sensation


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  • Founder and Owner

I was wondering how many people still have sensation all over despite not having movement? I say that I have quadriplegia but it's not quadriplegia in the true sense. I am actually not paralyzed and would describe it as being extremely extremely weak. I have sensation everywhere.

 

Sometimes it can be a curse if you get a sore butt from sitting and not being able to squirm to get off one spot you have been sitting on all day! :Tantrum:

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My mom also has complete sensation and she also gets sore from sitting all day. Recently she has been complaining more about her back hurting , like her spine is pushing into her chair, than her bottom. In the beginning she could barely sit a hour. Now she tolerates about 4-6. Big improvement.

It was so confusing to me in the begining about her being able to feel and them saying she was paralyzed. We have always been told that it is a good sign that she has sensation. For whatever that is worth.

 

Ruth

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Guest PERRYS

I too have full sensation everywhere, and yes I can relate about not being able to squirm lol. When I'm not in my power chair (which tilts to put the weight on my back, not my butt) I can only sit in my manual chair for about 4 hours till my butt hurts so much I HAVE to be moved.

 

I was told that I was not paralyzed either, but really, my left arm is just dead weight. Especially when I am standing.

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Guest veggie.vampire

Right from the moment of the stroke, though my muscles were intially paralysed (could only blink, even tongue paralysed) I have had full sensation throughout. Bizarely just before my arm started to be able to move, it felt like pins and needles. Tongue was the same.

Diane

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Steve,

I too know how you feel, I can feel everything, however I can only barely move my left arm, I am what the doctors call hyper sensitive, meaning even the slightest touch can hurt like heck, gladly I can say that the farther out post stroke I am the pain has decreased some, days after the stroke if anyone touched my left foot I was in an extreme ammount of pain.

God Bless,

Tom

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Hi Steve

I have sensation all over too. In fact although I was Locked In--could only move my eyelids--after the stroke, my ability to feel gave me a false sense of optimism. I thought that I'm going to improve because I can feel everything. And I'm a doctor too!

 

Actually, when I see the MRI I can see why sensation is intact. I infarcted most of the pons on my brainstem but the back of the brainstem is spared. This is where the sensory fibres run down the spinal cord. It must have a seperate blood supply than the anterior cord.

 

I am partially paralysed on both sides, my right being worse than my left. I thought my behind would never toughen up but it has. I am able to stand holding on, so I get the pressure off. If I've been on a trip I make sure I rest in bed on my side for awhile to give my behind a rest.

 

I guess the correct term for us is not quadriplegia--which designates spinal cord injury with loss of motor and sensation--but tetraplegia. I and most doctors have never heard this term before, but Physiatrists would.

 

Shawn

 

 

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Guest lwisman

I find this discussion extremely interesting. It has opened up a whole new understanding for me. I know longer experience paralysis anywhere near the severity of Steve or Shawn. But, I do experience paralysis in my face. Earlier I did have paralysis is my legs like Steve and Shawn have described. I have always had sensation everywhere, at one time I experienced pain whenever my legs were moved. Now I just have problems with speaking and have a sensation on the right side of my face 24/7 and sometimes inside my head. I also experience constant tingling in both feet.

 

Shawn I appreciate your sharing that there is actually a medical term for the type of paralysis experienced by stroke survivors. It certainly makes sense that it is different from what is experiences by spinal cord injury survivors. The damage is in a different location.

 

It is also interesting that more and more brainstem stroke survivors are living. If enough live maybe doctors will be trained in this area?

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Hi Steve,

I had my brainstem stroke 2 and a half yrs ago. Wow, it's been that long! I was locked it too for about 3 weeks. Then I could move a little but just barely. Like I could but my finger on a button on the bed but I couldn't push it. I had a trach and a g tube for a few months. I could feel everything though, just like before, weird, huh. Now after lots of work, my left side is back for the most part. The right side is a different story. I'd say maybe about 30%. Swallowing is still tricky, walking is tough, right arm is just for show-dosen't work, but hey I'm breathin'!!!! :)

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I am so, so happy to see the members participate in these new Forums and have a chance to express themselves about their kind of strokes.

