spinal cord stroke

I'm 16 and was just returned home with a spinal cord stroke from a fibrocartilaginois embolism. It's rare so I would love to learn more and discuss outcomes with anyone.

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My daughter had a stroke to her cord during surgery when she was just 3 1/2 months old. She is now 8 years old. The injury is from T1-T6. She has had some recovery of sensation and function, although she is still in a wheelchair. We take her to the International Center for Spinal Cord Injury at the Kennedy Krieger Institute in Baltimore, MD. They have an activity-based program and are doing amazing work in helping people try to recover as much function as possible. I can tell you that I know two walking (on their own) quadriplegics. What level is your injury? You are now the 4th person we know with a spinal cord stroke.

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Thank you so much for your responce. My daughter and I are sharing this site together. She has been diagnosied with fibrocartilaginous embolism which occured while cleaning her room. Part of the disc blocked a vessel at T 10 - T11. She lost function and sensation however once the PT started working with her at Children's Hospital in DC she has started to regain function and feeling again. We are very concerned about a future stroke and were looking for people who know more about this issue.

I'm happy to hear about your daughters work at the Kennedy Krieger Institute. We left our doctor at Children's with a very uniformed prognosis possibility due to the rareness of spinal stroke and are now looking for a doctor that is more of an expert in this area.

It's always dangerous to discuss where you live however, it's remarkable that we both have a connection to Stafford.

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Hello, I am new to this site. I suffered a spinal cord stroke (infarction) 2 1/2 yrs ago. I was totally paralyzed from waist down in just a few seconds. Very painful and scary. I spent 7 days at UC San Francisco being diagnosed and then sent home to a rehab center to learn to deal with my situation. I was in rehab for 4 weeks, and during that time I slowly regained some feeling and with the aid of braces was taught to walk. Now 2 1/2 yrs later, I use a cane 40% of the time, depending on where I am going (crowds scare me as I don't want to be bumped and not have balance and fall). My injury was to T12. I have more feeling in my legs now, my bladder is functioning much better (I don't have to cath) but my bowell is still neurogenic but getting better. I have neuropathy in right foot but it is so much better than originally when my foot was twisted. My left foot is really doing good. I go to a gym 3 days a week to work out my hamstrings and get strength in upper and lower extremities. I am an older adult and I was a very athletic person. This stroke is very very rare, only 12 out of 100,000 get it. Don't give up, it will be slow but you will improve and get better. I hope I have helped you and I wish you all the best in your recovery.

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Thank you your words really helped. I too am an athlete and doctors say because im 16 I am due to recover. The problem is some doctors say I can go back to sports and others don't. Has any doctors talked to you about the strokes ever happening again? Are you being careful with your back? Because I would like to do sports like surfing. I'm pumped to hear your really recovering and that your not totally buried in a hole and that your finding your direct path to the sun!!!

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I was an avid competitive golfer but unless my foot recovers (numb still) I won't be able to golf again. I don't care because I can walk. I am much older than you so I know sports are very important to you. Be mentally tough (like you were in your sports) and work hard at rehab. Have a very positive attitude. Mental healing of your injury is as important as the other aspects of your recovery. When possible, I find an area, maybe your bedroom, lay on the bed and close your eyes. Think of a 'healing fire ball' (mine was always yellow, but color doesn't matter. Picture it going to the area that was injured and healing the injury. They thaught me that in my rehab in the hospital and the mental aspect of thinking healing I feel works. I hope that doesn't sound crazy but it has worked for me. I was told that my type of injury (spinal cord stroke) is very rare and only occurs once. If my injury would have happened when I was your age, I think I would have become a physical therapist and helped people with strokes, etc. Please continue to let me know how you are doing.

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I will try visualizing the healing. I have worked really hard to keep a positive attitude and positive people around me. I have listened and tried all the supportive ideas from everyone. The doctors did say it won't happen again. But they also say just in case be careful. Was your stroke caused by a fibrocartilaginois embolism or blood clotting?

