[pinkcloud]

hi all

ok then.....went to neuro rehab and saw a lovely consultant who I rank high up there in the caring stakes:

Legs that go numb, tingling, stabbing in bottom of feet, bladder and bowel - its neurogenic pain.

Tight band and pain in left rib area and trouble carrying stuff and lifting me left arm - he saw the muscles that were having a spasm party in me back. He said its me brain still thinking it needs to protect the spinal cord like it did for them two years i was left in agony before it was diagnosed and operated on - baclofen

Pain standing and sitting - neuropathic pain from the cord that was damaged from compression - amitriptylin and butran patches

AD (yeap I started to have ad in there) - nifedipine

BP 101/61 pulse 91

Wants me off lyrica as prefers amitriptylin - and this means me weight will also fall off. Also hopes this will reduce lidocaine patches. Yipee He said it wont take all the pain away - but i will get more comfortable. Hopefully this will work and wont need injections.

[Soryfam]

Thanks for the update. I have some of the same symptoms you do, and the doctor's ideas are interesting. Hope the new meds help.

Sandy

[pinkcloud]

Soryfam, on 21 September 2010 - 12:56 AM, said:

Hi Sandy - I will be chatting to me gp before taking drugs - I aint gonna be a space cadet - I rather learn to live with it....

Also this guy is involved with professional horse riders whom suffer the types of serious nasty falls I have - so he is an expert in the area. I trust this guy. Also on test with scraping the bottom of the feet, my leftfoot hardly moved on hard scrape - right foot jumped liked a firework. I lost all feeling in both feet before the operation so I see this as progress, meself. not sure what they do - they keep quiet and quiet is good for me.

Although the left one did have more feeling at first.... ahh well, I can walk.. that will do

This post has been edited by pinkcloud: 21 September 2010 - 09:20 AM

[jenny407]

pinkcloud: I wish you all the best. Hopefully everything works well for you.

[pinkcloud]

[quote name='jenny407' timestamp='1285061584' post='183770']

Thanks Jenny

[wriggley]

hey sorry for joining this one late but i have a lot of the pain you complain of and im a T incomplete too

[pinkcloud]

[quote name='wriggley' timestamp='1285644001' post='185088']

Hey wriggley

Nice to meet you. I posted this out especially for t-spine as it seems to be such a mystery and I hardly found anything out else there on the net. Anything you think will help or if you just fancy like having a good old complain about it - I be more than happy to read. Thanks for posting

[wriggley]

thanks pink

us girlies are in a minority anyway

though i did have something well funny happen the other night. I tend to be quite prone to spasms but i also have a type of epilepsy that makes me twitch quite a lot.

so im lying with my legs across the other half watching a horror movie on the sofa. Well it gets to a scarey and i twitch. Scared the wotsit out of him and the two dogs. practically had to scrape him of the ceiling. was absolutely hilarious!!!

[pinkcloud]

[quote name='wriggley' timestamp='1285718036' post='185296']


Ahhhh the magic powers we hold hey? Good to see they have their uses

[pinkcloud]

Right-ey then. Update for anyone who had thoracic cord compression releived by surgery but was left with sci and is a walker

My physio is currently massaging me spine area - and I cry out like a baby - but its working. I dont know the medical words for it and dont want to know. Yet she explained its all about nerves - that its like the nerves are sending signals to ten places instead of one. Thus the pain. Yet its not so much the t7/8 area thats so bad - this pulling sensation in t7/8 only comes on afer lots of walking and sitting up-right, its just a 'the worst ever bad 'stitch feeling' just above my left side on the rib area that troubles me and just below the oepration site. This wont go away and when massaged, me right leg spasms up. ' Of course the tight band still lives with me permanently unless I lay down.

The Lidocaine are good for me, but she feels that this is numbing the area for me and me own body needs to start repairing itself naturally. It seems that its just the skin sensitivity problems and spasms that are stopping me progress. Massage is working and I am off Baclofen. I stress only go to a trusted physio for this - I doubt much you would get this on the NHS and I stress only go to a physio experienced in neuro-rehab. NHS normal physios would not dare touch me because of it being thoracic.

