25 replies to this topic

[A trophy guy]

This thread is directed towards those who have lost sensation due to their spinal-cord injuries. At first, I figured I'd put it in the "Complete Spinal-Cord Injuries"-section since that would be the group most predominantely associated with total/severe loss of sensation. However, many factors, or symptoms, are associated with being a "complete" or "incomplete" injury that don't ultimately match the specific injury of the person. So I still am a bit fuzzy as to what these terms actually mean. Anyway, so I just posted in this forum for all...

What I'd like to know is, assuming no other physical changes, how do you imagine your life would improve if you regained full sensation throughout your body? When I say "assuming no other physical changes", I mean the sensation comes with no corresponding movement or sexual/bladder function, etc. I'd like to know in what areas of your life or with what specific functions would you see improvement? What would be the advantages, if any, to being paralyzed just as you are now only with the ability to feel everything?

[brockit79]

hmm, interesting question. With full sensation and possessing proprioception, the perception of where your limbs are in space and time, I would imagine it would aid transfers because if foot is placed in a certain position and thus a better, more solid, base could, maybe, help with transfers???

Also having full sensation would help to prevent skin/pressure related injuries/wounds.

I would imagine that full sensation in paralysed limbs would eradicate neuropathic pain; based on the theory that the pain occurs in the brain because it can not connect to the paralysed parts of the body.

If I had full sensation I would feel more hopeful about possible future treatments because my spinal cord would not be totally crushed/severed. So physically and mentally it would be pretty good. I'd love to feel that my legs belong to my body in the way that they used to without feeling as though I'm plugged in to the mains.

Broc

to add this is just what I imagine the benefits would be seeing as I'm completely complete

Edited by brockit79, 08 February 2012 - 08:13 AM.

[ClaraTaylor]

I know I'm an incomplete but I have lost a lot of sensation (and other sensation is altered) and you know what I never realised I missed it so much until now. Of course mine is nothing compared to a completely complete and I don't think I could even start to imagine what that must be like.

BUT aside from all the practical things that the wonderful Brockit has already mentioned the one thing I would benefit from is the emotional happiness of having as simple cuddle from someone you love and being able to feel all of it.

[Apparelyzed]

Although I'm C5/6 motor complete, I'm also sensory incomplete.

I don't have what is defined as "Normal" sensation, but I can feel touch and deep pain all over my body.

What I can't feel is light pain and temperature. My proprioception is also hit and miss, mostly miss!

The advantages of my sensation, are that I can tell when pressure is starting to cause a problem, the area becomes sore with a burning sensation. This allows me to weight shift to prevent pressure sores. The other advantage is obviously when being intimate in a relationship.

There is a downside to being a Tetraplegic with sensory sparing.

The main one being that I tend to be uncomfortable in my chair a lot, this results in me constantly moving, fidgeting to find a comfy spot. Also, if I'm sat on a crease, I have to put up with it, which can cause burning pain, until my jeans can be rearranged.

I'm very grateful for being sensory incomplete though, and am more than willing to put up with the downsides, as being able to feel touch is just a little compensation for my injury. I feel very fortunate actually.

Simon

[Edinburgh Colin]

Simon hit it pretty square on but as a para it's slightly different as I have more mobility.
I beg to disagree with Brock on the pain, I have sensation almost as Simon described but I can get horrendous pain from my legs in particular, burning, raw flesh feelings, these can be helped by rubbing or taking the duvet off them. My opinion is the messages start off in the feet/legs but by the time they reach the brain the code is scrambled from gentle contact to burning, broken glass etc. My proprioception is also poor unless I can see my legs. I have woken with a leg out the bed, freezing cold and when I move it my hip feels like it's bring dynorodded with a red hot poker! So no cold, pain any feeling/messages going to my brain at all to make me want to move or wake up.
Having them there, being able to rub them and feel it, having them for counter balance and not least the visual "completeness" all are also positives.
I'm T3/4 and cannot begin to imagine how it would feel if I could not "feel" anything below my nipples!
A bit of feeling is good and reduced feeling is also good as I can testify after majorly breaking my leg last summer (when in traction would have loved to be complete!). having the wound/sore issues I have now and also the fact I have a lot of Kidney Stones which cause some spasms but luckily little pain.