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Some doctors thought I had a virus (Transverse Myletis) but the UCSF doctors couldn't prove it, so they said it was a stroke - Spinal Cord Infarction (blood clott). It's a one time event. I was in a wheelchair for 6 mos because the braces they had on my legs caused me to developed a sore which I didn't see and it became infected. That really sat me back for months until it healed. I never gave up and slowly I have recovered feeling in areas of my legs, feet, buttocks, etc. I still have areas that are numb or semi-numb and my right foot is pretty numb but I can walk on it. Nerve regeneration takes time and my neurologist has me on vitamins like Folic Acid, B12, to help the nerves get better. I have a feeling you are on the East Coast and I am sure your mom is checking to find a Neurologist that is familiar with your injury. When you have a rare injury like we had, they don't see many like us. I have a question, how much feeling do you have right now and are you working with a physical therapist now? Be patient and remember to think positive.

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Someone in another forum RA UK suggested my problems may be Hughes / APS relates to blood clotting . There is research being done at St Thomas' & Barts London.Thought here there is evidence possibly re stroke or related conditions .

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We are on the east coast near Washington DC. Since I've been healing so well we have left Children's Hospital and don't have a follow up Dr.I thinking of pursuing the Kennedy Krieger Institute in Baltimore that was recomended by the buckletwins. I'm working with a PT she is great. but I do still have a little numbness in my right leg. I would like to participate in a Dr. study because I don't want to stop my athletes. My mom is very worried. So am I of course. Do you think they told you it wouldn't happen again because it's cause was a blood clot. Mine was do to disc stuff that broke off and got into my blood vessel. I think these are good questions and wish I had someone to ask. Keep up the walking. have you tried doing your golf swings again?

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Hi,
I am so glad you are recovering so quickly which is a very good sign. My neurologist at UC San Francisco and here in my home town have told me it is a one time occurance. According to my research on the internet they say the same. And mine was due to a blood clot not caused by a piece of disc. You have really good hospitals and doctors on East Coast. You need to find a good Neurologist that is familar with your injury. Since it is rare, they don't see many patients like you so you will be a good challenge for some doctor. I would not be in a rush to pursue sports until the doctors check you out. You may need to be on some good bone strenghtening regime for awhile too. Maybe vitamins etc. So don't rush it, you're only 16 and I am sure the ocean surf can wait awhile for you. I have gone out and hit some golf balls, but to be honest, I don't have the fire in the belly to pursue it anymore. I am into working out at the gym and having lunch with friends (things I have not done for a long time because I was always out on a golf course). I am finding out that there is more to life than golf. But then I am not 16 and I remember what it is like to be your age and how important certain things in your life at that age are. I would say let your body heal this summer (no surfing) and let the doctors work with you on what needs to be done. Keep me posted. You're a good patient and a very smart young lady.

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I have been in touch with John Hopkins and the Kennedy Krieger Center
First I'm meeting with my Dr. on Monday. I took my board to the beach. I sat out and rode lying down just a few knee high waves. It is a way to try to stay in touch. I hope to get more info when I get a Dr. What's up with the twins and murphybrown.

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Dear Mkai,

So glad to hear from you. I know you are sweltering in the heat back there and I bet it felt good to 'ride the waves'. It sounds like you are really doing well and that is wonderful news.

I am on a Vitamin B12 plus other B's from the Neuropathy Treatment Group which is on the web under that name. I am refusing to take some of the medications that are out there due to side effects that many people can have. So my neurologist has suggested that I try this treatment of vitamins and see how it works. So far (I've been on it for 2 weeks now) I have noticed that my ankles are not stiff like they use to be. And I haven't had any pain during the night. I'll let everyone know If I continue to see more improvement.

Please let us know what your doctor says when you see him on Monday.

Stay well.

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Previous post....I hope you ARE NOT sweltering in the heat....It pays to preview your post. Sorry about that line...

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I had a spinal cord infarction/stroke March 0f 2011. After having 2 cat scans one with contrast one without, 5 MRIs one with contrast one without then they did body sections, next a spinal tap they even checked for cancer cells all of which everything was clear and did not prove what caused it. However, my doctor said that I had had classic symptoms of a SCI and therefore he would treat me as such. Another of my doctors said that 80% of SCI patients causes were not found. I was in the hospital six weeks five of which were in rehab. I was then released to outpatient therapy then released to exercise on my own (the PT wrote me a plan to go by). I left the hospital in a wheelchair. My outpatient therapist was very good. With his help I went from the wheelchair to a walker then to a cane which I still use. I have a slight balance problem which causes me to be at high risk for falling. I can take a few steps on my own. It has been 19 months since I has this stroke and I am still working out at least three days a week. I was bowling and into the third game when this happened to me. I have a lot of burning in my legs which I take Neurontin for relief sometimes it feels like tight very large rubber band is around my legs. Also, massages help I use Biofreeze for that and it helps alot. By the way I was 68 when this happened to me and I need to add that I have great support.

