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Post by Linda51 on Feb 27, 2009 8:39:51 GMT -6
Hi all,
It seems like pain is the biggest issue for most with SCT. From both of our conference calls we have had this year all spoke about pain. When we had our conference in Chicago pain was the issue most talked about. Joan from the conference in Chicago came up with a question for everyone to describe their pain so I been thinking about that and thought it would be a good discussion on here.
So, if you would, tell us, where do you have the most pain at?
From a scale of 1-10 where do you rate?
Is your pain all the time, off and on or mostly at night?
Describe your pain?
This may help the caregivers/parents to understand more what is normal or not normal with their loved ones.
Thanks.
~Linda
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Post by betty on Feb 27, 2009 12:47:00 GMT -6
Hi Linda, Good idea. My pain is in my right shoulder and scapular area extending out to the arm. It is from all the layers of muscle, etc being cut and because the scar tissue at bottom of incision is stuck it affects the muscle. Once it begins it is about a 5 and stays consistent until I lie down and use ice. It usually begins late afternoon. It is probaby an indicator I am running around & doing too much. The other pain is at the bottom of the incision. Feels like some is grinding their fist in my back. It comes on the same as above. betty
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Post by billanschell on Feb 27, 2009 23:53:32 GMT -6
So, if you would tell us, where do you have the most pain at?
My ankle hurts the most, but my knees are the most constantly uncomfortable.
From a scale of 1-10 where do you rate?
Realistically, probably a 3 on my good days, and a 5 on my bad ones. But since it's constant, it wears me down and seems higher.
Is your pain all the time, off and on or mostly at night?
My pain alternates "good days" and "bad days" like clockwork. Three years ago I could have predicted that today would be a "good day." But even on the good days, I'm plenty uncomfortable. On the mornings and evenings of bad days, sleeping can be affected. But I do usually sleep through the night.
Describe your pain?
Knees: Feel clenched to me, even though they feel normal to a PT moving them around. And if I stand in place for more than a minute or two they start to drive me crazy, as if I'd been standing for 1/2 hour.
Ankle: Feels like it's being squeezed in a vice.
Exercising (going for walks) make the pain much worse, but I do it anyway to keep my strength. I have full strength and walk almost normally despite it all.
None of this pain is around the surgical site; it's all from the distorted nerve signal path, because there's nothing really wrong with my knees or ankle themselves.
--Bill
Should this be posted in the separate pain section of the main website as well?
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Post by qhcrazy on Feb 28, 2009 10:47:22 GMT -6
I'd be happy to participate in this thread:
Where do you have the most pain at? I have the most pain on the bottoms of my feet. I am abnormal from my armpits all the way down to my feet. I have extremely little feeling around my trunk area, and my legs and feet feel like I am wearing a "sandpaper suit", as I like to call it, 24 hrs./day. My legs hurt in the morning when I wake up, I feel like I am sooo stiff and it takes awhile to get everything moving. I still have chronic itching across my upper back and down the backs of my arms, which was my first and only symptom that led me to demand an MRI.
From a scale of 1-10 where do you rate? legs=4 feet=8
Is your pain all the time, off and on or mostly at night? My pain is all day/night
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Post by 8338 on Feb 28, 2009 18:38:44 GMT -6
Hi Linda, (by the way I like your new picture :-)
I have constant pain in my upper back. I think it is because my posture is all off and I'm straining my neck and shoulders. From 1-10, it's about an 8. It helps when I straighten up but I really have to work at it and when I walk, I go back to slouching. When I sleep at night, I sleep on my stomach and it feels sooooooooooooo much better :-)
I also have tingling pain from the middle of my body down to the bottoms of my feet. Taking gabapentin helps with this and at times I don't even notice.
