she is able to come off the ventilator, then that usually is done before rehab as well. Have they told you a spinal cord injury level yet?

    Can she move anything right now (shoulders, elbows)?

    Even if she is in the ICU, she should be getting therapy (OT and PT) now to help maintain her range of motion and any strength she has. She should get out of bed as soon as the doctors say it is safe, but only on a special pressure reducing wheelchair cushion, and should not stay up for long without full weight shifts (the PT will know about this). It is also critical right now that everything be done to prevent pressure ulcers. She should be on a special low air loss (LAL) pressure reducing mattress, and religiously turned at least every 2 hours, with skin inspection done at least every 8 hours. You should learn how to do this with the nurses.

    Is she getting nutrition other than just IV solutions? She needs to be getting either tube feedings or TPN by now as muscle wasting from lack of appropriate nutrition will make it harder to wean from the ventilator and put her much more at risk for infections and skin breakdown.

    The fevers are most likely pulmonary right now, so it will be critical that her lungs are kept clear and that you learn to help her cough manually. Have they talked about a tracheotomy instead of an ET tube? This should not be delayed if she does not appear to be able to be weaned very soon.

    I would encourage you to download and read, and share with her team this booklet:
    http://www.pva.org/site/News2?page=NewsArticle&id=8407

    Please come back, ask more questions, and let us know how she is progressing. We can help you.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      I'm so sorry to hear this terrible story. It's great that you have found this site to ask some questions. It will help a lot.

      KLD has excellent advice. Pay particularly close attention to her recommendations for the type of hospital bed your daughter needs, and that she must be turned every two hours to make sure she doesn't develop pressure sores. So so important.

      Equally important is trying to be sure that the diagnosis is correct, because that could certainly impact how she should be treated as well as her prognosis for the future. I hope that there is a very good neurology team watching your daughter closely - every day - and doing all of the tests required. They should explain to you very clearly what they think is going on, and how they make their conclusions.

      First, a normal spinal tap does NOT rule out Guillain-Barre Syndrome (GBS). A significant percentage of patients with GBS have a normal spinal tap for the first week or two after their symptoms begin -- and a small number always have a normal spinal tap. She should have a repeat lumbar puncture in the next week, if the doctors think that her story could be consistent at all with GBS. She should also have a test/procedure called a nerve conduction study done by a neurologist experienced in this, because over time this study will show abnormalities in GBS.

      Also, once she is stable she should have an MRI of her spine, with and without contrast. You can get an MRI if you are on the respirator. If this is done on a high quality MRI scanner, and done correctly to look for signs of spinal cord stroke and GBS vs transverse myelitis vs. ?other causes, it could be useful.

      Although her story could be consistent with a stroke, these are quite rare (especially in a young woman), so if they are strongly leaning towards that you should ask them WHY she had this. Again, because she may need a specific treatment for whatever caused this stroke, to make sure she doesn't develop more complications in the future.

      Hang in there, and keep fighting for your daughter.

      Comment


        #4
        Thank you so very much for all this useful information, I am definitely going to print out and read the pamphlet to her.
        She is hospitalized at Kaiser in Fontana Ca. I am going to look into Casa Colima because I to have only heard good things about and it is a lot closer then Rancho. So I am pleased to hear that they take Medi-Cal.
        You were right the doctor this morning did confirm that she dose have a slight case of pneumonia and that was most likely the cause of her high fever. Exactly one week into this she still cannot move anything below her neck.
        We asked her her pain lever today and surprisingly she said it was ZERO, I read in some research that spinal strokes cause server pain. Is this true?
        The hospital she is at is pretty good at turning her every 2 hours and she begins PT tomorrow. Yes she is on Tube feeding.
        They think they are going to give her a Trach sometime next week. But will she be able to talk?? She mouths words to us now and is very coherent. it would be nice to be able to understand her, but at the same time we feel like this is the doctors way of giving up.
        Are we wrong to think this?
        She refuses to take morphine because she says it interrupts her breathing even though she is on a vent she feels SOB, is this a good sign she feels this. Also when they put her on a cooling blanket at 40 degrees she said she feels a little cool.. Is that good that she’s feeling that? Or could it be psychological?
        She likes us to move her arms around and often requests it, is that a good sign. She said she really doesn’t feel bad but she does feel sore.
        Again Thank You so MUCH!!