Ok my contribution anyway, open to PM's if anyone, lurkers included have any questions,
EC

[rage]

I agree with Simon and Colin.

I too am incomplete and the pain can push your boundaries.
At times I would wish for a complete injury so to be free from it, but this ole timer just got use to it as been an everyday thing that goes hand in hand with my type of injury.

It is a high price to pay to be able to cum!!

PS- Chat soon ATG on that other thread.

[brockit79]

Edinburgh Colin, on 08 February 2012 - 10:30 AM, said:

Simon hit it pretty square on but as a para it's slightly different as I have more mobility.
I beg to disagree with Brock on the pain, I have sensation almost as Simon described but I can get horrendous pain from my legs in particular, burning, raw flesh feelings, these can be helped by rubbing or taking the duvet off them. My opinion is the messages start off in the feet/legs but by the time they reach the brain the code is scrambled from gentle contact to burning, broken glass etc. My proprioception is also poor unless I can see my legs. I have woken with a leg out the bed, freezing cold and when I move it my hip feels like it's bring dynorodded with a red hot poker! So no cold, pain any feeling/messages going to my brain at all to make me want to move or wake up.
Having them there, being able to rub them and feel it, having them for counter balance and not least the visual "completeness" all are also positives.
I'm T3/4 and cannot begin to imagine how it would feel if I could not "feel" anything below my nipples!
A bit of feeling is good and reduced feeling is also good as I can testify after majorly breaking my leg last summer (when in traction would have loved to be complete!). having the wound/sore issues I have now and also the fact I have a lot of Kidney Stones which cause some spasms but luckily little pain.

Ok my contribution anyway, open to PM's if anyone, lurkers included have any questions,
EC

hey Colin, sorry I probably did not explain my thoughts very clearly. I also suffer tremendous pain from the inside out but with no sensation of touch to the skin. There is no proven cause/origin of neuropathic pain but one theory is that it is the brain receptors receiving altered signals and perceiving it as pain (I think????). I too can feel when a problem is developing due to; increased pain, aching and more intense burning) e.g when I started to develop an ingrowing toe nail, but I can not feel light touch.

With full sensation if the above theory is correct, the lack of motor function could be perceived as pain also which kind of makes sense in my head but it could be wrong and my understanding of it could be wrong; my response really should have been I'd love to have full sensation because the emotional benefits of connecting with the world in this way; and physically due to possible prevention of sores.

Despite the fact that pain is the only sensation I perceive as coming from my lower half I would still rather have that than no pain because at least my legs and feet feel connected to my body.

just wanted to make reply clearer. value of sensation = priceless

Edited by brockit79, 08 February 2012 - 02:04 PM.

[Apparelyzed]

There are different types of neuropathic pain, some which may not be present hypothetically with full sensation. The reason I say hypothetically, is because only the descending tracts within the spinal cord would have to be damaged, leaving the ascending tracts untouched.

With full sensation, I don't think you'd get central pain, as that is caused by damage to the sensory neurons within the spinal cord lesion and nerve roots, but I could be wrong.

Internal pain is usually called visceral pain and is located in the stomach and digestive area.

With full sensation, you would be at risk over time of increased musculoskeletal pain. This is due to wear and tear on your shoulders, and effects of contractures and atrophy.

If there has been a burst fracture to the vertabra, there could also be nerve root entrapement pain due to bone or disc pressure on the spinal cord.

So, just because you have full sensation, I don't think would mean you would be pain free.

Maybe Trinity knows?

Simon

[Tetracyclone]

Very interesting thread, but this incomplete thinks it would be ok to stop being so darned careful about comparisons to completes. "I cannot imagine how it would be to not feel X..."
Come on. You can imagine it. You cannot experience it, but our completes give us enough great descriptions of their lives that we can be comfortable as voyeurs, happily imagining that which we do not have to endure. Hey- it is better to forget to include some of the worst aspects when we are entertaining ourselves with "what if..."

Same in the other direction- Completes can happily imagine, "Oh, how wonderful if I could move a muscle in my leg..." Why ruin the fantasy with falling down?

