Last post Sun, May 04 2008 4:14 AM by DSB. 11 replies.
I'm ten years into a L5/S1 (incomplete) injury. Long story short, I was picking up a box when my discs exploded. It blew the sheath off my spinal cord, the bone fragments cut through some of the nerves. I lost about 2 liters of spinal cord fluid before emergency surgery. I was told I would be a quad but through a miracle regained use of my left side. I have no feeling in my right foot, leg and back, have foot drop and very limited feeling in the saddle area.
For about five years I had severe pain (nerve, muscle, bone) in both legs and was in a wheelchair. Then after intense physical therapy that lasted over a year I was finally able to walk with a walker and then a cane, using an orthodic. In the past three years I have been able to use my cane more and the wheelchair less. The problem is my legs just stop working at times, like someone has flipped a switch. And if I have to walk any distance I have to use the chair because my legs won't last. Since my SCI I also have intermittent bladder and bowel problems. In fact when I was first injured had to be cathed.
Now for my problem/question...when I was first injured the intense nerve pain and splacity effected my bowels and bladder. The more pain and discomfort the more control I lost. For the past three years I've been fairly stable, and have not had the severe nerve pain and splacity like I did after my injury. In fact it's been almost non-existent.
Now in the past month I've started having nerve pain and splacity again...just like I had in the beginning. It takes my breath away and send shock waves through my entire body. And what I find now to be the major trigger...going to the bathroom! The moment I begin to urinate or deficate I can feel the pain begin in my back and lower region and move down my right leg into my foot and back up again. I have never felt this feeling this way before and it's scaring the hell out of me. I'm finding that I feel like I have to go almost constantly now. Even the smallest amount of urine in my bladder makes the pain worse.
My problem is that at this point I have no health insurance and no money to see my specialists, at least not until November when my husbands insurance will cover me again. And I'm scared. My doctors told me that eventually I would probably have to start cathing myself. And although I'm not having a problem going...these new feelings have got me frightened that my condition is changing...for the worst.
Have any of you experienced any thing like this? I know everyone's injuries are unique, but still, perhaps some one else's knowledge about this process may be helpful to me.
DreamCatcher
My primary condition is almost identical to yours DreamCatcher, including the cause. Only I was bending over to catch bugs for a disabled owl when I blew mine out. Only real difference is, and what made me worse, is the lack of good medical care when it first happened. But many things are the same... I had NO bowel/bladder control for a long time, and it took awhile to re-teach some muscles "down there" to at least give me a few seconds to get to a bathroom. I'm about 50/50 on making it now, mostly losing urine, but I've had other close calls.
What concerns me is that you say the pain starts as you begin to go. I'm wondering if that is actually a seperate problem, since even as badly as I was treated medically, I've never had that problem. Sure, on days where the pain otherwise is greater, bowel/bladder control is less, but I can't say it's anymore painful than it already was. I guess what I am saying is I don't think it's got to do with the spinal injury. My best advice would be to talk to your doctor about the pain, it's signalling something else is wrong? In 20 years, I've never felt what you are describing, and our injuries are almost identical. (It was after the first surgery they told me I also had DDD. Gee, thanks! LOL!)
Edited to add: I wonder if you've ruptured something more? Or if a bone fragment moved? Do you have hardware (rods, plates) in your back? I had Modified Harrington rods and after about 9 years, the calcium build-up made it so incredibly painfull, I had to have them removed. Now that I think about it, they were the cause of a really bad time in my life, before they were removed. But still not like you describe, almost any movement caused pain then.
<scratches head> I dunno hon.... best bet is tell your doc. Good luck!
Thank you for your response...I too meditate but I've not tried the"core" muscles as you suggest. I will try it. The doctors tried me on Neurontinand several other anti-seizure meds but to no avail. They had me shaving them at one point but they all caused me to have severe sleep apnea. The problem is I am so sensitive to medications that I have to take child doses of most things and others I can't take at all. If it weren't for meditation I'd be a raving lunatic with the pain. But again, I will targeting the "core" and see if that helps.
Thank You!
I too was a victim of lack of medical care...I injured my back on a Thursday, I was in so much pain! I saw the doctor on Friday but he said it was just a strain. By Monday I could hardly feel my feet. I called the doctor back but he said to "wait". I got up out of bed on Tuesday and couldn't stand up so I called the doc again, and he said to go to the ER...the ER doc gave me Valium, saying I had a "slight herniation", and sent me home. By Friday I couldn't feel anything below my waist, my back, legs and feet felt like wood. I called the doctor again and he said go back to the ER. This time they immediately gave me a bunch of shots, then took me in for a CAT Scan. I barely remember being wheeled out on the gurney. But I do remember being surrounded by four doctors and them telling me not to move, don't sneeze, don't cough...nothing...just stay as still as I could, and they were taking me to surgery.