        hlh- Thank you I will use every bit of advice we get from everyone. As bad as it sounds we really want it to be Guillian Barre because then we know it can be reversed, and we would know what to expect.
        Thanks to your advice I am going to suggest another spinal tap (sometime next week) and I am also going to suggest the Nerve conduction study to be done ASAP. I just hope they will do it.
        She already had an MRI and all it showed was swelling around her cervical spine, which the doctor said it wasn’t necessarily a spinal stroke but thats what he feels it is. He said he is still standing by his diagnoses so we feel as of right now we have to treat her accordingly. Any suggestions?
        We did ask the Dr. why she had a stroke and he told us no one really knows for spinal strokes. Again Thank you so much, this is a terrible time but this is helping in so many ways. If you think of ANYTHING please don’t hold back. No rock will be left unturned.

        Comment


          #5
          It is important to have the trach if she will need ventilation much longer. An ET tube is much more likely to damage the trachea and also cause serious sinus infections than a trach. If she can tolerate having the cuff on the trach deflated, she can talk with a Passey-Muir valve for short periods, but it is more likely this would happen in rehab than in the ICU.

          Please ask them her actual level of SCI. This is important for prognosis.

          Learn how to properly move her arms and legs (this is called range of motion or ROM exercise) from the PT and OT. It is possible to do damage to paralyzed limbs if it is not done correctly, but doing it right more often is good for her right now.

          Most, but not all people with GBS do get better, but it can take a very long time. Are they sure this is not transverse myelitis?

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

          Comment


            #6
            She is supposed to have the trach done today. She is still spiking high temps and has herpes simplex outside and inside her mouth. She is getting Cipro IV for the past few days and yesterday they started her on Vancomycin, which they are saying is for her pnuemonia but I'm worried because the lady in the next bed has a massive incisional infection and I heard some nurses saying she had MRSA. I'm worried my daughter picked up MRSA from her because that's the only thing I thought Vancomycin treated. Anyway I read somewhere that a herpes infection can be a trigger for Guillian-Barre and they said the anti-viral meds should be started ASAP. The doctor said the side effects for Acylovir could be severe, but I told him my family gets horrible herpes simplex infections and no of us ever had any bad effect. He said that it wasn't available in IV form but did order the pills to be crushed up and administer thru her nasal gastric tube. Is it ok to risk putting in the trach with the fevers and cold sores? Anyway, I feel like the doctors are getting fed up with me. The neurologist keeps telling me that it is a spinal stroke and I should just accept it. He hadn't even visited my daughter since last Thursday and asked why I was so upset about it, because his "office is only 400 feet away". I don't think he even thinks about her case until we have him paged. The intensive care doc is nice but very frustrated with us because we ask him all the questions and he is not her primary care physician. My sister knows a patient advocant and I think I'll call her tomorrow, but I don't want to piss off these docs anymore than I already have. Oh well, thanks for your help and any suggestions you may have, will be greatly appreciated.