[Trinity]

I think if you had full sensation, with absolutely no damage to the sensory pathway in the spinal cord then theoretically you may not have any pain however it is highly unlikely you wouldn't have any damage which is why most people even those with "mild" SCI's still have significant pain issues (people with incomplete injuries often more than those with complete injuries) even though their brain can connect to their limbs, it's all to do with nerve transmission through the spinal cord pathways as opposed to the brain "misreading" messages. As Simon said there are a lot of other more mechanical issues as to why you may still have pain.

In response to the original question, the lack of proprioception is not something I am bothered by, what I would like is bladder and bowel sensation so I wouldn't have to keep second guessing my body! Although all in all you can keep the feeling, I have never has a serious pressure issues but if I did I would rather not feel the pain, also all the bumps and scrapes I give myself from my general clumsinessI would rather not feel. In balance you can keep the feeling, I'll take movement instead!

[Taylor818]

I am a sensory and motor complete. I have no concept of pressure, temperature, or pain from the middle of my chest, down. While I definitely wouldn't mind feeling a good back rub once again, I never find myself wishing I had more sensation down my body. I had surgery about 2 months ago and the testing and recovery probably play a big role in my lack of desire to feel. I also think that if I were to ever regain sensation but still not be able to move or control that part of my body, it would be like one big tease.

[mcferguson]

I am a complete complete, which took some getting used to. It was a surreal experience to cath the first few weeks, knowing how insanely uncomfortable/painful it was without feeling anything. Also, breaking my leg without any feedback whatsoever, not even autonomic dysreflexia, was wierd.

All those benefits mentioned earlier sound great, although I don't think I could cath, I would have to find some other way.

[tsh3406]

I'll echo what Simon and the others said. I will also add that's it is extremely frustrating when everything feels perfectly normal, but does not function the way it is supposed to, and you just can't understand why. When it's a constant reminder, it can wear you down, like hangin' in limbo. Before my sensation returned though, it was much more difficult to keep my balance, had skin breakdown issues and could never tell when I had to use the hopper....

[A trophy guy]

Good replies from all-very enlightening. Now from my perspective: I have full sensation and I do not suffer from any neuropathic pain issues. None. I also can feel when my bladder is full or when my bowels need emptying; so this is a valuable trait to sensation. Also, as Simon already mentioned, having sensation allows me to sense when pressure is getting too much from being seated and I can adjust my position. This is what I consider to be the most valuable aspect to retained sensation; I have never had a pressure sore at all-despite my severe atrophy which puts me at an even higher risk for such problems. In addition to these things, I can feel it if I injure myself somewhere on my lower body; whether it be a small cut (which could become infected if overlooked) or a large contusion.

Now to the downsides...It's definitely not all roses to have full sensation when you are also fully paralyzed. My butt, for instance. For the six years I had to pad my butt due to the severe atrophy and trauma wounds that were a result, I could feel every little bit of it. And it was hell on earth. Every single day. And my butt still is a major source of pain, even though I don't actually need to pad it anymore (though I keep the padding supplies on close standby). And I have a titanium rod and some pins in my left leg from my accident many years ago. Well something is irritating my muscles in that area and it is the WORST, sharpest, most dreadful pain I've felt in some time. I just wish I couldn't feel it sometimes.

And my FREEZING cold feet. UGGHHH. This may be the worst aspect of being able to feel. My feet are literally like ice cubes all the time. They feel like ice to the touch. And I can feel them 100%. The only time they warm up is if I am in a hot bath or after I've been in bed for several hours (I always wake up with warm feet but they get cold within minutes of arising from bed). I've tried everything under the sun to attempt to fight against this coldness, all with no luck. My feet HURT they are so cold. And because I can feel this, it makes my whole body cold and I can't shake it. Even in the summer I have ice cold feet. I hate it.

But overall, I consider my spared sensation an incredibly good thing. I believe it is, in part, what has allowed me to live such a problem-free life as a paraplegic. But there are most certainly downsides to being able to feel parts of your body which, at the same time, you are unable to move. I started this thread in a earnest desire to hear some points of view from others who deal with things from a different vantage point than myself. And I have been pleasently surprised with the results. Thanks.

