Questions for "experienced" incomplete sci folks...

[Amy]

Ok, so I'll find out more about what's causing my sympotms tomorrow after another MRI on my tspine (where the fracture is).  Most days recently, from my ribcage down I've had sensations like I'm being electrocuted...almost constantly, a lot of weekness, balance problems and muscle spasms.  But there are some days I feel stronger than others.  Can anyone share with me their personal stories, experiences and the path this injury took them on?  Thanks, I appreciate all of this and all of you.

Amy

[Gary Anderson]

Hi Amy

You have all my sympathy with the journey you are on. I am incomplete para after a train crash 20 years ago. I am still on my journey. I dont want to go over old ground of how it affected me, etc. Some parts are too painful.

If you search this forum and the previous forum you will find my postings on my injury and how I cope - just.

[Amy]

Hi Gary, it's nice to kind of meet you.  I've read just about all of the posts, so I do know your story and I'm so sorry for all you have been through.  I don't know about you, but the toughest part is the loss...of a lot of things, not just physical.  I was suppose to have my MRI today, thinking I would be ok with it since I've had so many of them...NOPE!!  I totally freaked out in the MRI.  Apparently I have become very claustrophobic.  Unbeknownist to me, the other MRI's were open, so my head wasn't in.  Today's needed to be conventional because my neurosurgeon wants better quality pictures.  I have to reschedule the MRI.  I am (was?) a police officer and was injured in the line of duty.  I'm fortunate because I don't have to rely on my medical insurance, but as with any government system here, there is a LOT of red tape.  Now I can't just call and reschedule...it needs to be approved, then I need to schedule with sedation which can take up to a month...in the mean time, it seems like so many scary things are happening I just want answers.  I'm usually a very positive and upbeat person, but this evening, after not being able to complete the scan, I've just been crying.  I was really looking forward to knowing for sure what the issue is with me and what I have in store...I know I can handle whatever comes my way....I've been through quite a lot in my 48 years...I'll be ok, but I need to know. OH, sorry to have gone on so long about me...I feel like I might just be a mess for the next couple of days!! I'm going to call my neurosurgeon on Monday to see what we can do to make this process faster.  There's always hope, right?

Thanks for your response (someday I'm going to get to Scotland...my father's family was Balentine)
Amy

[Jilly]

Hi Amy, first of all.... theres ALWAYS hope. When something shitty happens to you and you feel like you are as far down as you can get, theres only one way to go.... back up again. Sadly getting back up there takes time and lots of effort! It hasnt been very long since your injury and Im amazed at how well you are doing and how positive your attitude is. Give yourself time. Hiccups like your MRI are going to happen. Treat them just like they are... hiccups. It gets frustrating though doesnt it. Sometimes life is just NOT FAIR!!!!

Please, if things get too much and you need to have a bloody good moan and offload everything to us then do so. Thats part of what we are here for too.  We are good at listening. You dont always have to be brave, and a damn good cry never hurt anyone either! BIG cuddles!!!!!

Hi Gary....

[Amy]

oK now...reading your reply made me cry again   but it was a good kind of cry.  I can't thank all of you enough for your compassion...from complete strangers....it's awesome, so "thank you" seems like a stupid thing to say, but I don't know what else...

Most sincerely,

Amy

[cate]

Hi Amy. I agree with Jilly,  we are on here to help in any way we can, and just listening/reading is some help
If we are not  having the problems ourselves it is because members of our family are, and we do realise what support is needed,  You have been strong so do not beat yourself up, Take a deep breath     and go for it, sure you will get the help you need lets hope it will not take to long, as time  is important.
Best of luck.

[Amy]

Thanks Cate....now I know why you, Jilly and Gary are "hero" members.  I'll be just fine, just needed a moment I guesss   I have rescheduled my MRI for January 8th, they're going to sedate me (heavily I hope ) and do both my neck and back....so everything will be taken care of and hopefully I will have some answers.  I have recently moved into a new home...one without steps....I know I've mentioned my friends before...this weekend they're having a housewarming and sort of Christmas get together at my house, which is AWESOME, and gives me something to not only look forward to, but also to get ready for.....SO, I'd better get ready

I know I say it too much, but really, thanks so very much,

Amy

[Amy]

ok guys...I don't know what to do.  I've noticed that within the past 2 weeks, my abdominal muscles seem to have just given up   I didn't realize how much fat those things held back....yeah, I'm trying to laugh about it, but really....it makes me hate the way I look.  I feel so absolutely ugly it isn't even funny.  I try to work those muscles as much as I can, but the pain in my back prevents too much.  It's also kind of hard for me to breathe at times, especially taking a deep breath---what the hell?  Any suggestions?  I go to physical therapy 3 times a week.

Amy

are any of you on apparalyzed???  I just recently joined there....how come that site is so much more active?

[Gary Anderson]

Hi Amy

I used to be on apprelyzed but have not been there in an age. I always found it to be more active but on the other hand found it to be more USA than  UK.

[Amy]

Hi Gary

I like this site much more...it's easier for me to move around and I think really informative...there seems to be a lot of stuff on the other that I don't really need right now, but is probably great for others.

Well, I just wanted to wish you a VERY Merry Christmas, and hope the New Year brings nothing but goodness and a lot of happiness

Amy

[cate]

Hi Amy , I think you will find both sites very helpful Simon  who comes on here is apparalized and he  Andy seem to have a good relationship,  and keep up with both sites.
  By the way have your had your scan again and how did it go,
?