            Comment


              #7
              What did the MRI show? Why did she have the spinal stroke? Whati s the cause? Treatment?
              A spinal stroke is not real common and the cause dictates the treatment and I would want to be sure she didn't have another one also.
              CWO.
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


                #8
                Originally posted by MeganKJ View Post

                hlh- Thank you I will use every bit of advice we get from everyone. As bad as it sounds we really want it to be Guillian Barre because then we know it can be reversed, and we would know what to expect.
                Thanks to your advice I am going to suggest another spinal tap (sometime next week) and I am also going to suggest the Nerve conduction study to be done ASAP. I just hope they will do it.
                She already had an MRI and all it showed was swelling around her cervical spine, which the doctor said it wasn’t necessarily a spinal stroke but thats what he feels it is. He said he is still standing by his diagnoses so we feel as of right now we have to treat her accordingly. Any suggestions?
                We did ask the Dr. why she had a stroke and he told us no one really knows for spinal strokes. Again Thank you so much, this is a terrible time but this is helping in so many ways. If you think of ANYTHING please don’t hold back. No rock will be left unturned.
                I am so sorry that this is such a scary, and frustrating time for you. I really admire your persistence in trying to help your daughter and understand what is happening. It pains me to hear that the doctors are not being more thoughtful, or understanding of your needs. Shouldn't be that way.... Perhaps you should speak with them (maybe ask your favorite nurse/doctor that you interact with) about how to best communicate, so that everyone's interests are met. Maybe a certain time of day each day the resident could check in with you.... or the neurologist could let the nurse know when he plans to round so that you don't have to keep paging him. If you have other family members around you, ask one of them to speak up one day and ask the questions (prepare them ahead of time...) so that you that you can have additional voices pushing for answers.

                Your additional information is helpful. The MRI of the spine is more concerning for either transverse myelitis ("inflammation" of the spinal cord) or a stroke, rather then GBS.

                http://www.ninds.nih.gov/disorders/t...semyelitis.htm

                (and see the other discussion board on this site)

                GBS would not look like swelling of the spinal cord, so now it is much less likely that the nerve conduction test will be helpful. A spinal tap often reveals some abnormality when there is "inflammation" present (transverse myelitis) - such as elevated protein and/or elevated white blood cells. I suspect that the doctor is leaning towards a stroke because your daughters spinal tap was "normal". Is that definitely the case? Did he still send tests to look for signs of infection/multiple sclerosis/Devic's disease etc... that can also be associated with transverse myelitis?

                Usually strokes of the spinal cord affect just the anterior or "front" part of the spinal cord, while transverse myelitis will be less specific. Did the neurologist say the MRI showed problems in just the anterior part of the spinal cord? A stroke in this area will cause weakness in the body below the level of the injury and sensory problems below that level. The sensory problem will make it hard for her to feel temperature or pain when touched with a hot/cold/painful stimulus below her injury level. However, she should be able to feel vibration (ex. a shaking vibration hammer) and what's caused "joint position sense" in her arms/legs. For example if you moved her big toe up/down, she might feel that it is moving and tell you which direction. The neurologist should be able to do a careful examination to try to see if your daughter shows these findings.

                Sometimes it can be difficult to know for sure if the cause is transverse myelitis or a stroke. For that reason, often doctors aggressively treat for both possibilities until the cause becomes more clear.

                I am also a little concerned about her herpes infection. Did this just flare up recently? Did they check her spinal fluid for presence of the herpes virus (ask them if they did a PCR test)? If it is present in her spinal fluid I would be very eager to treat her aggressively with IV anti-viral medication, and you could even start treating her before the test comes back. It would be reasonable to ask an infectious disease specialist to see her, to get their input. This is a very reasonable request, considering how serious a case this is.

                If they feel that she did have a stroke, I disagree that there is nothing they can do to try to find out its cause. Does she have a history of smoking/diabetes/hypertension - which are typical risk factors for strokes in adults? Did they do an MRI of her brain as well that should evidence that she has had changes that are consistent with someone at risk for strokes? Have they checked blood tests to see if she has a genetic predisposition for forming blood clots that could put her at risk for a stroke? Does she have a rheumatologic disease (like lupus...) or another problem that could cause an inflammation of the blood vessels (vasculitis) that could also cause a stroke? All of these different causes of stroke have different treatments to prevent more problems. For example, if she had a stroke you could argue that she should be put on aspirin, a cholesterol lowering medication (statin class) and you should be making sure that her blood pressure remains high enough to keep good blood flow going to her spinal cord to try to maximize any recovery. If she has another disease process going on that increased he risk of stroke, she could need additional medicines to help treat that disease as well - for example, steroids if she had lupus.