Since then I have changed doctors, they sent me to neurologists and other specialists...they ALL told me that if they had of used the correct protocol for a spinal injury I probably would have come out okay. Like you I have also been DX'd with DDD and Chronic Arthritis of the spine. At the time of my injury I also had C4 and L4 herniations. They did the epidural on the C4 which took the pain away...but the L4 herniation wasn't touched and is still there. On my primary (L5/S1) they did a laminectomy and patched the hole in my spinal sheath. I continued to leak spinal fluid for about 10 days but it finally stopped.
Perhaps you're right, maybe my new pain is connected to the L-4 herniation. Which means I will have to baby it and hope nothing else changes until November when I get insurance.
Thank You for your post, it's helped more than you know.
Dream Catcher
DreamCatcher: I too was a victim of lack of medical care...I injured my back on a Thursday, I was in so much pain! I saw the doctor on Friday but he said it was just a strain. By Monday I could hardly feel my feet. I called the doctor back but he said to "wait". I got up out of bed on Tuesday and couldn't stand up so I called the doc again, and he said to go to the ER...the ER doc gave me Valium, saying I had a "slight herniation", and sent me home. By Friday I couldn't feel anything below my waist, my back, legs and feet felt like wood. I called the doctor again and he said go back to the ER. This time they immediately gave me a bunch of shots, then took me in for a CAT Scan. I barely remember being wheeled out on the gurney. But I do remember being surrounded by four doctors and them telling me not to move, don't sneeze, don't cough...nothing...just stay as still as I could, and they were taking me to surgery. Since then I have changed doctors, they sent me to neurologists and other specialists...they ALL told me that if they had of used the correct protocol for a spinal injury I probably would have come out okay. Like you I have also been DX'd with DDD and Chronic Arthritis of the spine. At the time of my injury I also had C4 and L4 herniations. They did the epidural on the C4 which took the pain away...but the L4 herniation wasn't touched and is still there. On my primary (L5/S1) they did a laminectomy and patched the hole in my spinal sheath. I continued to leak spinal fluid for about 10 days but it finally stopped. Perhaps you're right, maybe my new pain is connected to the L-4 herniation. Which means I will have to baby it and hope nothing else changes until November when I get insurance. Thank You for your post, it's helped more than you know. Dream Catcher
You are more than welcome DC. I was pleased to find someone who'd gone through exactly what I had. While it sounds like my initial "blow out" of discs wasn't as severe as yours, it did take them a lot longer (almost a year) to do anything other than shoot me full of Demerol and tell me to "take it easy". In many ways, I am still angry at the lack of caring from the medical profession at the time... had they Dx'ed it right away, I am positive I'd be walking and pain free now. I can still hear the words of one doctor who told the others he felt I was drug-seeking... "I'm sorry. I was wrong about you". That was nice, but no way does it excuse the way I was treated.
Mine is also in the L-4/5 and S-1 region, along with a rupture in my cervical spine, although at the moment I cannot for the life of me remember which C's I messed up in 1999. (The original injury of my lower spine was in 1988.) Just recently I changed primary care providers because my old doc had begun to dismiss things I'd talk about, such as carpal tunnel symptoms (which felt a lot like what happened when I ruptured the C's) and drop foot problems. But again, I feel a lot of this has to do with my insurance. I'm sure most of us have horror stories about insurances and SSDI.
Nice to meet you by the way. I do hope you get this settled quickly.
Well not too sure of what help I may bring but due to an accident and T6&8 if I recall compression fractures and a sminal cord trauma since 1993 and now spinal stenosis dealing with pain can be hard at times and keep in mind the pain may always be there only some days are worse then others. But gain a bteering understaningby me of how all of it works is pretty useful information because then you start to set better goals for yourself. Central nerve swelling is usually the cause of the pain and it has a range of feelings from being numb to feeling like your getting poked with hot needles. Remeber when you have swelling that the swelling reduces at only about one CM per month so if you have a 5cm swelling somewhere expect 5 months for that to reduce maybe by meds and ther are some including of all things prozac that help reduce nuro swelling. So keep in mind ways to reduce swelling and sometimes it may require creative means since walking can present problems for me I use a combination of things a care, or walker, chair and to cover any distance a Segway.
I also have trouble with pain meds and usually only need 1/4 to 1/2 the amount and avoid them at all costs unless it just gets too painful. On the other side watch pver the counter pain meds also do not take massive amounts of any of them you could damage your liver at daily use several times in a day.
