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Post by Todd on Jun 5, 2012 9:31:28 GMT -6
There is such a critical "key" point in your story and that is, you keep pushing yourself to the next level. When you grow up healthy, you get used to bumps, scrapes, and breaks and getting back up and going 100% fairly quickly. These SCTs knock you down for a long time and I have witnessed people, myself included, not really expecting how long and how hard the road is to recovery. depression sets in, you start not keep up with therapy, etc... The key, and this is a running thread through your story, is to keep at it. This is one of those life events where getting better means you have to really want it and you have to always keep working toward that goal. it doesn't just happen over time.
glad to hear about your progress. On a related note, I read somewhere that the nerve monitors they use during surgery are not always 100%. I, too, have half my body numb post op with the docs scratching their heads because nothing showed up on the monitor. I do believe the monitor is critical I just am not convinced they catch every possible instance of neural trauma during surgery.
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Post by slackjaw on Jun 5, 2012 10:04:00 GMT -6
Thanks Todd... nail on head! Self motivation is definitely key, and was particularly HUGE and why I recovered so quickly on the first go-around. I have to realize now though, on top of being older the tissue was in really rough shape at the point of injury (surgery) so recovery time will be a LOT longer. And yes the other thing about the neurophysical monitoring in my case... there wasn't any kind of strong signal to begin with!
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Post by slackjaw on Jun 5, 2012 10:33:19 GMT -6
Brilliant news, sounds like your very head strong which has assisted you well in your recovery. I hope you continue to come on leaps and bounds. Can't believe it took them so long to diagnose you though? Thanks for sharing your story xxx Thanks kezmc3. The length of diagnosis was partially my own fault. Because my initial diagnosis pointed to a demyelinating disease, I was of the mindset that nothing much could be done about it anyway... I will just take my lumps. When I saw a neurologist after my second episode in 1994, he was adamant about running another battery of tests. I flatly refused. I had spent three months hospitalized at a major university, and all of their testing amounted to nothing. Now he wants me to go thru all of the same testing again?!? I walked out. Hard to say where I would be at today, if they had discovered what was really going on back in 1994. Surgery would have been a much riskier affair compared with 2011. At least I was able to enjoy MANY years of relatively mild impairment. The thing is... my impairment is not a result of something stupid I, or anyone else did. A genetic malfunction occured at birth and caused a malformation of vascular material within my spinal cord. I had a ticking time-bomb regardless. Heck, if it weren't for modern medicine... I would have died from this at the age of 21. Being depressed or angry about my situation does absolutely NO good. I just accept what IS, and press on the best I can. Some key info I read going into this: "Cavernous malformations typically hemorrhage in small amounts with bleeding episodes separated by months or years. Therefore a hemorrhage may occur with exacerbation of symptoms followed by gradual improvement in symptoms as the blood is partially absorbed. Prior to MRI and CT scans, this clinical pattern was often misdiagnosed as a demyelinating process. In fact since the advent of CT and MRI studies, some patients who had carried the diagnosis of multiple sclerosis have subsequently been scanned and found to have cavernous malformations as the etiology of their episodic neurologic dysfunction. Although small, repeated hemorrhage is common, some cavernous malformations can present with a significant hematoma and severe neurologic deficit."
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Post by slackjaw on Jun 5, 2012 11:11:31 GMT -6
Thank you for sharing your story. I am 57 and was diagnosed with a cavernous angioma in the T2-T3 area of my spine approx. 8 years ago and I was told that the MRI indicated it had bled at some point. I have had several MRIs over the years to monitor it. I am fortunate to be able to see one of the best neuro surgeons at Mass. Gen. Hosp. I have an MRI scheduled for June 20 and am glad because a few days ago I developed a constant warming sensation that started in my left foot and now runs up to my buttocks. I searched the Internet about it and this seems like it could be linked to the CA. My right big toe has been numb for about 4 mo. but my GP and podiatrist think it's a local issue in my foot. I've been wearing orthotics but it hasn't helped so I'm not so sure. Because of location of the CA, I think the doctor would prefer not to do surgery because of the possibility of paralysis. The CA is located right along the spinal cord. I'm anxious to see if the MRI shows any change in the CA. Hi Cape Cod, I don't want to alarm you, but take it from me... a bleeding lesion in or around your spinal cord is NOT something you want to "sit" on. Statistically speaking, the risk of bleeding with these things is low. But once they DO bleed, the risk of successive bleeding is greater with worsening severity over time. It sounds like your lesion might be outside of the cord? In that case, surgery is even less risky. EVERYTHING points to having one of these things removed once they start bleeding. I would not trust anything a GP or podiatrist says with regards to something that may be happening with your spinal cord. Good luck to you!
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Post by Cape Cod on Jun 9, 2012 15:10:35 GMT -6
I posted on June 4 that I was scheduled for an MRI on the 20th but had developed a warming sensation on my right side. After a few days, I began to realize that I actually could not feel cold, hot, or pain on that side.
I decided to call my neurologist at Mass. Gen. and his very kind nurse thought it was an important enough episode to warrant moving my MRI up to today and to visit with the doctor.
The result is, the cavernous angioma has more the doubled in size due to bleeding. The dr. wants to review the scans further and discuss it on Friday with his colleagues at their weekly meeting. We will talk afterward to decide what course of action, if any, I should take at this time.
My sense, from our brief discussion, is that he is hoping we can wait to do surgery since he stated "yo are quite young still"; which to me means that if it goes badly, I may have a longer period in which to live a life with paralysis.
I am not stressing over this, as it is out of my control and is what it is. I will listen to what he thinks on Friday and will go from there.
Thank you all for listening.
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