So I have learnt and worked on a few things - I spread me legs wide apart when getting out cars,and reaching down - I can nearly do the splits - its takes some hard work to get this muscle tone and strength going but it sure takes the strain from the thoracic spine rocking and hurting by the twisting and bending movements. I must say I was a horse rider before this so that helps me.

I also stand with legs apart when standing - so I stand like a bloke. I also if I have to sit on a normal chair sit with legs wide apart straddled as this too takes the pressure of the spine. Of course I make sure i wear underwear on this occasion

My right side now feels weaker - yet its because I am beginning to use the strength of the left side - and this feels alien to my body as i avoided using it for two years. This scared me for a while as the symptoms on the right side - where the same as what happened on the left side with the cord compression. But its just me brain signals getting confused.

I really am beginning to see hope for the future. And am beginning to get a little step further towards getting out of this hell-ish pain. Just that bit of relief has my eyes shining real bright again. I am grateful for just even a tiny bit more relief I hope all yours do too

This post has been edited by pinkcloud: 01 October 2010 - 11:12 AM

[aainme]

I am so glad you are getting some pain relief. I really find taking a muscle relaxer only when my spasms are at night when i lie down and try and sleep, and pain medication 3 x a day.....I was worried about the pain meds, but they are the only way i can get up and function with my walker and cane. I sure have learned about pain and pain control,when my patients have pain i will know exactly where they are coming from. I wonder how our Doctors would act if they had the pains that we experience every day....Could you tell me pink cloud, if you get spasms from AD? I had some of the worse spasms yesterday, they were so tight in my torso that they took my breath away.... I love this site and the people here THANKS

[pinkcloud]

Hi aainme - AD well I have some good news to share- in some ways I think this is:

1. Either getting better or fading away (if that even happens)
2. If I am just getting so used to it because its gone on for so long now I am not scared and I deal with it right away.
3. Whether it was some kind of weird spinal shock?

Yeah I still get headaches, feels like me eyes are going to burst out me head, me heads gonna explode, sweat etc etc - but not in All ways like I used too. huuummm. Puzzel. And yes I do - the spasm cause AD I reckon. But I aint a medic so dont quote me on this.

Spasms - they get worse when I am due on at the time of the month, in which time I feel like I am going to simply pass out and die. I am getting even better at hiding this though in which case,which means that emotionally I am dealing with it better. I quickly go and find somewhere to sit it out and distract me mind.

The ones around t7/8 - thats where it feels like me torso is being crushed to death by a metal band- ahhhhh this comes on after sitting, walking too much, wearing a bra for too long, standing still on the spot for too long (i.e more than a minute)..... it just arrives whenever it feels like it. It seems like the band of pain has taken it personally that i dont want it in me life and appears just when i really dont want it too, like some kind of creepy stalker - to really pee me off

When it comes on real bad it brings me to a grinding halt - yet believe it or not - i actually find that breathing in really really deeply helps. I did this the other day on the bus - when tears began to stream down me face and i thought 'oh no, not in public on a bus'. Some people were sitting near me and I said 'its ok i am not sad its just the shock makes tears fall down me face. And I am not going to give birth with me heavy breathing, I have just got back ache'. In which I turned to the lady next to me and said 'excuse me has me make up all ran down me face?' and she said 'yes'. Ahhh great walking around town without me face on then, to add insult to injury I was thinking.

I am so glad that you are turning this pain into a positive and thinking about your patients. Yes I did once put it too a few doctors about how they would feel if they had this sort of pain and me answer was 'yes that would be good but they wouldnt be working would they'. I shut up quickly before something rather rude came out - I speak from me heart not me mind - and it would not have been too pleasent. To say the least. I am so glad for this reason I do not work at the moment and especially in healthcare. I would have a zero tolerence policy for clueless medical staff.

