I doubt that would help much, My spine and spinal cord got completely severed in my auto accident, but I have tons of pain. Dan H.
________________________________ From: Fragile <[email protected]> To: quad-list <[email protected]> Sent: Sun, November 6, 2011 12:29:32 PM Subject: Re: [QUAD-L] pain in leg doctor results.( Greg) or others interested. I recently asked my neurologist about severing my spinal cord to try to calm the Central Pain, but he thought it was too drastic. Lot of good a tiny bit of feeling in my arms and legs is doing me. On Sat, Nov 5, 2011 at 7:55 PM, Joan Anglin <[email protected]> wrote: I never thought that I would be glad that I was a C4 complete without any movement whatsoever below my shoulders. However, after reading about all the physical problems that you guys that have movement and the ability to use a push chair, scratch your nose, feed yourself, etc and cetera have more problems than I do. >I am beginning to believe that it is much better to wait patiently until that >wasp walking over my arm flies away than try to hit it! Notwithstanding that >there have been times that I know everyone that was watching me (at the >Monterey >bay aquarium when my wheelchair broke and I was sitting waiting for my family >to >return, one of the instances) probably thought I was insane because I was >swinging my head around huffing and puffing for no apparent reason. Except >there was a swarm of gnats flying in my face. J >Sure I have pain, mostly internal and not necessarily reliable. Hunger, >diarrhea pain, hemorrhoids-my nemesis, shoulder and neck and the ever present >cold, hot tingling that is infuriating. But nothing compares to what some of >you have to endure. My heart goes out to you and for those who believe as I, >I >pray for you. >I had my first trip to emergency in several years, caught my little finger on >a >sharp object and ripped a long gash down to the bone. After 5 hours in >emergency I know why I do not go there!! After being asked several times to >lift my hand, turn my hand over, and please do not move they got ready to sew >me >up. I asked for the finger to be numbed- why asked the wise Dr.? What >difference does it make, you won’t know. I tried to explain that my body will >feel it but not my brain, and he shrugged his shoulders and said whatever. >After I tried to jump out of my chair because of the needle he was using on my >finger he asked me to please sit still. LOL when I asked him if he knew what >autonomic dysreflexia was, he said of course, but then asked me how I knew >that >it hurt-DUH. >He then proceeded to sew me up and left the nerve hanging out ½ inch. When >the >nurse who thought it was a dog hair pulled on it, I almost walked again one >day >after my 21st anniversary. She told a Dr. Who said it would just die and to >leave it alone. We shall see what they say to my official letter of complaint. >Hang in there, it’s much better than the alternative of not being around. J >Joan > > > >From:Billy Lang [mailto:[email protected]] >Sent: Saturday, November 05, 2011 10:50 AM >To: 'Tod Santee'; [email protected] >Cc: [email protected]; [email protected] >Subject: RE: [QUAD-L] pain in leg doctor results.( Greg) or others interested. > >Hi Tod, Guys, > >I have been reading with interest your posts on pain, conditions and meds. >Although our pain manifests itself similarly, I was wondering if anyone else >is >experiencing pain related to my condition? >I Have Arachnoiditis caused by the number of spinal surgeries I've had in the >past. I also have a fracture of a pars bone at L5 with disk herniations >throughout my lumbar. It is inoperable. > >These conditions cause pain in lower back, and in my hip that radiates down my >right leg. My meds: Fentanyl patches changed every 48 hours and OxyContin >every >three hours. I have been managing my pain (most times) augmented by self >hypnosis. My pain management Dr. uses me to teach residents by testing them >and >asking, "Do you think he takes too much medicine?". Before they answer he >quickly says, "he is taking the equivalent of 146 Percocet a day without the >Tylenol." The answer is that he ramped me up over a year’s time to this level. >He finishes by telling them if he took 50 mg of fentanyl patch and put it on >them they would be dead in an hour. Cute story. > >Anyway, I too suffer bowel problems caused by the opiates. We have run the >gamut >of solutions, the latest being 2 cups of Senna tea, afternoon and evening the >day before the bowel program. It seems to be working well, real loose but at >least it's out. Never thought my quality of life would be measured by whether >I >poop or not. Today's a good day. > >I am 23 years post and have an appointment to get both my shoulders shot next >week. Then it's back to physical therapy twice a week to attempt to strengthen >what muscles I have left in both shoulders. Weird, can't understand why the >opiates I'm taking don't take care of the shoulder pain. I know the shoulders >are both bone on bone with tendon damage/loss after using them without triceps >all these years. We all have bone loss from the chairs, meds etc., even our >teeth are effected. > > >Thanks for listening, I'll be watching the list a little more often. Stay >strong. > >Don't let what you cannot do interfere with what you can do! > >Billy > > > >From:Tod Santee [mailto:[email protected]] >Sent: Sunday, October 30, 2011 10:31 PM >To: [email protected] >Cc: [email protected]; [email protected] >Subject: Re: [QUAD-L] pain in leg doctor results.