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Thread: Spinal stroke question for Dr. Young

  1. #1
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    Spinal stroke question for Dr. Young

    Dr. Wise Young,
    I am new to the forum and saw a post from you that said you were a spinal stroke researcher. I am a 65 yr. old female. I had a c7-t2 spinal cord stroke Feb 21, 2013. I am recovering and am able to walk with a cane now. My question concerns the possibility of a familiar link for this type of stroke. The only other person I know who has had a spinal stroke is a cousin of mine. Does the occurance of this type of stroke in two family members put my children and grandchildren at greater risk of this happening to them? I appreciate any information you can give me concerning this.
    Thanks
    AnnieM

  2. #2
    Quote Originally Posted by AnnieM View Post
    Dr. Wise Young,
    I am new to the forum and saw a post from you that said you were a spinal stroke researcher. I am a 65 yr. old female. I had a c7-t2 spinal cord stroke Feb 21, 2013. I am recovering and am able to walk with a cane now. My question concerns the possibility of a familiar link for this type of stroke. The only other person I know who has had a spinal stroke is a cousin of mine. Does the occurance of this type of stroke in two family members put my children and grandchildren at greater risk of this happening to them? I appreciate any information you can give me concerning this.
    Thanks
    AnnieM
    AnnieM,

    The fact that you have two family members with spinal strokes certainly suggests a genetic disposition. There are genes that increases risks for arteriorvenous malformations and aneurysms. For example, Thiex, et al. recently published a link between RASA1 and spinal arteriovenous anomalies. I attach an abstract of that article for you.

    Wise.

    1. Thiex R, Mulliken JB, Revencu N, Boon LM, Burrows PE, Cordisco M, Dwight Y, Smith ER, Vikkula M and Orbach DB (2010). A novel association between RASA1 mutations and spinal arteriovenous anomalies. AJNR. American journal of neuroradiology 31: 775-9. Department of Neurointerventional Radiology, Children's Hospital Boston, Harvard Medical School, Massachusetts 02115, USA. BACKGROUND AND PURPOSE: CM-AVM is a recently recognized autosomal dominant disorder associated with mutations in RASA1. Arteriovenous lesions have been reported in the brain, limbs, and the face in 18.5% of patients. We report a novel association between RASA1 mutations and spinal arteriovenous anomalies. MATERIALS AND METHODS: In a collaborative study, 5 index patients (2 females, 3 males) with spinal AVMs or AVFs and cutaneous multifocal capillary lesions were investigated for the RASA1 gene mutation. RESULTS: All 5 patients were found to have RASA1 mutation (2 de novo, 3 familial), and all had multifocal capillary malformations at birth. Neurologic deficits developed at ages ranging from infancy to early adulthood. All spinal anomalies (2 AVMs at the conus, 1 AVM at the lumbosacral junction, and 1 cervical and 1 cervicothoracic AVF) were complex, extensive, and fast-flow lesions. All patients required treatment based on the clinical and/or radiologic appearance of the lesions. CONCLUSIONS: To our knowledge, an association of RASA1 mutation and spinal AVM/AVF has not been described. MR imaging screening of patients with characteristic CMs and neurologic symptoms presenting at a young age may be useful in detecting the presence of fast-flow intracranial or intraspinal arteriovenous anomalies before potentially significant neurologic insult has occurred.

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    Dr. Young,
    Thank you for the information. When my 34 yr old son was about 18 mos old, he had an episode where he stopped walking and seemed to develop progressive paralysis of all 4 extremities. No cause for this occurance was identified at the emergency room. Of course their emphasis was on meningitis. We were sent home and told to come back if he got worse. We were quite upset at the time. The only thing left to loose at that time was respirations. The paralysis resolved itself over the next 2 days and he has never had any other issues. At the time I thought he may have just had a lot of muscle pain form the flu or something and that was why he didn't move his limbs. In view of my spinal cord stroke I wonder if this might not have been some transient problem. Would anything show on an MRI on him this many years later? Thank you so much for sharing your knowledge and expertise
    AnnieM