[rage]

In relation to those of us who have deep muscle sensation especially.

With the weight loss that comes with sci in the lower limbs, have any of ye found that where the stretch marks are, they generate intense pain?

Due to recent health issues, I dropped weight and notice it even more so now.

[LeeS]

My views on value of feeling are a bit varied,

Yes I would love to be able to feel my legs properly but at the same time, I think that being able to feel them without moving them could be a bit frustrating? When lying in bed i get into all sorts of positions with out realising it, I've been lucky enough to not suffer from any sores in the last 2years but i feel if i could feel my legs then it would be irritating and painful? maybe this option would be best so that i don't end up with any problems in the future but i dont think i could decide on this unless it actually happened, Its a bit of a confusing subject in my head though.

I suppose its a bit like everything else, there's always pros and cons

[Edinburgh Colin]

mcferguson, on 08 February 2012 - 05:11 PM, said:

I am a complete complete, which took some getting used to. It was a surreal experience to cath the first few weeks, knowing how insanely uncomfortable/painful it was without feeling anything. Also, breaking my leg without any feedback whatsoever, not even autonomic dysreflexia, was wierd.

All those benefits mentioned earlier sound great, although I don't think I could cath, I would have to find some other way.

Slightly different spin. When I broke my leg last summer, my pain level was probably a 4 during the 6 hours from break until it was in traction and mostly after a few hours when the deep throbbing pain was at ti's worst. Now my scale of 1 to 10 realistically only goes to 8, if it's higher, in my opinion I'm incapable of speech to tell anyone! I think of my threshold as fairly high as probably do most of us "feelers" after what we've all been through. My nerve pain, the burning feet, broken glass, tight almost spasm/cramp feelings can go to a level of 7+ especially recently when I've been stuck in bed with this pressure sore. I guess it's lack of movement that's making it worse recently but the point I wanted to make was how "perceived" painful it actually was.

Not sure how other "feelers" would report this or the types of pain we can feel or think we feel, if you get me?

EC

[Mrs Wisteria]

Hi

With BSS from C4/5, mine is bizarre as I have 'normal' feelings down my right hand side. on the left, its all skewed with temperature (hot water feels cold, cold water feels warm) and sensation, the slightest touch from a feather (or more usually the dogs tail!) and I go through the roof. I can 'feel' pressure etc. But I have had sore areas on my affected side which I haven't been aware of,

Last week I was in the garage with nothing on my feet - stone cold floor, snow outside etc... my right foot very quickly gave up and I stood on one leg while I finished what I was doing. When I went back in the house I realised that I could really have caused some serious damage without being aware... I also have neuropathic pain down my lhs. I have weakness down the rhs.
To go back to your original question though, the benefit I think I would gain from having full sensation would for me be quite minimal really as it is probably more about me still becoming aware of this condtion and its effects. I have what you would rightly describe as 'full capacity' as I can walk, and I can 'feel' normally on my rhs . The biggest pain was/is when the junior doctors descend in their hoards and stick pins in me

Take care
Mrs W

[Edinburgh Colin]

Mrs Wisteria, on 15 February 2012 - 12:26 AM, said:

Hi

With BSS from C4/5, mine is bizarre as I have 'normal' feelings down my right hand side. on the left, its all skewed with temperature (hot water feels cold, cold water feels warm) and sensation, the slightest touch from a feather (or more usually the dogs tail!) and I go through the roof. I can 'feel' pressure etc. But I have had sore areas on my affected side which I haven't been aware of,

Last week I was in the garage with nothing on my feet - stone cold floor, snow outside etc... my right foot very quickly gave up and I stood on one leg while I finished what I was doing. When I went back in the house I realised that I could really have caused some serious damage without being aware... I also have neuropathic pain down my lhs. I have weakness down the rhs.
To go back to your original question though, the benefit I think I would gain from having full sensation would for me be quite minimal really as it is probably more about me still becoming aware of this condtion and its effects. I have what you would rightly describe as 'full capacity' as I can walk, and I can 'feel' normally on my rhs . The biggest pain was/is when the junior doctors descend in their hoards and stick pins in me

Take care
Mrs W

I remember that, always seemed to be a lot more students when rounds got to me and in High Dependency when I was first recovering there were squads of physios practacising with their pins!!!

