Saw my neuro/interesting comment

[cindy]

I went to see my neuro today because of ongoing muscle rigidity since my surgery in Aug 2010. He had an interesting comment. He said that there have been no studies of the long term recoveries of people with SCTs, so that it is not really known how much residual issues people have after surgery. Obviously it's varied, as one can tell from reading this board, but he said he wishes there would be a study of it.
I was curious because for the first year after my surgery I felt absolutely great and thought I was 100% but at about 15 months I started having muscle rigidity and pain. I asked him why so long after surgery and he said that a lot of people who have had symptoms for many years feel so many fewer symptoms after surgery that they really don't notice some of the stuff left over, and that along with scar tissue can cause symptoms later. He said I would probably stay like I am, somewhat damaged, forever now. But, I will take it. I feel better than before the surgery.
Anyway I thought his comment on no real studies on long term surgery residuals was interesting. Maybe we should try to encourage it with some of our medical contacts.

[Todd]

however, given that the SCT resulted in spinal cord trauma/injury, there are multiple studies on how people with SCIs recover over time. I would think there would be some relatibility there.

[Tmasgio]

my own interpretation is that my brain has adjusted. I dont remember or even recall after 5 years what it felt like before surgery. I find that my body and life adjusted over time and that my level of awareness is not focused on how I feel unless the pain increases. To me what I have now is normal and if I noticed any changes it has been very gradual to not be readily noticed.

[cindy]

Tmasgio: Yes, that's the way I feel too. After all those years of going slowly downhill (maybe 20 years or more my neurologist said) I can't remember normal, and I am beginning to forget what I felt like before surgery too; just what I feel like now.
Todd: Yeah, I was surprised that he said that. He was talking about "long term" studies more than resulting injury I guess. He said neurosurgeons tend not to follow their patients very long after surgery if they seemed to come out well after a year. I think he was talking more about people with seemingly good initial outcomes who several years later seem to get problems.

[Todd]

it's quite rare, our little ailment. however, I am disturbed by the sheer volume of new people hitting this site with SCTs. I know 2 children within a mile of one another who dealt with brain tumors, 1 is dead and was the best friend of my middle child, the other is fighting for his life and is the best friend of my youngest child.

I am doing some interesting research on the food we eat in the US. scary stuff involving genetically modified food supplies.

Due to a milk allergy I picked up late in life, I spent years drinking soy milk. soy is the worst genetically modified substance infiltrating nearly all of our food. Docs tell cancer patience to steer clear of soy, why? because it causes tumors.

I digress

[WhiteAngel]

hey Todd, i wonder too about mobile phones or (cell phones in the US) have to do with brain tumours

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[cargette]

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