5 replies to this topic

[pinkangel]

Hello, sorry i havent posted in a while, just had so much going on..finally got my new wheelchair now..after 9 weeks without one!

Well today I really don’t know what to say to be honest, its back to the old saying of “why me” I really wish I knew.

had my long awaited appointment at the hospital for my current spinal problems.
Consultant was very nice, so understanding and let me talk about it all and how its affecting me, which was a first. I have been preparing for the “its psychological” for the past few weeks, seeing as that is what ive been fobbed off with for many years.

On examination the consultant could certinaly feel the spasms in my spine, the last 2 days its spasming around my neck and he felt it
He then checked out my spine and knew something was wrong he tried to straighnten my spine but it just wouldnt move.
He then said due to my lack of mobility because of the hemiplegia, it has pushed everything out, so the muscles are no longer working and i now have C shaped spine, which it shouldn’t be.which is explaining the spasms im suffering each day

so ive now got to undergo physio with the community neurological team and keep on with the painkillers im on, as due to my allergies to painkillers & seizures he wants to try physio first as painkillers isnt curing the problem

Hes hoping i will get my crutches back eventually but said due to the hemiplegia life is going to continue the way it is now, its just a case of dealing with it with the right guidance and long term care.

For me this has been a long hard road, for nearly 4 years ive had these spasms and no dr would do anything, and only since being taken to A&E have I been taken seriously and the fact its not “psychological” its my spine thats wrong.

So hopefully this will be the start of my next stage of treatment & managing my disability.

then to add to all that
Over the last few months, my alopecia has been returning, with it falling out in strands and thinning out, I have been using a special shampoo and taking sea kelp tablets to try and delay the fall blown hair loss.

That decided to end today, after I washed it, and lost the back of my head hair leaving a big bald patch.
So took the choice of having it shaved off, going through the emotional stress of watching it fall out day & night just isn’t worth it, been here before and pro-longing the inevitable. I would rather face it.
So its now back to bandanas & hats and undergo steroid topical treatment for the months ahead.

feeling rather drained at the moment really

cat

[cate]

Hi Cat
Am pleased that you now have some answers and you know it was not all in your mind. How good to find a doctor who listened to you, that must have felt good. Sorry about your hairloss, not surprising after all you have gone through, Would you not feel comfortable with a wig, some are very good now. Some people feel they do not want one, what ever makes you feel comfortable. I hope things are now looking up for you. Best of luck
Cate

[pinkangel]

hiya,

havent really gone down the wig route, been mainly on hats, headscarfs and bandanas]

went to see a private physio yesterday absolutly lovely physio who specialies in neurological conditions, did a health history and was left stunned to why this has been left nearly 4 years - as drs been telling the pain was "psychological" only ending up in ambulance in a&e in july has realised something differnt

he did a spinal exam, and immediatly found the curve, then put some masage oil on my back to find where the pressure is, turns out my whole spine is stuck, he then could feel the spasms going through and was shocked to say the least.

when i try to bend to pick something off the floor my back wont bend so end up like a teapot shape, hes said thats becuase thats where the curve has formed so i dont bend in the middle.

hes wanting me fitted with a spinal back brace, got a Donjoy BOA duel TLSO coming hopefully on monday and got to see him next friday as he wants to check out what state my neck is in and to then start with some excersies

also got to have my tens machine 12 hours a day to use it every half hour every hour, so hopefully they will bring the painkiller use down
i know theres a seizure risk involved with that, but im willing to take that chance..got nothing to lose now

[cate]

Hi. I am glad things are moving for you, and the Donjay braces are v. good. My daughter had one for her knee, different accident to sci. Firstly they tried all other ones, not a lot of help. then suddenly in the right placve and the right time, the hosipital splint man decided that what was needed, and that made such a difference to her, but she had been yhears without that help. She has since had the knee re-operated on for the 3rd time, different hospital and consultant, so she only needs to use it rarely, but it is still there for those times. So Good luck with it.
With regard to wigs, Trevor Sorbie who is a top hairdresser, does a service for cancer patients where he remodels the wigs for each patient. it has started it using hairdressers affliated to the scheme. My daughter is an hairtechnician. I will talk to her about them see what se comes up with. She is not on this site, accepts that she is disabled, leaves it to me find out about different things. She still works as a hairdress 4 days a week, and is also studing. as it is difficult for her, she has a tilting stool, to balance on whilst working, and only uses one crutch in the salon. She used to teach the technical stuff, that meant driving to different colleges and sdalons, had the car crash found travelling to hard, so now works local. Sorry to have rambled, thought I would give a bit of background. and if you would like me to. I will talk to her about wigs. You may prefer not to go down that route, but they do look v, good now adays.
Best of luck with all your other treatment
Cate

[pinkangel]

well today had my brace fitted, certinaly going to take some getting used to. here it is

http://www.facebook....mp;id=710081834

[ems]

I hope it works well for you Looking good standing!!!!
We're of to devon in a week, but we were wondering as your so close to us whether or not you would like to meet up sometime/somewhere? I promise I won't let my puppy push you over <grin>. We can have our own Mini-Meet! LOL

Sorry, rude of me, ahem... anyone else intrested in meeting up? Open offer ;)

Emma.

Edited by ems, 13 October 2008 - 03:34 PM.