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Post by m1ta on Nov 19, 2011 14:18:35 GMT -6
Hi all,
Another update. I was discharged from a spinal injuries rehab unit a couple of days ago. I spent 7 weeks there undergoing physiotherapy and OT. Most of the people in the rehab centre had suffered spinal injuries through accidents and trauma. Many of them had complete injuries which made me feel both lucky and guilty that I had some mobility. As a result I worked really hard and am now walking decent distances with the aid of crutches. I have been told I have Brown Sequard Syndrome due to the lesion which has left me with good muscle tone and strength on the right hand side but generally poor sensation. The left side is the opposite - with reduced tone and strength but better sensation. This has affected my balance considerably, in fact I am more stable walking than standing still.
Over the last couple of days I have been suffering a 'banding/hugging type pain', which I am hoping is due to the fact I am much more mobile and working muscles that have not been active for a while. I have had this pain before pre and after surgery, but it has been particularly bad over the last couple of days. I am considering getting on the phone on Monday if it doesn't improve. Anybody familiar with this type of pain? It is worrying me and my wife as I still have about 5mm of ependymoma left inside the spinal cord and my next MRI/appointment with the neurosurgeon isn't until mid December.
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Post by Todd on Nov 19, 2011 14:28:56 GMT -6
I have had it only a little but this morning I woke up to a very tight band pain all the way around my upper torso. I didn't like it very much and decided I wanted to not have to deal with it today, so, out came the meds. much better after a muscle relaxer.
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Post by kansasmom on Nov 19, 2011 14:29:36 GMT -6
It's good to hear from you James. Well done on your progress through rehab and on getting home. I hope the adjustment to being home does not take too much of a toll on you and your wife. It's a slow process. C is still improving week-on-week 6 months after his discharge - it's only when I think back to how he was at first that I realize he has improved so much. There's still a long way for him to go too. I don't know the answer to your question about the banding pain, but I've seen Todd and others mention it. Which part of your body is affected by that? Also, there are others at the spinal cord injuries forum with Brown Sequard Syndrome so if you have questions specific to that you might pop over there and post them: www.apparelyzed.com/forums/forum/69-incomplete-spinal-cord-injuries/Welcome back to the forum. I wish you were 100% better, but it sounds like you are thankful for what you have.
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Post by m1ta on Jan 12, 2012 14:55:43 GMT -6
Just got back from a late appointment with the neurosurgeons and as far as the team can tell I am completely tumour free! They believe the small part of tumour they were unable/afraid to remove has 'died' due to them destroying the blood supply to it. If my new MRI didn't have my name on it I wouldn't have believed it was my spine I was looking at. I feel so happy and also very lucky and grateful. I don't have to have another MRI until September!
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Post by kansasmom on Jan 12, 2012 16:31:00 GMT -6
James that is great news!
How are the Brown Sequard symptoms? Have they resolved any? Are you still doing physical therapy? How is your wife doing?
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Post by m1ta on Jan 13, 2012 3:07:53 GMT -6
Thanks kansasmom,
The Brown Sequard symptoms have remained pretty much the same. I still have physical therapy once a week at home and go to the gym once a week. My wife is doing really well, she's 36 weeks now!
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Post by kansasmom on Jan 13, 2012 10:34:11 GMT -6
Wow, you can expect to be a dad soon. Then you will have other things to worry about, like how to change your first diaper/nappy and how to get enough sleep Do keep us all updated
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Post by leks on Jan 16, 2012 3:36:13 GMT -6
Congrats on the upcoming new addition to your family m1ta!
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Post by Tronamon on Jul 24, 2015 15:49:09 GMT -6
Wife of M1TA - baby arrived safely and is now 3 years old! Our son provided much needed distraction for James post surgery. I have to say James remained so positive throughout his recovery and whilst he did have difficult days he remained focused on recovery and was back at work part-time as a teacher (on his feet all day) 6 months post surgery and back full time after a year. We received positive news in the immediate months after surgery confirming that the remaining tumour, whilst visible on the scans, did not appear to be growing. Unfortunately this changed last year. Almost 2 years to the day of the first operation we received the news that the tunour had not only grown but had doubled in size (from 5mm post op 09.09.11 to 1.2 cm in September 2014). It was highly recommended that a further operation was necessary to remove the remaining tissue. After two months in rehab learning how to walk and a painful few months recovering at home after the first operation my husband was more that reluctant to go through that procedure again however, after very careful consideration, he decided to go ahead. Im pleased to say that the second surgery on 9 Decenber 2014 was successful and the consultant is almost certain that the remaining rumour was fully removed. I was more than shocked two days post surgery to be greated at the hospital entrance by my husband walking 'very well' towards me. Such a contrast to his situation after the first operation. We have since received the results of his post op MRI which confirm the tumor has been fully removed. He will have to have 6 monthly MRI scans with contrast for the next few years and it was indicated that MRIs less frequently will occur over the next 10 years. We remain positive that this is the end and we can now focus on our future and our family. My husband is not without symptoms now, he does have a lack of sensation from his waist down which he describes as being no worse post 2nd surgery and he suffers regularly with banding pain or back pain. He also complains often of a burning sensation in his right foot. My husband rarely takes painkillers but will do so if his symptoms are particularly bad. As my husbands tumour was from T2 to T11 a large section of his Lamina was removed and the only thing supporting his spine now are his vertebrae and his ribs. My husband has developed a hunch-back which is more obvious when he is tired or in pain but we have been advised that correcting his posture should prevent this from getting worse and it certainly is not bad enough for fusion to be recommended. Other than this, life is fairly normal and we are currently trying for baby number 2. I am deeply sympathetic to everyone on here going through such a frightening and uncertain time but please do stay positive and focused on your rehabilitation. In the very early days it was difficult for us to even imagine that we would be where we are today and I believe very much that perhaps we wouldn't be if it were not for my husband and his sheer determination and positivity. I'm thankful every day for my husband in my life. Very proud of him.
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Post by dmdgood on Jul 26, 2015 21:35:11 GMT -6
What a beautiful story. Thank you for sharing Tronamom. Your husband's story gives me faith to keep going. Sometimes when you hit an adversity such as the residual of the tumor growing in size, I can imagine how disheartening it can be, especially as there is already trauma associated with being diagnosed with a tumor. But your husband's story motivates me to keep going, as it is proof that one may just get through it and get a second chance at life. I am in watchful waiting mode and far from deciding to have surgery, and it's nice to know that if I eventually did, things may just be OK. I know it's different for everyone, but your story gives me so much hope. All the best to the four of you.
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