Barb
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Post by sophieruth on Mar 1, 2009 11:26:15 GMT -6
Hi Linda, I had almost no pain for the first year after surgery, just a lot of numbness. About 9 months ago I developed intermittent stabbing pains in my right side. After starting gabapentin it is now rare and not bad (maybe 3) I also have the burning sensation in the belt around my body right under my breasts. This corresponds to the site of the tumor (T7-9) It's almost constant with intensity 2-4 and not much helped by the gabapentin. Most evenings, especially when I am tired my upper back hurts a lot . This feels like muscle pain at about level 5. My legs feel heavy but not painful except that recently for about 2 weeks while walking I had some strange intermittent sensation in my left leg - something between tingling and light electric shocks. It made walking almost impossible at times but it went away. All in all not too bad considering how old I am (almost 76) and that the tumor was big and intramodullar. Sophie
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Post by drummer904 on Mar 1, 2009 12:46:13 GMT -6
So, if you would, tell us, where do you have the most pain at? MY BUTT SINCE I'M IN A WHEELCHAIR.
From a scale of 1-10 where do you rate? SOME DAYS LIKE TODAY, 2, OTHER DAYS ABOUT 8.
Is your pain all the time, off and on or mostly at night? IT VARIES SO MUCH.
Describe your pain? LIKE I'VE BEEN SITTING ON MY BUTT WAY TOO LONG.
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Post by Tmasgio on Mar 1, 2009 12:46:37 GMT -6
Where do you have the most pain at? The majority of my pain is in my back as the lower back is stiff and sometimes radiates into my abdomen. My right foot cramps up alot but other than that I am good...lol From a scale of 1-10 where do you rate? legs=1 feet=4 back = 2
Is your pain all the time, off and on or mostly at night? My pain is all day/night as well but throughout the day as I am doing things it gets better. It takes about 2-3 to get things working in the morning.
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Post by bethann on Mar 1, 2009 14:20:56 GMT -6
where do you have the most pain? My neck and upper right side of my torso. (Bad posture making this more of an issue)
From a scale of 1-10 where do you rate? Some days I would say the pain can get as high as a 9 most days around a 6 then there are the rest that are around a 3.
Is your pain all the time, off and on or mostly at night? I would have to say that the pain is there all day and I feel it until I can relax and fall asleep then there are some nights that I wake up hurting.
Describe your pain? It is just very tight! I feel like I have weights on my shoulders and my skin is pulling so tight then there are times it feels like my right shoulder is going to just burst off.
I am now going to Mary Free Bed Pain Center and they feel they can help me with this pain. They say it will not go totally away but get much better! Oh how I hope and pray this is true!! I just wish I would have heard of them right after my surgery!! (Then again they have never had a patient who had a SCT and very few that have a syrinx!)
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Post by susan on Mar 1, 2009 19:48:47 GMT -6
Where do I have most of my pain? -right head, neck, shoulder, arm and hand
Rate on a scale of 1-10 -there are brief moments of "0", most of the time from 3-7
Frequency -Every waking hour of every day, does seem to get worse as the day goes on, which is why I can't wait to go to bed at night. It is the only time I am not consciously aware of all the whacky stuff going on in my right upper extremity. -It also gets worse as the work week goes on.
Describe -Here is where it gets tricky, you start to sound crazy. The pain charts at my pain specialist consider numbness and burning to be "pain" also, so I'll include them. -I have classic "pain" in my right head/neck/shoulder -The skin of the front of my right neck starting under my jaw down to my collar bone feels like it is sunburned. -The skin of the back of my shoulder is numb (I can't feel my trigger point injections or hot water in the shower) down to my shoulder blade while the muscles underneath hurt. -My right arm gets crampy, feels like there is a band around my biceps and forearm, but the skin is numbish. But if someone does a sensory exam, I can feel everything. -Palm of right hand is pins and needles, with the occasional electric jolt from the wrist down. -The original symptom-numb tip of index figner and thumb is still there. -My right ear and the right side of my head around it hurts. -When I am due for trigger point injections to stop muscle spasms, I start to get headaches starting at the base of my skull. -Occasionally feels like someone is trying to pull my right collarbone off. -I have episodes throughout the day where it feels like someone is pushing down and forward on my right shoulder. -When I am due for trigger point injections I sort of walk with my head forward and to the side as muscle spasms limit movement. They are painful. -My incision is still very sensitive to the touch. It sometimes burns when I touch it.
See-There is not a simple pointing to your pain and saying here is where it hurts. My symptoms are all on the right and of course I am right handed. A lot of the sensations I have are not anything I ever experienced before my surgery. They must be unique to people who have had knives in their spinal cords. I say numb because it is the closest thing there is to describe it.
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