This post has been edited by pinkcloud: 02 October 2010 - 07:55 PM

[aainme]

This injury is the damnest thing.I told you how i was having severe body cramps,last night i had to get up and pee three times,that is unusual.....well today i went to therapy, i thought i would stop and use the bathroom before i went in and i really did not feel like i had to go....i touched the handle of the door and peed all over myself...WTF....there are just so many things that are involved with this kind of injury it becomes overwhelming....just a short rant before bed....this is not something that comes up in a normal conversation...thank God i have you all....

[pinkcloud]

[quote name='aainme' timestamp='1286246428' post='186370']

Hey aainme I get that too with the bladder - i just dont feel when I need to go. Again I accepted it and now I just get on with it.The danger with me is that i could wait ten hours to use the toilet and then it dosnt want to come out yet of course stabbing in the feet and what i am told is ad (banging headache, spasms, sweating etc happens and then I do feel in trouble, I awake to it every morning) brings me not to do this except of course at night time.

Never ever leave the bladder for more than four hours is what the consultant told me. As this is dangerous. When you use the bladder - empty, and put on a tap, the tap of running water will send messages to the brain - then you may find more comes out. Now this at first caused a problem as when I visited a friend and she had a fish tank, man I felt like i needed to go to the toilet all the time and i didnt. I had to leave the room lol. The same as when the shower was running - pop off goes me brain and i had to sit on the toilet. I was meant to use a catheter and i dont. And neither do i now get utis. I hate catheters and this is what pushed me to re-train my bladder. Its possible if you find a way how. If the body is capable - I am not pretending it will help every one but its something that works for me.

Me ultimate goal is to be able to drive and lead a normal life and go to work. I am just getting to terms with this life at home and am getting comfortable. To work as well as look after children, a home....etc whow that seems overwhelming. And a step yet I am not ready to take,,,,,,however, i now see its possible one day.

Try and get the medication sorted. Lyrica, Diclofenac and panadol ( not normal paracetamol) works so great - espeically the panadol or paracetamol for nerve pain which I have to take every four hours. I can tell the time by my medication. Spasms - i just deep breath thorough them. I feel them spasms pulsing in me back and legs when i am sitting down. And thats very bearable. If someone asked me to sit in a computer chair for more than an hour i would pass out from the pain. I dropped the baclofen as it was knocking me about and yes it was nice but it also bought on other spasms. I have not touched the morpMhine patches yet.

Keep strong aainme, I know this sounds mad but I am not so scared of whats happening no more. I have control as long as I listen to me body. And I accept this is what I have to cope with as me body heals, me bodys confused, sends wrong messages yet its tyring its best to heal and work. And for the first time ever, I have got me head around this and am grateful for all the pains as it means i am getting better in some way. I may need to change mind tactics in time to come and thats ok, I will when the time arrives...try and find something that you can do and push push push on thorough at your own pace. If I had not had the mental courage to sit there sobbing as my physio massaged the spine area, took the courage to start using the left side..... I would still be where I was when I joined the forum. Until then emotional support for you here in lots. And thats a great place to start.

If you managed to read thorough all this I am very surprised yet I felt all of this was important stuff to cover.
Hugs to you
Me hearts with you so much. I understand completely what it is you are going thorough and thank you for sharing.

This post has been edited by pinkcloud: 05 October 2010 - 11:19 AM

[aainme]

Thanks Pink cloud, I usually get those bad body spasms in the morning as soon as I move one muscle. I have trained my body now, not to move in the night time, I can not sleep on my side because my right leg gets to feeling like it weighs 1000 pounds. when I get up I take 2 pain pills the sit quietly for one hour. Then I get ready for work...I still work 20 hrs a week to keep my insurance. It was bad enough when i could not control my passing gas, now i have to worry that I might pee on my self again....My mom suggested a brief like a depends panty so if it happened at work at least it would not cause a big problem,,,,,,,It is not a good think to pee on my self at the hospital....lol.....do you have bad lower back pain? I also get the stabbing pains in my breasts....even the pain pills don't touch that pain.....i think i may take the advice of another member and go to a neurologist.... they may know more that my primany care doctor.....thanks again for all the support i get from here...the experience of the members is so valuable ..........hugs laura

