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 wont 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, its 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 years 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.?