 

A few of them had not posted very often, keep up the posting and the replies coming you all, I love to read and learn more about strokes.

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  • Founder and Owner

I guess the correct term for us is not quadriplegia--which designates spinal cord injury with loss of motor and sensation--but tetraplegia. I and most doctors have never heard this term before, but Physiatrists would.

Shawn

 

Shawn, my neurologist said that I am quadraparetic. Have you ever heard of this term?

 

I do experience paralysis in my face. Earlier I did have paralysis is my legs like Steve and Shawn have described.

 

Lin, I have dysarthia, which is basically where the face muscles become extremely weak. My face muscles are getting much stronger but many muscles are still reflexive. For instance, I smile real big when I am about to laugh but if you ask me to smile for the camera then my smile is not very big.

 

Is this what you have or is your face actually paralyzed and you cannot feel it?

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Guest lwisman

Steve,

 

I can't remember doctors ever naming what I have.

 

I suppose it is not paralysis in the usual way the term is used. The muscles feel tight (24/7). I do not have much feeling on the inside of my mouth. That means I cannot feel food on that side. So I always chew on my left side. The tightness means I cannot move all the muscles on that side of my face. This means that my voice has totally changed. It also means that I am sometimes difficult to understand. This has improved over time. Mostly now the understanding problem comes when I am tired or upset. Sometimes when the person listening does not want to try very hard. Part of the tightness makes it feels dry - I sip water all day for that.

 

I also have the problem that I hear nothing out of my right ear. The doctors say that is because the mechanism (nerve ?) that normally sends signals to the ear has been destroyed -- they say it was flooded by the massive amount of blood caused by the hemorrhage. This means that I don't hear if someone talks into my right ear or if there is a lot of background noise. Don't know if this makes sense, but I am convinced one of the reasons people sometimes don't understand me is that I don't understand them. I do not respond "correctly" to what they say.

 

All of this is even more of a problem on the telephone. I avoid it most of the time. When you are talking to someone in person there are visual clues. Not having visual clues is difficult for both parties on the telephone. Particularly true when they person you are talking to doesn't know you have a problem.

 

The computer is my best mode of communication.

 

As far as smiling goes I can, but my face is a bit lopsided. The lopside is only noticeable if you look closely.

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I'm beginning to think I've lucked out the most even though I've had 3 strokes. Each time the residual is more and it takes longer to respond and get everything back to whereit was prior to the last stroke and then maybe not all the way but I was never locked in. i just had the bilateral paresis and then hemiparesis on the rt side. I've got the continual tingling in the feet and legs w/ the charlie horses you all talk about and also awfful tone and pain in the shoulder and neck muscles and into the hand. At times my hand will go into the claw from all the tone and I lose the fine motor for awhile... Does anyone have any cognitive problems at all.. I' like to hear any issues on that score... I questions what's meds and what's from the stroke... But boy it is frustrating at times although I've learned to work around it... I'd love to hear what others have gone through... Cathy

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Guest lwisman

Cathy,

 

The answer is yes there can be cognitive problems. The question is where in the brain did the stroke occur? If it was an area where cognitive work occurs, it will cause cognitive problems.

 

In the case of Steve, who began this thread, it was in the brainstem. The brainstem controls basic functions, like breathing. Locked in syndrome is also sometimes experienced by those with brainstem strokes. Fortunately, the brainstem is a long ways from the upper part of the brain that is responsible for cognitive function. Therefore those with brainstem stroke are usually not cognitively impaired.

 

The brain is very very complex. See if you can get as much info as possible about your stroke. Just what happened and where.