I would suggest paying attention also to when you do things where the pain is at a minimal level and get a mindset that sometimes things hurt if you do nothing just as bad as if you do something. An example I had been home far too long friends came by took me out on a day trip not only did I get to see like acres of flowers and it was a cool view I got to spend time with friends, share a meal and had lots of laughs, yes it hurt but know what spending a day like that was well worth it.
Not sure if any of this will help but know what many live with pain levels a different degrees what you have to do is not let the pain destroy your spirit.
DSB: . Not sure if any of this will help but know what many live with pain levels a different degrees what you have to do is not let the pain destroy your spirit.
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Well said DSB, this part is very important, and I do hope the newly disabled read it. Drugs can only do so much, and learning relaxation techniques as well as keeping an upbeat attitude goes a long way in keeping one more comfortable. One doctor told me he prescribes pets as therapy as well, saying when you transfer your worries and attention off yourself and onto a pet, you feel less pain. I already had a dog so I didn't need the script, but it was nice to know of a doctor who realized the value of an animal for disabled people dealing with chronic pain.
Life is full of challenges. Don't let this one make you give up.
Shimas, thanks I would agree but I'm not good on off loading anything to things other then objects a shift maybe the way one aranges say oh rocks but mostly in works of art that well go figure aresort of peaceful. I just hate to see people think because it is over the counter it is not bad because most of it is in several doses daily level. I know well because been there done that. I would strongly advise peoople to look up on the web their meds often times as was my case the meds side effects were far worse then the actual problem they were supposed to be for.
It is taking time but finally DR's are starting to figure out they are well one small part of the total health picture not the final answer. I'm a babyboomer and well I have questioned stuff all my life think it is going to change in old age?
DSB: Shimas, thanks I would agree but I'm not good on off loading anything to things other then objects a shift maybe the way one aranges say oh rocks but mostly in works of art that well go figure aresort of peaceful. I just hate to see people think because it is over the counter it is not bad because most of it is in several doses daily level. I know well because been there done that. I would strongly advise peoople to look up on the web their meds often times as was my case the meds side effects were far worse then the actual problem they were supposed to be for. It is taking time but finally DR's are starting to figure out they are well one small part of the total health picture not the final answer. I'm a babyboomer and well I have questioned stuff all my life think it is going to change in old age?
Oh, I agree with you there. I just watched an "Intervention" show who's addict was using over the counter cough suppressent pills to get high. What got me is, addicts who didn't know this was an addicting substance before sure do now, they showed what is was and I looked it up. Seems EVERYONE on the Internet knows it's a drug of choice for many people. But we as people with chronic pain as well as more pronounced depression probably know more about doubling, tripling meds and becoming addicted better than any drug addict. Ours was often sanctioned by the doctors! We get the mindset that if one makes us feel better, two can make us feel doubly better! Not all of us do this, I'm sure, but a greater majority of us have. Just as depression runs high in disabled people.
I advocate looking up medications on the 'Net too DSB. Especially if you feel your doctor isn't giving you all the information on a particular drug, or if like me, you can't read the tiny print on the papers they give you explaining the drug... you need a microscope to read those things! But you bring up a very valid point as well, one must, MUST check and see what an OTC drug can do when interacting with other drugs, OTC or prescription.
I'm in my fifties as well, and yeah, I still question everything. But at the same time, I'm also set in my ways for many things, but I'm thinking it's that I got sick of things always changing and just want some routine sometimes.
DreamCatcher:The problem is my legs just stop working at times, like someone has flipped a switch. Have any of you experienced any thing like this? I know everyone's injuries are unique, but still, perhaps some one else's knowledge about this process may be helpful to me.DreamCatcher
The problem is my legs just stop working at times, like someone has flipped a switch.
Dream,
You may have a Central Cord Syndrome injury, which can get worse again over time. I know what you mean about somebody flipping a switch and "see the magic legs collapse right before your very eyes!" I have this problem myself.
If the weather has been flip/flopping in temperature and rain/sunshine the way it has been in Arkansas for the last month, I'd say the weather is contributing to the pain. I've been in terrible pain for the last month myself.
If you want to talk to me more directly, just send me a message offline.
Notwheels
Dreamcatcher, to anser a cuople issues well yes the legs just do give out and quit, as can well lower body functions not pretty or fun. But you can still have diginity over it all.
The real catch22 0f all of it and I'm on that path sort of at least through the next surgery is one in order to have any benefits have to loose everything and well take the burden of our challenges we must be beggars in order to those more abled bodied to give to us to feel better about their self. Sorry but fact is blow your spine out loose a few jobs a spouse houes all the stuff and suck up to chairty..ooops got that part cpvered.
Heck post me off the thread I've got little to loose but I can hook you up with some great people for well for support and well maybe a laugh.
Hang in there and sorry to hear about the cath I know
i'll be thre one of these days.
DSB