[Amy]

Hi Cate,

I found out a little after the scans.  The good news is that my spinal cord looks good....which now makes me feel like a fraud being here....anyway, the neurosurgeon thought that maybe the balance issues, headaches, weakness and fatigue in my legs and the numbness and tingling may be a vitamin b12 deficency, so he did labwork.  Everything came back ok, so now I'll see a neurologist because his other thought was peripheral neuropathy.  I see the neurologist on Feb 5th.  I know this sounds crazy, but I bought a pair of Sketcher Shape-Up shoes today....they are amazing, I didn't want to take them off!!!!  After several hours of either walking or standing, usually my back and legs would hurt so much that I would give up and sit down.  After 6 hours of wearing the shoes, the only pain I had in my back was mid-back (where I broke it)..there was absolutely NO low back pain, no headache, my feet didn't hurt....I still had balance issues and the feeling of either being numb or being electrocuted from my ribs down, but I felt great relief after wearing those shoes!!! Funny isn't it???  AND, I walked without using my cane (which probably isn't smart, but it sure felt good)

How have you and your daughter been??

Amy

[Andy]

Amy,

great news about your spinal cord

please don't feel like a fraud being on here,  you are most welcome to use the forum, glad everyone here made you feel so welcome too 

Andy

[cate]

Hi Amy, so glad to hear spinal cord ok. do not feel a fraud your obivously had problems, and still do, so we are here to listen etc. and accept any good news with open arms  So fingers crossed for your next medical, best way to go is up.
Things are going the same with my daughter  but she is doing fine, and enjoying live.  she is busy studying on open uni course has being do that for the last 4 years  studying law,  but she is a hairdresser, and the salon was closed down as her boss went broke,  she has with one of the other staff there reopen the salon  within  month of it closing, so they have been working really hard, to get it up and running, and her partner she has known since school days,  so hopefully it will go well,  she  works with a tilting stool, and her clients are used to the crutches, and also I think have been through many of her operations with  her so that is good. Sometimes finds working very tiring but she is very strong minded 
Determination is such a  strong motive.

[Amy]

Thank you Andy and Cate....I have gotten so much support, and so many of my questions answered here.  It's been a bit of an uncertain ride, as you all well know.  I'm grateful to get the news that I have gotten and will work hard to get whatever feeling and balance back that I can.  I appreciate you all so much.

Cate...I admire both you and your daughter very much...as I do many on this site, but I also feel priviledged to have gotten to know you and your daughter and your stories of strength and determination.  I wish only the best for all of you, and again, thank you so much for being here.

With Respect,
Amy

[cate]

Amy do let us know how your next appointment goes, so pleased about your spinal cord. your other symptons do also sound so familar,  some sort of nerve damage maybe.  Would also suggest you look up BSS. Browns Sequard Syndrome/
My daughter has those same feelings. unfortunately her nerves are damage and her spinal cord is flatten, will not rejuvenate
 So fingers crossed they find your problem  soon and can work on it.

[Amy]

Hi Cate!

I saw the neurologist on Friday.  He said that when I broke my back, blood pooled around my spinal cord, compressing it...causing a spinal cord injury (I'm really not a fraud!! )  He said that the nerves have been damaged, but the good news is that some of the feeling has come back between my ribs and upper thighs and the "electrical" sensations have decreased some in that area too.  He said that's a good sign and may indicate that I will eventually get it all back.  He said that the balance issue is a result of the sensory preseptors in my feet aren't able to communicate with my brain as the nerve that carries that information is damaged and like the other nerves, feels it may come back.  I guess I thought that once nerves were damaged, they were done for good (and that may be the case I guess, we'll just have to wait to see).  I feel very optimistic about the future....even if this doesn't fully resolve, I realize how fortunate I am.  He said it's going to take a very long time, longer than I want, and there isn't anything I can do to make it any faster   He knows me too well!  Thanks so much for your concern, and I will look up BSS...right now!

[Gary Anderson]

Amy

I myself have nerve damage and nerves can regenerate themselves as I know. They grow slowly so it can take sometimes up to 2 years before they regenerate fully. If you read back my posts you will see I have spoken about this before.

[Amy]

Thank you Gary...I'll read on!!!!

Amy

[Jilly]

Hey! Thats great news Amy!

Sorry I havent been here for a while everyone, life is incredibly busy at the moment! In two weeks I will be child free it seems... gulp! Lots to do.....

[Andy]

hey Jilly nice to see you

[Amy]

Hi Jilly!!!!  So very nice to hear from you....I've thought about you often, but figured your life was pretty busy and didn't want to bother you......childless??  Is that a good thing or a not so good thing???  Anyway, I'm glad to hear from you and hope you are doing ok.

Amy

[Jilly]

Believe me at the moment its a good thing! They have just had 3 months on holiday under my feet and Im nearly ready to rip someones head off! Lol!

Hopefully I'll get to catch up with everyone on here soon.

Hi Andy... its good to see you too.

[Gary Anderson]

Nice to see you Jilly and you Andy.
Childless! Well I am nearly 52 and not been in a relationship since you know when (see past postings) have no children and do not regret that.

I believe things happen for a reason you cannot change what has happened and you cannot miss what you never had.

But then I am a doctor who does not undertand why women who are through the menopause want to have IVF to have kids. Doh! I thought that was the idea of the menopause.

[Amy]

Haha Jilly, I know what you mean about wanting to rip their heads off!!!!  Thank goodness I only have one, but he's been pretty sick recently so spending a lot of time home with me(no big deal, we go through it often enough) but I'd like to rip his head off too!!!!!  Here in the States, they frown on that sort of thing....especially when their sort of sick  

Nice to hear from what I consider my little group of people: Jilly, Gary, Cate and Andy!!!  Best of everything to all of you....it looks like I might return to full duty as a police officer withing the next several months...I'm really excited.

Amy