 

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Thank you for these comments..I had my first stroke in 2000 and another episode last June and possibly last Thursday (my symptoms seem to have increased) I have retained sensation too although my right foot and now my right leg are numb and tingling (like it"s asleep) This is the first place I've found to discuss the myriad of questions I've had since this happened, by the way...much appreciated. I still walk but my right leg is getting more difficult to drag along and it's affecting my left leg. I never realized how different the experiences are for each person that has had a stroke! (and how little understood)

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  • Founder and Owner

Shawn, my neurologist said that I am quadraparetic. Have you ever heard of this term?

 

 

No Steve I haven't heard the term to designate a difference from quadriplegia. I'll ask my Physiatrist next time I see him.

 

Shawn, :uhm: I am just looking at the term practically, when you break down the word, hemiparethes is 2 limbs being effected by the stroke so quadraparetic would be all 4 limbs. Does that make sense?

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  • 6 months later...

hey steve and mike i can relate to both of you on sensation. my left was affected, i mainly feel pressure

but you put 1 small drop of cold water there and man it hurts like you know what.and i'm high pain tolerant lol

that has gotten better but my left side still does not like cold weather. even tho its been 3 yrs in march so i

take the cold as long as i can stand it . Y put myself through it ? because my left side will just have to get used to it! lol- you know the ole saying no pain no gain but thats me. i hope any and every one regains as much normality as possable with out fighting the devil himselfgood luck/ best wishs to e1

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  • 1 month later...

I had a brainstem stroke about 1 and a half years.My left side is so sensitive of hot';cold and touch but yet the left side is some what num.It like you cut body in half and the other side is normal.If i don't wathc out in the shower and forget and test the water with my left foot.I'm in trouble. also have trouble swallowing and have a feeding tube and only57.seem like i never here of people with a feeding tube any one else.Oh yah I walk with a cane very unsteding.And rely bored. hope this help someone out there.[/size][/size][/size]

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i had a ischemic stroke 5 years ago which affected my left side, i use a afo on my left leg and walk with a cane, not very well at times but i make do. i do have sensation on my left side but somewhat diminished. i am totally paralyzed in my left arm and hand but have terrible muscle spasms. this stroke business sucks big time, as we all know, i am glad i am here to tell about it, though kimmie

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I had brainstem bleed. I have regained all movement in my limbs but I have the sensations all the time Steve has referred to. On good days, its just in my lower arms and hands, bilaterally. On bad days, I have it all over, my limbs and torso.

 

Also, recently, I have been experiencing (2) different sensations: an "electrical current" and a "sleep" sensation in my limbs.

 

When I sit, I can only sit for (20) minutes on bad days. Other days, I can sit for a couple of hours. But I have to get up and then I feel dizzy or I get blind spots where I can't see. I can't just sit anywhere, I have a chair w/ an ottoman and that sometimes gives me relief.

 

I started to wonder do I have this sensation in my bum because blood pools there after I sit for awhile? Or am I thinking of something else?

 

These sensations and the inability to sit for a period of time is why I exercise so much, just trying to move body parts. Another solution I want to try for the buttitas is a "whoopy cushion." I don't know if that is the proper term (may be a family term with our warped sense of humor). Its a circular tube filled w/ air and space on the inside of the ring, much like an inner tube but smaller. I'm going to try using that to ease my bum.

 

Also, in the morning, when I wake up, I start having that sensation on my bum and I must get up and get moving. Its just the most terrible sensation. Take Care. LK

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Guest lwisman

LK,

 

I also had a brain stem bleed. I have almost 10 years and still have continuous sensations on the right side of my face and in both feet. I also sometimes have sensations and stiffness in other places.

 

I too find that exercise helps the most. It seems to loosen me up. I would recommend moving about as much as possible.

 

Also examine my feet daily to be sure there are no problems. I figure there might be a problem which I cannot feel.

 

I would think it would take more that a couple of hours for blood to accumulate, but I am not a medical person. I would ask my doctor the next time I was there.

 

BTW, over time the feeling has increased. You have to keep at it.

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