68 replies to this topic

[maisy1996]

hellooooooo
right so...
im T2 complete for like 2 years now. a while back well a few months i had trouble with my fingers going numb and what not, had tests blah blah blah, and the doctors found swelling around my spinal cord (c7-8) it went on for a little whileand got worse now i have pretty much zilch control of my fingers. right me baffling on what im asking is it possible that the swelling has always ben there and the doctors jst didnt notice.?
what im confused about is am i still T2 complete or what?

maisy

[Apparelyzed]

Did you have an MRI to see the soft tissue around the spinal cord to give any further explanation?

Simon.

[maisy1996]

yeah i had 3 MRI scans god knows why i had that many! there not sure whether the swelling hasd always been there since my accident and just got worse over time or..something else has caused it

[Apparelyzed]

If your neurology is degrading, then action needs to be taken.

Did you get the scan done at your spinal unit, or at least have the MRI results reviewed by your SCI Consultant?

If not, get refered back to your spinal unit, and get the scans looked at by someone with SCI experience.

If you did get the scans reviewed by your SCI consultant, make another appointment, and get him to explain exactly what is happening, and why the deterioration has taken place, and more importantly, what he intends to do to stabalise the deterioration.

This is something which needs addressing before any further neurological damage takes place.

Regards

Simon.

[maisy1996]

i saw the a doctor at my local hospital who specialises in sci but yes your probly right about getting refered back to my sci unit. thank you

tbh with you i really dont wanna know what actions gonna be taken, :/ operations 0_O

[Iain]

maisy1996, on 27 October 2010 - 02:20 PM, said:

i saw the a doctor at my local hospital who specialises in sci but yes your probly right about getting refered back to my sci unit. thank you

tbh with you i really dont wanna know what actions gonna be taken, :/ operations 0_O

Maisy,

As one of those who baffle you, I can but agree with Simon's comment that deteriorating neurology needs urgent assessment

Iain
(T3/T4 for 3y and ex-GP)

[maisy1996]

Iain, on 27 October 2010 - 06:02 PM, said:

maisy1996, on 27 October 2010 - 02:20 PM, said:

i saw the a doctor at my local hospital who specialises in sci but yes your probly right about getting refered back to my sci unit. thank you

tbh with you i really dont wanna know what actions gonna be taken, :/ operations 0_O

Maisy,

As one of those who baffle you, I can but agree with Simon's comment that deteriorating neurology needs urgent assessment

Iain
(T3/T4 for 3y and ex-GP)

thanks for the reply and yes i agree i have an appointment arranged with the sci unit tomorrow 9am!
and what"baffles" me about these baffleing doctors is they wont tell me whether i would still be T2 or C7 ish :/

[greybeard]

maisy1996, on 27 October 2010 - 06:55 PM, said:

thanks for the reply and yes i agree i have an appointment arranged with the sci unit tomorrow 9am!
and what"baffles" me about these baffleing doctors is they wont tell me whether i would still be T2 or C7 ish :/

Hi Maisy,

Does it really matter what's written up in your notes?

What really is important is that the docs all agree on the extent of your injury, that they get you treated promptly by the people best able to fix you, and that you make the most of the ability you retain or recover by working hard.

Good luck for the morning.

[maisy1996]

after yet another MRI they found a mass of tissure/cyst whatever they wanna call it. they said this sort of thing is called a syrinx i dno what the really long word was that they used. it gets bigger and bigger and they said that it was caused by the trauma of my accident, then it just started to get bigger and now its got too big. The doctors said that its too big to drain so they have got to operate to remove it, im booked in for monday; me + operations omg so scared. lets hope it goes okay

i thought i would let you guys know that i wont be online for a while after monday so take care all

maisy

[Iain]

Maisie,

A syrinx is what was going though my mind from your description. Good luck!!

Iain

[Apparelyzed]

Yeah, Syringomyelia was on my mind as well, as I have a non progressive post trauma syrinx in my cervical cord.

Did the doctor say what he was going to do, ie, maybe add a shunt to drain the syrinx?

Simon.

[dangerousdave]

OK I am no doctor, but I do know my chord
Syrinx, cist, is a thin skin bubble of water growing in or on the chord. This they tend to drain. It is not a fiberous growth.
A fiberous growth sounds more like a tether issue, which I have had operated on 3 times so far. At the time of surgery they also tried to locate these mysterious syrinx that shows up on the MRI but are impossable to find.