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Boy! It sounds just like what happened to me. I had my SCI in Oct 2009 and spent 6 weeks in hospital as well. I use a cane now, and go to the gym 3 days a week. I have a neurogenic bladder and bowel, however, my bladder is finally working well so I don't have to cath anymore. Still have neurogenic bowel. My neurologist says bowel and bladder are very slow in recovery. Some doctors and therapists think it was transverse myletis (virus) but UCSF doctors (I was there for 7 days) after many MRIs, cat scans, etc etc said it was a SCI. I walk with a cane as I have numbness in my hamstrings and right foot is very numb but showing signs of recovery. I will sometimes wake up with burning pain in my legs but since it is infrequent now, I am not on any medication for it. I am trying a B12 therapy from the Neuropathy Pain Treatment center (recommended by my neurologist). Been on it 1 1/2 mos and have noticed some feeling in areas that were numb. Apparently B12 can get the nerves to regenerate. I want to avoid some of the medications that cause side affects. So we will see. I was 66 and very athletic and a competitive golfer, so now at 69 (female) I work out at the gym to stay strong. It's hard to believe this could happen to me, but I feel I am fortunate that I can walk now. Let me know if you have complete use of your bladder and bowel. I might add that an SCI is very rare, only 12 out of 100,000 get this....we would have had a better chance winning the lottery! It's good to hear from someone else that we can share our stories.

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My internist asked me if I could feel the pressure to void, which I could, so she had the catheter removed less than two weeks after I had been in the hospital. I could not go and use the BR without total help which did cause problems according to which nurse was on duty!!! So to answer your question my bladder works better than my bowels. I take Miralax which was recommended to me by a neuro-nurse. I take one half of the recommended dosage along with plenty of fruit and fiber and that works good.
I too was told by my neurologist that the bladder and bowel was the last to recover. What is your dosage of B12 and in what form oral or injection and how often??? What meds were mentioned to you to take that caused bad side effects???? How long after you had the SCI that you were diagnosed and what treatment did you receive? Do you or did you have strange sensations in your legs (I called it noise) and also the feeling that was like touching a lit sparkler (when you were a child).

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I take 5 mg blood pressure daily. That's the only prescribed med. Other pills are all vitamins: B12 1,000 mg;Folic Acid, D,Calcium,Fish Oil and a baby aspirin plus a combined B1,B12, R Alpha Lipoic Acid which comes from the Neuropathy Treatment Center. The latter is 2000 mg two pills twice daily. My neurologist suggested this because I refuse take meds such as Lyrica, etc due to all the bad side affects I read about. It seems like I am having slightly more feeling in my bad foot but I don't want to say for sure until 3 mos are up and then I evaluate it for sure. I still have to do digitals for my bowels as everything seems dead there. I had a strange thing happen about a year prior to my SCI where my leg became numb in the middle of the night and I fell when I got out of bed. But it quickly went away. I've had weakness in my legs occasionally but I also had a disk problem and I golfed. Then in Oct 2009, I started having pains in my legs, so I laid down on the bed and suddenly I had shooting pains from my waist down my legs. Very painful and I was paralyzed. I spent 4 days at a local hospital and the neurosurgen wasn't sure if I had virus or cancer and he wanted me sent up to UC San Francisco for further testing. I was ambulanced up to UCSF for 7 days of MRIs, Pet and Cat scans, checking every inch of my body plus spinal tap. They decided it was SCI so then I was sent back home to a rehab hospital for 4 weeks to learn how to deal with my injury and by that time I was getting feeling back in parts of my body so I was taught how to walk with braces. Then after 4 weeks I went home and about 2 weeks later I discovered a sore on bottom of my bad foot and it was infected all the way to the knee.
So I was back in wheelchair and they did skin grafs and 3 mos later I was able to start outpatient rehab. 4 mos later I was sent to the rehab gyms regular gym which I go to this day 3 days a week. I usually use a cane as I have had some spills and they are not fun. But I can walk without a cane in certain places which I do at the gym just so I can grab on to something if I need to. I am not 100% stable due to right foot numbness. You may want to run this by your neurologist but I am trying this Neuropathy Support Formula from Neuropathytreatmentgroup.com. I may end up on some other meds but want to try this before I do and I hope it works. Did you have the same pain shooting down your legs when you had this problem? My buttocks and hamstrings are still numb.