[Edinburgh Colin]

Mrs Wisteria, on 15 February 2012 - 12:26 AM, said:

Hi

With BSS from C4/5, mine is bizarre as I have 'normal' feelings down my right hand side. on the left, its all skewed with temperature (hot water feels cold, cold water feels warm) and sensation, the slightest touch from a feather (or more usually the dogs tail!) and I go through the roof. I can 'feel' pressure etc. But I have had sore areas on my affected side which I haven't been aware of,

Last week I was in the garage with nothing on my feet - stone cold floor, snow outside etc... my right foot very quickly gave up and I stood on one leg while I finished what I was doing. When I went back in the house I realised that I could really have caused some serious damage without being aware... I also have neuropathic pain down my lhs. I have weakness down the rhs.
To go back to your original question though, the benefit I think I would gain from having full sensation would for me be quite minimal really as it is probably more about me still becoming aware of this condtion and its effects. I have what you would rightly describe as 'full capacity' as I can walk, and I can 'feel' normally on my rhs . The biggest pain was/is when the junior doctors descend in their hoards and stick pins in me

Take care
Mrs W

I remember that, always seemed to be a lot more students when rounds got to me and in High Dependency when I was first recovering there were squads of physios practacising with their pins!!!

[LeviM]

I am C7 - C8 incomplete. I have no motor control below the level of injury but I do have some spotty sensation a few inches below the level of injury.
I have a tendency to injure myself often without knowing it. Sometimes worse than others. I would imagine if I regained complete sensation this would dramatically decrease the amount of injuries I obtain from stuff like feet falling off the footrest and getting run over or crushed between my footplate and objects lol

[megatrig]

This is an interesting thread!

I have no motor power but am sensory incomplete.

I can "feel" 80% "normal" touch all over. I can't feel hot, cold, pain as such. As in knife into leg wouldn't hurt! Not trying it though! Seriously a needle is "dull" but I can feel it. The classic pin prick test!

I had a spinal block a few times and when sitting up and getting back into my wheelchair it feels weird!!! Not feeling my bottom on the seat. Or where my legs are is very strange. It totally throws me!!! I guess I would have gotten used to it if I had been complete but ......

I get a lot of Neuropathic pain from spasm which is a nightmare. Also the cold!! After just getting in my legs are freezing and so "tight" it hurts terribly. Would love to get rid of that one!|1

All in all sensation is very useful and certainly for me helpful. ... Might re read this and add some more.

Does .. yet again .. show just how different we all are!!

[Charlie-boi]

from being complete asia a.... i would have to say to become sensory able would be one of my biggest wishes. I truly think i would be happy as larry.... AND EVEN FORGET ABOUT WALKINGH..

I think SCI has varying steps of hardship. If every sci had the chance to go go one step better i think people would be able to accept and come to terms better with things.....

if only we lived in a perfect world

[McTavish]

i am a T4 incomplete with about 85% feeling down my right side and a little less on the left all of which I am so grateful to have.I am aware of my legs all the time and if one was out of the bed I would be aware of that. My bladder and bowels are almost normal but i do use catheters as I was not emptying my bladder fully, but that is a small price to pay. It never fails to amaze me how people with the same injury level can have completely different levels of pain, felling etc. SCI sure is complicated. My top half is perfect, lol

[Edinburgh Colin]

McTavish, on 23 February 2012 - 10:42 PM, said:

i am a T4 incomplete with about 85% feeling down my right side and a little less on the left all of which I am so grateful to have.I am aware of my legs all the time and if one was out of the bed I would be aware of that. My bladder and bowels are almost normal but i do use catheters as I was not emptying my bladder fully, but that is a small price to pay. It never fails to amaze me how people with the same injury level can have completely different levels of pain, felling etc. SCI sure is complicated. My top half is perfect, lol

You must be a strange shape if you consider your top half normal! My T4 level is nipples and unless you've got a huge head.........
Sorry buddy just in one of these funny moods.
EC

[McTavish]

lol must be time for bed