Thats my experiance
So I think your surgeon was trying to explain a tethered chord

Hope all goes well my friend

[Smileyblue]

I'm glad to hear they've put a finger on the problem, and are well on their way to resolving it.. Good luck Maisy.. Will keep you in mind on Monday and wishing you a speedy recovery.. ;-)

[Izziwhizzi]

Good luck Maisy!

Thats what I had mentioned to you on chat the other day. So glad they are going to sort it as a matter of urgency.

Take care, deep breaths, and try to think of happy thoughts as they put you under!!!

Izzi xxx

[ajl338]

Just thought i would say hello to a local. I'm also in Surrey UK, I didnt think anyone else lived in surrey, I'm in cranleigh. Good luck with getting things sorted


ann

[zena]

maisy1996, on 28 October 2010 - 03:51 PM, said:

after yet another MRI they found a mass of tissure/cyst whatever they wanna call it. they said this sort of thing is called a syrinx i dno what the really long word was that they used. it gets bigger and bigger and they said that it was caused by the trauma of my accident, then it just started to get bigger and now its got too big. The doctors said that its too big to drain so they have got to operate to remove it, im booked in for monday; me + operations omg so scared. lets hope it goes okay

i thought i would let you guys know that i wont be online for a while after monday so take care all

maisy

Good luck Maisy you are in my thoughts I hope things go as planned on Monday and I look forward to hearing how you are doing asap. Keep your chin up.x

[dangerousdave]

Good luck Maisy
Enjoy your R and R

[Angela250153]

From another almost Surrey person I hope all goes well Maisy.

Hope you got someone bringing you some decent food.

Edited by Angela250153, 31 October 2010 - 03:25 PM.

[Ches]

Poor Maisy, sorry to hear about your ordeal.. Wishing you the best

[quadinva]

Good Luck Maisy! Folks in the States are thinking about ya

[knightrider]

Wishing you all the best Maisy, poor thing. Rest well and see you back on here soon.

[Doodle]

Aww Maisy I missed this post!

Hope it all goes well for you!! Speedy recovery wishes coming your way!

[Tinbasher]

AWW Maisey sorry to hear youre back on hospital food!

I hope you are already feeling better and back with us soon.

Lots of love.

Tin

[jack_1]

not like your a quad or anything so why you moaning, yeah u may have to in hospital but hello!! theres people worse off, people on her that dont need you feeling sorry for yourself and askiing a bunch of questions that we dont know and probably dont care about! kids these days, ugh!

[Apparelyzed]

Jack,

I don't know if you're aware of the operation she's undergone, but there is a risk of increasing her level of lesion.

It doesn't matter what your level of injury is, any further potential loss is a matter for concern.

Simon.

[jack_1]

yes simon i have previously read the post but she should be greatful with what she has got! i guess im the only one that feels this way (highly doubt that i am theony one) SO what is so bad about this operation and maybe being greatful and replying to her replys has never crossed her mind

[jenny407]

Hi Maisy, I left you a comment on your page. I just recently saw this. I do hope all goes well - keeping my fingers crossed.

Jack: no comment. I leave that to others.

[Apparelyzed]

jack_1, on 05 November 2010 - 06:32 PM, said:

yes simon i have previously read the post but she should be greatful with what she has got! i guess im the only one that feels this way (highly doubt that i am theony one) SO what is so bad about this operation and maybe being greatful and replying to her replys has never crossed her mind

A. It could increase the level of her paralysis.

B. She can't reply because she's in hospital.

C. I don't recall her complaining above about being a T2, just being concerned over the degeneration of her neurology.

Simon

[Wheelsonfire]

Once upon a time, a long long time ago, I knew a Jack.

Didn't like him much to be honest, thought he was a bit of a tit.




Sorry folks, for some unknown reason that just came to me.

To all the Quads on here, bet you wake each morning and thank god/luck that you don't have cancer.....<------------ psst,analogy!!

To the OP-hang in there.

Signed

Very lucky to be only a t8

[rue2you]

Maisy - have been praying for you! Hope you are doing okay! Looking forward to your updates as soon as you are well enough!!

Jack - never mind.