( Greg) or others interested. > >Hi Dana, Greg, Dan and the Rest 'O the Gang! > >Dana, I'll be starting with Forteo in a couple months. I was wondering how >long >you've used it and if you've noticed any changes (as in anything other >than the >bone loss/gain/strengthening) such as how well (or not) any other meds might >work? Bowel and/or bladder changes? Stuff like that. > >I was taking Fosamax for a few years but then an endocrinologist checked me >out >and saw that after all my time in bed after an accident a couple years ago I >was >still "dumping" a lot of calcium. I was losing more through urine than I >could >take in... he said he'd never seen a loss as high as mine (and he's been in >the >business a Lonn..ngg time!). He tried me on one 3-month IV dose of Boniva >(instead of the once-a-month pills) and the IV seemed to help. So he switched >me to Reclast. After 2 yrs of Reclast I'm no longer losing... but still not >gaining. So now we're switching to Forteo hoping to begin >rebuilding/strengthening some bone. I just had a DEXA Scan that showed a >little >improvement. > >My biggest worry now is an increase in pain that might come if Forteo can >accelerate the development of bone tissue. I have a hip that was pretty >messed >up from ischial surgeries followed by a more recent, nasty bout with MRSA >*in* (and through) my hip bone. My hip always hurts like hell and my back >--which ended up fragile enough to crack after 9-months bed time, needing a >"sacroplasty" injection of cement-- contributes to burning, shooting, or an >"over-stretching-feeling" type back and leg pain. > >I guess I'm also wondering if you (or maybe Greg or others) have heard of >increased increased incidences of HO when using Forteo. I know it's fairly >knew >but I'll never be able to read everything out there about it! HO is ONE >problem >I haven't had and hope to "All-That's-Good-and-Decent" that I never have to. >I >doubt many docs would think about upping my pain meds. I'm already on stuff >that makes Oxy or Vicodin feel like an aspirin for an amputation! > > >Thanks for any info or thoughts! Sure wish I was able to get "on-list" more >often but I've been super busy (even after leaving work)! > >Best wishes to Everyone, mi Amigos! >--Tod Santee > >On Thu, Oct 27, 2011 at 2:37 PM, <[email protected]> wrote: >Hi Greg, > >I guess HO is another one of those quadriplegic conditions we have to check for. >I am on forteo injections daily and re-clasp I just got the weeks ago. My >doctor >wants to do both treatments because my bone density deteriorated. The hospital >told me that they had positive results in bone density with reclapce that is >done yearly. >Dana. >In a message dated 10/24/2011 4:01:23 P.M. Central Daylight Time, >[email protected] writes: >Error! Filename not specified.Error! Filename not specified.I took Oxycontin >for >awhile, but insurance changed and now I take MS-Contin. >>They are the only thing that helped. Though they did not help for my common >>quad >>stuff pain, tingling and burning, etc. >>Osteoporosis is more of a bone loss I think. H.O. is more of an excess bone >>growth. >>But I do have both. I have osteo in some areas, but H.O. on my hip. >>I take meds for the osteo now, some pill once a week with loots of water. >>No doc mentioned a connection. >>Greg >> >>> Hi Greg, >>> >>> So sorry to hear about your pain problems associated with HO. Thank >>> you for describing what that term means, as I had never heard of >>> this before. What pain medication works best for you? We have often >>> talked about pain medication on the list. That is such a >>> unpredictable condition especially if it can inhibit joint >>> movement. Is this anything like osteoporosis? God bless you and I >>> will be praying for you. Dana >>> C4-5 complete, 37 years post, 58, I was a passenger in a motor >>> vehicle accident at the age of 20 >>> In a message dated 10/23/2011 3:16:27 P.M. Central Daylight Time, >> >>> [email protected] writes: >>> >>>> The >>>> term heterotopic ossification (HO) describes bone formation at an >>>> abnormal anatomical site, usually in soft tissue. Cause is often >>>> an injury, even >>>> just a hard bruise. A large precent of SCI's have some form of >>>> (HO). It can >>>> grow big enough to prevent joint movement. Because it's growing >>>> in the muscle, it is very painful. And because we can't feel it, >>>> the pain can show up in different areas. Mine is an egg size lump >>>> on my hip. My thigh feels >>>> like it's being crushed, it even shows up in my dreams. I often >>>> dream my leg is on fire or my leg is crushed in a car door. The >>>> pain caused such bad >>>> spasms, I ended up in the ER twice in 2 days before they found >>>> the cause. >>>> My legs and abdomen were cramping so hard I was throwing up. And >>>> I thought my heart was spasming and it was harder to breath. Once >>>> it's under >>>> control, stopped growing. Pain meds can help a lot, but they >>>> cause all kinds of bowel troubles. I've tried just about >>>> everything to get off the pain meds to try to get my bowel >>>> program to work better. Greg >>>> >>>>> What >>>> is H.O.? > >