                Again, I am so sorry you feel that you are not getting your questions answered and your needs met. Is the neurologist who talks with you the only one available? Have you spoken with the patient advocate yet? Is there any possibility that she could be transferred to another hospital - such as an academic one that may do a more thorough work-up? For example, UCSD or UCLA....

                While it is still very important to work-up and treat your daughter's current condition, it is certainly true that it is hard to predict the future right now and you need to encourage your daughter that you are there for her and that things should improve with time and to keep fighting. It will be a long road, but rehab will be a very very important thing to look forward to in her future. Please follow the SCI nurse's advice in that regard.

                take care, and keep us posted on her progress.

                Comment


                  #9
                  Spinal Stroke?
                  Originally posted by MeganK
                  My 32 year old daughter has just been tentatively diagnosed with spinal stroke. It started last Sat. morning. She woke up at about 7 with complaints of severe neck and shoulder pain. She also had numbness and tingling in her arms and hands. When she was in the ER they kept saying she was having an anxiety attack. Even when she went into respiratory arrest they said it was because she was hyperventilating. The second time she went into respiratory arrest they put her on a ventilator. She became incontinent of both her bowels and bladder and totally paralyzed by noon. She is in ICU at another hospital with no change in her condition except for a very high fever yesterday. She can only communicate by blinking her eyes. We were hoping that she had Guillian-Barre Syndrome, but the spinal tap was completely normal. She wants to get up in a chair but her nurses said it's way too early. Everything I've read on spinal traumas says quickly starting rehab is key to improvement. She has Medi-cal insurance. Is there any hope of her getting into a good rehab?
                  Dear Megan,

                  I am not sure that your daughter has spinal stroke or Guillain-Barré. Based on your description, her symptoms are not typical of either spinal stroke of Guillain-Barré. Spinal stroke is usually localized to a given level of the spinal cord. Your daughter's condition went from severe neck and shoulder pain to brainstem level, i.e. she can only blink to communicate, in less than 6 hours. The fact that she has a completely normal spinal tap is also very atypical of a spinal stroke. Both the rapidly progressive nature, the very high level of loss, and involvement of brainstem would be very usual for either spinal stroke or Guillain-Barré.

                  But, just to make sure that I have not misunderstood, let me ask some specific questions.
                  1. Can she move her face, i.e. smile, swallow, frown, etc.?
                  2. Can she turn and nod her head? Shrug her shoulders?
                  3. Does she have any sensation in her legs, torso, arms, neck?
                  4. Have they done an MRI of her head and ruled out any problems there?

                  I am asking all these questions to find out if she has a spinal level and what that level is. You did not mention sensory loss but presumably she has loss of both motor and sensory. The presence of a sensory level would imply that she does have spinal cord injury, regardless of cause, as opposed to a Guillian-Barré, which should not show a clear sensory level.

                  The fact that your daughter wants to sit up is a good sign. I agree with the nurse that one should be careful about early mobilization because people with high level spinal cord injuries frequently are hypotensive when they are sat up. She needs to be progressively tilted up to avoid fainting and such problems. Is she eating? Has she had any return of function in the past few days? Have they treated her with high-dose methylprednisolone yet? Finally, did she have any neurological problems in the past?

                  Wise.

                  Comment


                    #10
                    Back in 1984 my wife had about the same thing 2 year later we found it was a AV malformation that push on the spinal cord.I think they can run some dye test in the blood stream to find it

                    Comment


                      #11
                      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

                      Comment


                        #12
                        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.

                        Comment


                          #13
                          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.

                          Comment


                            #14
                            Megan,

                            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!

                            Comment


                              #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.

                              cWO
                              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                              Comment

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