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.?**** > > **** > > ** ** >