  4. #4
    Quote Originally Posted by AnnieM View Post
    Dr. Young,
    Thank you for the information. When my 34 yr old son was about 18 mos old, he had an episode where he stopped walking and seemed to develop progressive paralysis of all 4 extremities. No cause for this occurance was identified at the emergency room. Of course their emphasis was on meningitis. We were sent home and told to come back if he got worse. We were quite upset at the time. The only thing left to loose at that time was respirations. The paralysis resolved itself over the next 2 days and he has never had any other issues. At the time I thought he may have just had a lot of muscle pain form the flu or something and that was why he didn't move his limbs. In view of my spinal cord stroke I wonder if this might not have been some transient problem. Would anything show on an MRI on him this many years later? Thank you so much for sharing your knowledge and expertise
    AnnieM
    AnnieM,

    The procedure will be first an MRI with contrast. This will show the blood vessels with the contrast in the arterial phase and then the venous phase. If your son has significant arteriovenous malformations or aneurysms above a certain size, this will probably detect it. If a malformation is present and it looks as if surgery may be helpful for preventing hemorrhage or other problems, then more detailed angiography can be done.

    I began my career in the early 1980's helping treat patients with spinal cord AVM's and the treatment today is so much better than what it was 20 years ago or even 10 years ago. Interventional neuroradiology is really very good.

    Wise.

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    Dr. Young,
    Thank you for the valuable information. I haven't been on line for several days. Your information is greatly appreciated. It is so difficult to find anyone who is informed on the subject. Thanks for being willing to spend your time helping in this forum

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    I am new to the website.
    My husband (healthy, active, 43 years old) had severe back pain for 2 days which became loss of feeling in feet, tingling in legs, loss of feeling in upper legs and finally full paraplegia 4 days after the first backache.
    mRI showed swelling at T-11.
    Lumbar puncture showed inflammation but no blood.
    He was admitted to the hospital and started heavy doses of prednisone immediately. We were moved to a rehab facility after 5 days in the hospital, but the first morning the rehab was to begin he had EXTREME pain all over his trunk which lasted 4 days. He cried out every time they turned him for the paralysis, anytime he was touched at all, and even if they tried to put a sheet on him. He was on prednisone for the next 5 days, heavy doses of Dilauded for the severe pain, and Valium for muscle pain. It appears now, looking back, he was having an infarction of the spinal cord.
    The doctors tested for many diseases, viruses and bacteria,...all came back normal.
    Did a lumbar puncture and found protein, white blood cells and inflammation.
    Was moved out of rehab hospital after 5 days and back into hospital where they gave him 5 doses of plasmapheresis over 10 days.
    No change in paralysis; tested at Asia A complete.
    Next he went back to the rehab hospital and spent 2 weeks doing intense PT and OT, 8 hrs a day. He was begging for more workouts and to be pushed harder.
    Suddenly had more severe trunk pain for 1 day and MRI showed inflammation had moved up to T-9.
    Underwent 4 infusions of IVIG, but no change in condition.
    Suddenly in the middle of the night experienced more severe trunk pain and next MRI showed the inflammation had moved up to T-5. He lost all the balance in his trunk and much of the muscle strength he had gained through the rehab.
    He was re-admitted to the hospital and underwent an angiogram where dye was inserted into every nerve branch in his spinal cord. They had suspected an AVM or Fistula to be the cause of interrupted blood flow to cord but found nothing significant in cord other than slow progress of the dye from top to bottom of the cord...no blockages, though.
    After 5 more days in the hospital was sent back to rehab again and had to start rehabbing from scratch.
    Currently he is home and we are struggling with his life as a para. I have never experienced such devastation before my eyes. Every action is a struggle, has lost all bladder and bowel function and still experiences daily "banding" pain around trunk at the T-9 level which feels like a tight corset or rubber band is around his middle. He is on 600mg Lyrica a day but nerve pain still breaks through.
    We are both very very depressed and both on antidepressants. It has been 4 months since this sudden, devastating condition began and he still has no movement at all. About a month ago he began having strong throbbing pain in the rectal area, believing it to be a hemoroid type situation. This area hurts daily now. I am extremely hopeful that this pain is the beginning of some recovery and some sign that he is having some nerve regeneration. I push his feet up towards his body every morning and he feels tingles all over his legs and lower back. I also bend his knee up toward his trunk and press in for a long stretch. He says he can feel the stretch in his lower back. I am praying, begging God for a recovery of some sort. I would be elated if he could recover enough movement to stand and pivot to get in and out of wheelchair or to (I hesitate to even think of the possibility) to slowly climb a staircase and have a bit more normal home life. We have 4 young children who are all dealing with their active, sporty, happy dad being in such pain and so helpless.