[pinkcloud]

aainme, on 05 October 2010 - 03:27 PM, said:

Thanks Pink cloud, I usually get those bad body spasms in the morning as soon as I move one muscle. I have trained my body now, not to move in the night time, I can not sleep on my side because my right leg gets to feeling like it weighs 1000 pounds. when I get up I take 2 pain pills the sit quietly for one hour. Then I get ready for work...I still work 20 hrs a week to keep my insurance. It was bad enough when i could not control my passing gas, now i have to worry that I might pee on my self again....My mom suggested a brief like a depends panty so if it happened at work at least it would not cause a big problem,,,,,,,It is not a good think to pee on my self at the hospital....lol.....do you have bad lower back pain? I also get the stabbing pains in my breasts....even the pain pills don't touch that pain.....i think i may take the advice of another member and go to a neurologist.... they may know more that my primany care doctor.....thanks again for all the support i get from here...the experience of the members is so valuable ..........hugs laura

Hi Laura

Yes, the pains are to do with the tight band of pain and are one of the first tell tale signs of a cord compression there/nerve damage. It can also feel like you are having a heart attack.

Lower back pain, in my case anyway is secondary pain to the operation site and cord injury. I dont think that any pain killers can get rid of these pains, its all too much nerve damage. Yet the doctors can try and make you comfortable.

Thats what I have been told by all the specialists - and why I have learnt to deal with the pain more in me mind now so that it is no longer a dominating force. And after what pain we been thorough, comfortable is good once you can get it. And life becomes sweet again

[isobar]

Hi pinkcloud










                                       I have a TENS/ FES machine it really helps with pain and spasms when used on a regular basis. There are various models with two or more electrodes you attach to the pain area..... it really works. The one i have has six channels.... each channel controls two electrodes an instruction booklet is included. The TENS function is for chronic pain... the first time i used it i had no spasms for two days. I use it on my lower limbs on ductors, quads, hamstrings and calves. I also use a Pedal - In - Place Cycle and a  Bowflex it stretches my quads and hamstrings.  Salonpas pain patches work well.... three rubs work well Herbal Heat , Karma Sutra  Herbal Healing Blend and Olbas Therapeutic Herbal Bath Therapy. A massager with heat control and a aqua massager which uses a wet cloth placed next to a heated pad in a sack... the heated pad has a timer. This may seem like alot but these things have helped me control and manage pain. I hope this is helpful to you..  M y injury isn't due to compression.

[pinkcloud]

isobar, on 06 October 2010 - 04:52 AM, said:

Ahhh thanks isobar, heat sure does work and i will look into these rubs.

Physio today. More deep tissue massage that will enable me to bend and twist..not only did this lady get me walking, now she makes me sob yet again like a baby but whow i felt the back release and she brings me life. Thats the awful 'runners stitch type pain' has decreased so much.i came off that table feeling better than i ever have for so long i had blocked that feeling as never thought it was possible again. Heat it is. And tens.

She explained most in my condition would lay down and take to a chair. So if any of you are it dosnt matter, but keep hoping ok. Progress can happen if the body allows, that is.

I keep you all posted with isobars help and see how much this works










                                       I have a TENS/ FES machine it really helps with pain and spasms when used on a regular basis. There are various models with two or more electrodes you attach to the pain area..... it really works. The one i have has six channels.... each channel controls two electrodes an instruction booklet is included. The TENS function is for chronic pain... the first time i used it i had no spasms for two days. I use it on my lower limbs on ductors, quads, hamstrings and calves. I also use a Pedal - In - Place Cycle and a  Bowflex it stretches my quads and hamstrings.  Salonpas pain patches work well.... three rubs work well Herbal Heat , Karma Sutra  Herbal Healing Blend and Olbas Therapeutic Herbal Bath Therapy. A massager with heat control and a aqua massager which uses a wet cloth placed next to a heated pad in a sack... the heated pad has a timer. This may seem like alot but these things have helped me control and manage pain. I hope this is helpful to you..  M y injury isn't due to compression.