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I was bowling and had a pain which felt like a tight muscle in my back I massaged it and the feeling went away. My right foot began to turn slightly inward I noticed it while getting in the car - the thought occured to me " my foot looks like I have had a stroke". But I could speak whole sentences, neither side of my face was drooping and I could certainly lift my arms. I went home to rest but the pain in my back started and this time it was intense. I asked my husband to take me to the ER and to call our internist. My right leg was affected more than the left. I could wiggle my left toes and lift my left leg slightly but not on the right. The paralysis started just a little below my waistline ( by maybe an inch) so it affected my buttocks as well. I was diagnosed the next day after all of the tests were studied and found to be clear even my blood work was good.
I got most of the feeling that I have now through therapy OUTPATIENT and at the Sports Medicine Center I was going to until the end of July. We belong to The YMCA and also have a gym at our community clubhouse which I use at least thre times a week. My neurolgist does not follow me as closely as I think he should but then again every question I ask him he says that he doesn't know except for one and that was about a pain in my back that it frightened me and he said that much he could assure me that I did not have to worry about it. At times it feels like I am sitting on a rubber ball this comes and goes. If I am up on my feet for too long my legs hurt and burn terribly and I begin to perspire more than what is usual for me.

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Yes, my right foot is affected more than my left. My right foot was turned in (dropped foot) and still is slightly. I couldn't even move a toe but now I can bend my toes and I have slight feeling on bottom of foot. This affects my balance. My buttocks is numb in spots and it does feel strange to sit. If I sit too long, it makes my right leg feel more numb and very hard to walk good. It must cut off circulation. When I get pain occasionally in middle of night on my feet, I break out in a sweat...it's so painful and then will go away suddenly. I am on B12 and folic acid vitamins which neurologist and phys therapist said helps to re-generate nerves, so be sure to take it. Also working out in the gym, helps too. I do the elipitical for 10-15 mins, then some upper body weights then put 2 5lbs weights on both legs and walk up and down big steps 20 times each foot. Then I do 20 kicks forward, backward, sideways. Then I do bridges, froggy glutes and some other one for my hamstrings. I have a lot of strength in numb legs but I believe it has helped me get better balance. I don't have to cath anymore, which is such a blessing, as I don't have bladder infections anymore, but still have leaking which my urologist will put me on a treatment in Oct called Urgent PC. Now if I could just get bowel to work... I now only see my neurologist only once a year, he is very busy with people much worse than I so I guess I am lucky in that respect. I will be emailing him after my Neuropathy pills are done and let him know if I feel it helped me and is worth spending $40 a month. Too bad we can't get stem cell transplant, but maybe later on. We are very fortunate that we didn't get the brain stroke, so we can talk and do much more than many of those patients are able to do. So good to talk to you, please keep in contact, I feel as though I am not alone in this unknown journey of ours. Remember only 12 out of 100,000 get this type of stroke. Oh let me know what vitamins you take. Are you on aspirin? Have a good evening.

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These are the meds that I have been put on since the SCI: NEURONTIN for burning, LIPITOR for cholesterol, PLAVIX for thinning the blood and one ASPRIN 80 mg.
And I have taken calcium with D for many years. However, my Vitamin D has been increased to 2000 iu.
Do you have any BURNING SENSATIONS? I haven't heard you say. In your LEGS of course.
Immediately after my SCI was diagnosed I was put on massive doses of predisone then of course tappered off. The Predisone was for swelling and inflammation. I just wondered if you were given this treatment.
I have had so many questions about this condition, but no one to answer them. I am so glad that I "stumbled across this site" and that you had found it as well.
I will see my internist next Friday and will run the B vitamin therapy by her.
All that I can say is hang in there and God bless.

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