    I am looking for any sort of information or a story of someone with a spinal stroke that begins showing recovery or improvement later on after a few months.
    I am fully holding on to hope and believing a miracle could happen and he will begin to recover.
    Many of the threads on this site were started in '09, '11, etc.
    I'd love to hear what the outcomes were with spinal strokes. Any advice?
    Last edited by Heartbroken; 06-01-2013 at 01:38 AM.

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    Heartbroken, spinal infarcts start up and go down the body as does TM and most other atraumatic SCIs. Has he been tested for GBS? It starts down and goes up the body.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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    Hi Sue, and thank you for responding.
    When this all first started in February the first diagnosis was TM, but they never found any virus in the spinal fluid.
    The second week a different Neuro-hospitalist saw him and suspected Neuromyelitis Optica (NMO) but the test came back negative and he had no optic involvement at all.
    I did ask about GBS and I am not sure if they tested for it, but I was quickly told GBS was not suspected since GBS is much more peripheral... and the lesions on his spinal cord make his case a central nervous system disorder.
    Nobody suspected a stroke in the beginning because they said the multiple MRIs would most likely have shown that. Again he was tested for NMO and it was negative AGAIN but we were told by the same Neuro team that although is vision and tracking tests were completely normal, this was a serum-negative case of NMO.
    They began treating with Rituxan infusion the very next day.
    We decided to get a second Neuro opinion since this hospital Neuro group was beginning to seem indifferent to him and were not following him very closely when passing info on to each other.
    Within 10 minutes of being in the second neuro's office he thought it was vascular based on the second LP being high with serum, suggesting the fluid was trapped in the cord.
    Next came the angiogram which was specifically looking for an AVM (malformation) or fistula. Nothing was discovered from the angiogram aside from the dye slowing down significantly while travelling downward in the spinal cord. No blockages, though. The "second-opinion neuro" suggested we not continue with the second infusion of Rituxan as he felt strongly this was not NMO and rather was an ischemic event.
    He said there was only about a 10% chance it is NMO based on the sequence of events, 2 negative NMO tests, and no upper body or optic involvement.

    Now I am just praying, begging, and wishing for the nerves to regenerate, lesions to heal, and that he will someday walk again. Now that it has been 4 months to the day that the initial sudden pain began I am scared to think he hasn't had any significant recovery yet. Except rectal pain.
    Any more insight?

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    I hope it's not an infarct as I have yet to hear of real recovery past what methylprednisolone or tPA can do within the first few hours. It would help to know which hospital and rehab he went to. Check out the transverse myelitis association online. If it is TM, ADEM or NMO they can direct you where to look for experts in your area or to send copies of his tests for another look. Rarely is the virus that causes TM still in the CSF when paralysis hits. It does leaves markers though. I'd also ask your neuro about any other infection that can attack the CNS. My infarct was small and yet it could still be seen on an MRI 21 years ago. Has he been tested for any thing like Lyme or did he have any vaccines a few weeks before the onset of the pain and paralysis? Any traveling?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #10
    Quote Originally Posted by Wise Young View Post
    AnnieM,

    The fact that you have two family members with spinal strokes certainly suggests a genetic disposition. There are genes that increases risks for arteriorvenous malformations and aneurysms. For example, Thiex, et al. recently published a link between RASA1 and spinal arteriovenous anomalies. I attach an abstract of that article for you.

    Wise.
    Wise,

    I was always led to believe that AVMs were congenital, not genetic. At least that's what I found when researching this back when my wife and I were deciding to start a family. I'd hate to think that my son, 14, has to be on guard for AVMs.

    Stephen

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