[pinkcloud]

OOOOOOOOOOOOOOOO forgot to say, the left groin pain that leads to sciatica down the groin - comes from that left area under the 'stitch pain' ribs so any of you who have this - all from this referred lower neuropathic pain - puzzle of all weirdness is resolving

Isobar heats reaaly eases some things and i is a going to be taking me tens down to physio next week

[ThomasR]

I don't want to derail your thread, but since the last post is from october I thought I could ask you guys a question. I am T4 incomplete as far as I know. I cannot move my legs at all, but do you know if I could use a tens to build up the muscles in my legs? I mean just for aesthetical reasons. I don't expect to be able to move them again.

[pinkcloud]

ThomasR, on 27 January 2011 - 04:27 PM, said:

I don't want to derail your thread, but since the last post is from october I thought I could ask you guys a question. I am T4 incomplete as far as I know. I cannot move my legs at all, but do you know if I could use a tens to build up the muscles in my legs? I mean just for aesthetical reasons. I don't expect to be able to move them again.

i am a thoracic 'walker' so have no idea am sorry

[Edinburgh Colin]

I'm a T4 with some movement on my left side and used to use the FES kit when I was still in rehab. I have not used a Tens machine but can't see why it would not help after all it effectively fires the muscles which will work them, encourage blood flow and that can't be bad

One of the guys and girls on here who do a lot of gym and body building work may know better about the physiology of muscles and how they respond to stimulus. Wheels on Fire is one who comes to mind, he's pretty active and a masochist I think (joking, in case Bev sees this), if your reading Woofy any comments?

[ThomasR]

Edinburgh Colin, on 01 February 2011 - 02:20 PM, said:

I'm a T4 with some movement on my left side and used to use the FES kit when I was still in rehab. I have not used a Tens machine but can't see why it would not help after all it effectively fires the muscles which will work them, encourage blood flow and that can't be bad

One of the guys and girls on here who do a lot of gym and body building work may know better about the physiology of muscles and how they respond to stimulus. Wheels on Fire is one who comes to mind, he's pretty active and a masochist I think (joking, in case Bev sees this), if your reading Woofy any comments?

Thanks for your reply. My friend who is a chiropractor and the guy from the gym I go to said that theoretically you can stimulate muscles passively with a TENS. But then again they don't know very much about disabilities and stuff like that. But maybe I better start a separtate thread. Thanks anyways.

[Wheelsonfire]

Edinburgh Colin, on 01 February 2011 - 02:20 PM, said:

I'm a T4 with some movement on my left side and used to use the FES kit when I was still in rehab. I have not used a Tens machine but can't see why it would not help after all it effectively fires the muscles which will work them, encourage blood flow and that can't be bad

One of the guys and girls on here who do a lot of gym and body building work may know better about the physiology of muscles and how they respond to stimulus. Wheels on Fire is one who comes to mind, he's pretty active and a masochist I think (joking, in case Bev sees this), if your reading Woofy any comments?

Build muscle, no.
You can keep tone with a unit.
Over a vast time, there will be slight gain but diet is essential.

These units merely contract and release the muscle, to build muscle, the muscle needs to be pushed/ripped for growth.

Big difference in toning muscle and building muscle.
If one is fresh to the chair, it's a good idea to have one of these units to keep tone, nothing worse to see some dude in a chair who suffers from chick leg syndrome which can go hand in hand with SCI.

So, to conclude, complete to incompletes, the units are a good idea to keep memory in the muscle, tone.

As to being a masochist, um, we all have our cross to bare

This post has been edited by Wheelsonfire: 03 February 2011 - 08:52 PM