Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 I had the steroid injection this evening; time will tell if it helps. It seems better while lying down, just mostly an ache at the ankle, but still lots of cramping when I get up to walk. He said we'd just take it a day at a time. I'm really scared that it will get a little better, I'll go home & then it will start all up over again. I'm such a wuss; I practically get in a panic just remembering how I felt. Now I just want to stay on total bedrest in hopes that will keep the pain from flaring up again. But since I'm only 62, that could be 30 years of bedrest, so probably need to have a backup plan! Thanks, everyone, for your good wishes & prayers. welcome to the group. My current problem isn't sarc-related, so hope I don't scare you! Well, I just took a Flexeril; haven't had any Dilaudid for about 10 hrs. I'm hoping to make it through the night without the Dilaudid, but if it gets too bad to sleep I'll be punching that button! I did some more research & found some stuff about spinal cord stimulators. I asked the neuro about it when he did the injection & he said that would be a last resort, even after surgery, so I guess I'll scratch that off the list for now. Well, I'm going to do a little reading & see if I can get to sleep early. The hospital is not the place for night owls like me; they roust everybody up at the crack of dawn. I'll let y'all know how I'm doing tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Mon, 14 Mar 2011 11:57:51 -0600Subject: Re: cervical spine fusion & attn: Mitch Hey Rose,Hang in there, I'm glad the pain is getting better, and I hope the epidural works for you. I feel like I'm on a roller coaster ride these days with family stuff and stress. Such is life. right:) you take care, and thanks for the updates. Prayers coming your way. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Hey, Connie. I had a cervical spine fusion 11 years ago & it went great. I had horrible shoulder & arm pain (felt like someone trying to twist my arm off at the shoulder), tried 2 kinds of traction, chiro, massage therapy & a variety of muscle relaxants. The only thing that helped was hard pressure at a certain spot in my shoulder. The nurses would take turns pushing a tight fist into my shoulder! I began to have muscle weakness & lost all my reflexes in that arm, so after a few weeks I had the surgery. When I woke up the pain was gone! Of course, my neck was pretty sore for a couple of days, but that was nothing compared to the arm pain. From my research at the time, cervical spine surgery had very good odds of success compared to the potential risks. If I had those kinds of odds for the lumbar spine, I would have jumped at surgery many years ago. This leg pain is similar to the arm pain, but much worse & I haven't been able to find a trigger point for pressure to relieve some of the pain. The neurologist is going to try the epidural steroid injection today, but probably not until after office hours, so I may end up spending another night here. That's fine by me, since that's where the IV drugs are. I've been able to space the Dilaudid out to every 4-6 hours, compared to every 2-3, but I still get to the breaking point. Mitch, do you have any other suggestions? I don't know if you've been reading about my pain trek, so here is the Readers' Digest version: low back pain & periodic spasms for 30 years. Gradually worsened the past 15+ years. Chiropractic initially worked great--had 2 excellent clinicians. Bouts of severe left hip & leg pain every year or so for past 8-10 years; used to respond to exercises, chiro, massage, swimming, heat or cold, muscle relaxants, MBSR (mindfulness meditation), creative positioning & support. Probably more, but can't think of any right now. Had MRIs, a provocative discogram & surgical consult; advised not a good candidate for surgery because too many discs involved, along with poor odds for relief of leg pain even if it helped back pain. A couple of years ago I had a spell that resisted everything; even tried the epidural injection although previous ones had failed (except the first). Finally we tried Baclofen & that worked. I took it for 2 or 3 weeks, then tapered off it & was fine (just my "normal" pain & spasms) until about 3 weeks ago. Then this last episode started about 2-1/2 weeks ago. Tried everything except epidural shot, even Baclofen; just got worse. A week ago I went into my PCP's office & saw his nurse-practitioner, who started me on Pred & vicadin. We talked about another surgical consult, hoping maybe something new had developed. The consulting surgeon wanted an updated MRI, which was to be today. However, last Wed. night something happened, don't know what. I just turned to wash my hands & awful pain went through my left hip, thigh & down my leg. It wouldn't let up. It takes a lot of pain to make me cry; I bawled & couldn't stop. We ended up calling an ambulance & I've been here in the hospital since (5 days) with diagnosis of intractable back pain; it's actually intractable leg pain, but maybe they don't have a code for that. Anyway, IV Dilaudid helps, but I don't feel that I could go home like this. They started a fentanyl patch, lowest dose, on Saturday, as well as Flexoril. Don't know which, or both, are helping, but I've been able to space out the Dilaudid some. P.T. feels good while there, but the pain returns immediately with walking. I've always been able to tolerate just about any pain, as long as I could complain about it (whining & moaning seems to have a genetic component on my dad's side of the family), but all the moaning in the world doesn't help me tolerate this. I did some research yesterday & found a term I hadn't heard before: neurogenic claudication. It describes perfectly the pain I'm having. Unfortunately, the treatment options are apparently the usual. I thought about a spinal stimulator or whatever it's called; thought I'd try to look that up today. I don't know if it would help this situation. Any ideas from your perspective would be appreciated. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Sat, 12 Mar 2011 00:33:26 +0000> Subject: Re: Re: Chaos> > Marla thank u so much i've been told so many horror stories u have really made me feel better sorry about the small font, i writing this on my phone> > ----------> Sent from AT & T's Wireless network using Mobile Email> > - RE: Chaos> >> >> > Good thinking, Connie! I did consider DVT, but after a careful assessment> > (I> > don't know if you remember that I'm a retired certified nurse-midwife) I> > pretty> > much ruled that out. I did get checked out today; you can read all about> > it in> > my reply to Marla.> >> >> > Ramblin' Rose> > Moderator> >> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> >> >> >> >> > ________________________________> > To: Neurosarcoidosis > > > Date: Thu, 3 Mar 201> >> >> > ------------------------------------> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> >> >> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 Sounds like things are getting better, so hopefully they will just continue to get better every day, and you'll be running a 10K in no time. Prayers still with you for quick healing. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb I had the steroid injection this evening; time will tell if it helps. It seems better while lying down, just mostly an ache at the ankle, but still lots of cramping when I get up to walk. He said we'd just take it a day at a time. I'm really scared that it will get a little better, I'll go home & then it will start all up over again. I'm such a wuss; I practically get in a panic just remembering how I felt. Now I just want to stay on total bedrest in hopes that will keep the pain from flaring up again. But since I'm only 62, that could be 30 years of bedrest, so probably need to have a backup plan! Thanks, everyone, for your good wishes & prayers. welcome to the group. My current problem isn't sarc-related, so hope I don't scare you! Well, I just took a Flexeril; haven't had any Dilaudid for about 10 hrs. I'm hoping to make it through the night without the Dilaudid, but if it gets too bad to sleep I'll be punching that button! I did some more research & found some stuff about spinal cord stimulators. I asked the neuro about it when he did the injection & he said that would be a last resort, even after surgery, so I guess I'll scratch that off the list for now. Well, I'm going to do a little reading & see if I can get to sleep early. The hospital is not the place for night owls like me; they roust everybody up at the crack of dawn. I'll let y'all know how I'm doing tomorrow. Ramblin' RoseModerator " I child-proofed my home and they STILL get in! " (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Mon, 14 Mar 2011 11:57:51 -0600 Subject: Re: cervical spine fusion & attn: Mitch Hey Rose,Hang in there, I'm glad the pain is getting better, and I hope the epidural works for you. I feel like I'm on a roller coaster ride these days with family stuff and stress. Such is life. right:) you take care, and thanks for the updates. Prayers coming your way. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Hey, Connie. I had a cervical spine fusion 11 years ago & it went great. I had horrible shoulder & arm pain (felt like someone trying to twist my arm off at the shoulder), tried 2 kinds of traction, chiro, massage therapy & a variety of muscle relaxants. The only thing that helped was hard pressure at a certain spot in my shoulder. The nurses would take turns pushing a tight fist into my shoulder! I began to have muscle weakness & lost all my reflexes in that arm, so after a few weeks I had the surgery. When I woke up the pain was gone! Of course, my neck was pretty sore for a couple of days, but that was nothing compared to the arm pain. From my research at the time, cervical spine surgery had very good odds of success compared to the potential risks. If I had those kinds of odds for the lumbar spine, I would have jumped at surgery many years ago. This leg pain is similar to the arm pain, but much worse & I haven't been able to find a trigger point for pressure to relieve some of the pain. The neurologist is going to try the epidural steroid injection today, but probably not until after office hours, so I may end up spending another night here. That's fine by me, since that's where the IV drugs are. I've been able to space the Dilaudid out to every 4-6 hours, compared to every 2-3, but I still get to the breaking point. Mitch, do you have any other suggestions? I don't know if you've been reading about my pain trek, so here is the Readers' Digest version: low back pain & periodic spasms for 30 years. Gradually worsened the past 15+ years. Chiropractic initially worked great--had 2 excellent clinicians. Bouts of severe left hip & leg pain every year or so for past 8-10 years; used to respond to exercises, chiro, massage, swimming, heat or cold, muscle relaxants, MBSR (mindfulness meditation), creative positioning & support. Probably more, but can't think of any right now. Had MRIs, a provocative discogram & surgical consult; advised not a good candidate for surgery because too many discs involved, along with poor odds for relief of leg pain even if it helped back pain. A couple of years ago I had a spell that resisted everything; even tried the epidural injection although previous ones had failed (except the first). Finally we tried Baclofen & that worked. I took it for 2 or 3 weeks, then tapered off it & was fine (just my " normal " pain & spasms) until about 3 weeks ago. Then this last episode started about 2-1/2 weeks ago. Tried everything except epidural shot, even Baclofen; just got worse. A week ago I went into my PCP's office & saw his nurse-practitioner, who started me on Pred & vicadin. We talked about another surgical consult, hoping maybe something new had developed. The consulting surgeon wanted an updated MRI, which was to be today. However, last Wed. night something happened, don't know what. I just turned to wash my hands & awful pain went through my left hip, thigh & down my leg. It wouldn't let up. It takes a lot of pain to make me cry; I bawled & couldn't stop. We ended up calling an ambulance & I've been here in the hospital since (5 days) with diagnosis of intractable back pain; it's actually intractable leg pain, but maybe they don't have a code for that. Anyway, IV Dilaudid helps, but I don't feel that I could go home like this. They started a fentanyl patch, lowest dose, on Saturday, as well as Flexoril. Don't know which, or both, are helping, but I've been able to space out the Dilaudid some. P.T. feels good while there, but the pain returns immediately with walking. I've always been able to tolerate just about any pain, as long as I could complain about it (whining & moaning seems to have a genetic component on my dad's side of the family), but all the moaning in the world doesn't help me tolerate this. I did some research yesterday & found a term I hadn't heard before: neurogenic claudication. It describes perfectly the pain I'm having. Unfortunately, the treatment options are apparently the usual. I thought about a spinal stimulator or whatever it's called; thought I'd try to look that up today. I don't know if it would help this situation. Any ideas from your perspective would be appreciated. Ramblin' RoseModerator " I child-proofed my home and they STILL get in! " (Bumper sticker) > To: Neurosarcoidosis > From: conaugusta@... > Date: Sat, 12 Mar 2011 00:33:26 +0000> Subject: Re: Re: Chaos> > Marla thank u so much i've been told so many horror stories u have really made me feel better sorry about the small font, i writing this on my phone > > ----------> Sent from AT & T's Wireless network using Mobile Email> > - RE: Chaos> >> >> > Good thinking, Connie! I did consider DVT, but after a careful assessment> > (I > > don't know if you remember that I'm a retired certified nurse-midwife) I> > pretty> > much ruled that out. I did get checked out today; you can read all about> > it in> > my reply to Marla. > >> >> > Ramblin' Rose> > Moderator> >> > " I child-proofed my home and they STILL get in! " (Bumper sticker)> >> >> > > >> > ________________________________> > To: Neurosarcoidosis > > From: conaugusta@... > > Date: Thu, 3 Mar 201> >> >> > ------------------------------------> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > >> >> > Message Archives:-> > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups.yahoo.com/group/Neurosarcoidosis/database > >> > Quote Link to comment Share on other sites More sharing options...
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