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Fentanyl Help



  • sandi said:
    It was and is important for us to share what we know, to be able to help someone else avoid the pitfalls that we encountered and to encourage others who are just starting this journey.
    I'd like to think that there was something good that came out of this journey of mine........and I know that Liz and Ron, both feel the same way.

    Cyber brownies for all our moderators for a job well done--Ron, you will have to provide the spirits since that is your area of expertise ;-)
  • Can I have one with walnuts??
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  • Thanks so much Sandi!!!
    I have an emergency appointment with the current pain doctor tomorrow at 8AM. Can I ask what happened to you? How you were treated by doctors and what mistakes were made? I haven't been on here for years.

    I had 1 very successful cervical fusion preventing paralysis and I had a cervical cord injury. The surgery should have been done sooner. I still have some residual effects. It was an anterior approach and a breeze. C5 actually fused itself from the injury during the time they waited and I was in pain until it fused. but it pushed C4 into the cord.

    My lumbar surgeries have been disasters. I had a quack tell me I could not walk because of my lower back and operate on L4/5 when it was my neck that was causing cervical myleopathy. That. was in 2010 and I entered pain management after the botched surgery. After I had my neck done, as an emergency, the myleopathy was progressing fast, the neurosurgeon took MRI's of my low back and said, " what the heck did he do?" He had a reputation as a butcher. I had to have a 360 revision with the cage, rods, screws, for spondylethesis, stenosis, and it took 8 hrs because I was loaded with scar tissue. ,I had three surgeons. I felt better for a few months and then the pain returned. I am so sorry I had any lower back surgery, but we can't look back.

    Since you have so much experience with meds, I am reluctant to go up to 50 mic of the Fentanyl so soon. I am having a bad flare of ride sided lumbar/leg pain and weakness.Probably, as you said, I am under dosed. I just hate the roller coaster of taking opiates, becoming tolerant, and having to increase the dosage. I think an injection would help. I wish to God I wasn't allergic to NSAD's or I would alternate. I have erosive Lichen Planus, an autoimmune disorder. Even if I take one aspirin, my whole mouth, inside my cheeks and personal area erodes. One Fosamax tablet did it, too.
    Is there a medication that is known to not to build a tolerance as quickly as the others? Has anyone had luck using Tramadol ? I am 62 and I still have hope of getting better, someday. My R leg is weak and walking limited, though. I have a hard time with steps and inclines.I just have to take them, slow. I use a cane when I am outside.
    I was up all night with the sweats and the chills, They won't stop. I don't seem to be able to tolerate the Fentanyl. Is Fentanyl known to make you sweat??? I even tried switching back to hydroctortisone for a day to see if it had any thing to do with my endocrinologist changing me to prednisone, but it made no difference. So, it has nothing to do with my Addison's Disease, unless, the Fentanyl causes a dysfunction with the HPA axis.

    I am hoping to start therapy next month. Your links are very informative and I have also learned a lot from what other's have posted. Thanks again.You were a great help to me. God Bless and Take care, Mary Anne

    Take care and God Bless,
    Mary Anne
  • sandi said:
    Can I have one with walnuts??

    Absolutely you can have walnuts in your brownies, sandi!!! Is there any other way to make'em?? ;-)
  • Taren said:
    sandi said:
    Can I have one with walnuts??

    Absolutely you can have walnuts in your brownies, sandi!!! Is there any other way to make'em?? ;-)

    Not in my house there isn't.............I want them with walnuts.......and sometimes with ice cream and chocolate syrup......
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  • Peanuts, with a layer of peanut butter & cream cheese on top, then a layer of cool whip mixed with vanilla pudding on top of that, & sprinkled with chopped peanuts & chopped Hershey bar? I make these every year for Thankshiving, as part of a smorgasbord of other desserts. I'm not allowed in the door for Thanksgiving without these brownies!

    Sadly though, my "smorgasbord" has shrunk considerably due to the back stuff, but I'm focusing on what I can do, not what I can't :)
    We can't always control the cards we are dealt in life, but we can control how we play the hand
  • It's a long story but I will try to shorten it a bit........we hit a deer on an interstate highway at 60 mph.......I was thrown for several hundred feet before I landed, and went another 75 or so on my spine.....over the next 15 years or so, I periodically had flare ups of pretty intense pain but managed most of it by using a chiro. After my last flare up in 06, after the usual rest, heat and chiro didn't resolve the problem......I was sent for an MRI, which showed three herniations, L3-4, L4-5, and L5-S1......with a decent spondylolysthesis , foraminal stenosis , canal stenosis and some vaccum phenomena in two vertebra....ligament hypertrophy, and of course, the usual ddd, but pretty severe in the lumbar area.....
    My old chiro sold his practice to a new guy, whom he told NOT to do any adjustments on me , just heat, massage and stretching. I developed a partial foot drop and the emg's showed some nerve conduction issues as well. Anyway, the new chiro one day decided to do an adjustment and when he did it, something else snapped and my legs buckled under me, and wouldn't hold me up.......it passed after what seemed to be an eternity but was really only a few seconds or half a minute......it happened a few more times and I needed help to get to my car....but on the way home, my legs went into spasms that were so bad that I had to stop the car.
    I wound up seeing a physiatrist at a surgeon's office that next morning, right after they opened.....he had me go get my MRI films and report and bring it right back to consult with the surgeon, right then and there...... before I knew it, I was scheduled for surgery......I thought that it would be a few months out but it was in days after that first visit.
    Post op, I was supposed to be in the hospital for at least 5 days.......but for some unknown reason my surgery was 7 hours long, and when I woke up, I knew that something was horribly wrong.....instead of the patch of numbness on the side of my left calf, I had no feeling from my hips down, and a total foot drop on both sides......I couldn't tell if I had to use the toilet, or empty my bladder and the pain was so intense that I couldn't breathe....When the surgeon came in the next day, told me that if I could make it up the number of stairs at my home, he would send me home and walked out of the room.......I didn't even get a chance to ask him why I had all of this new numbness and wasn't able to move without such intense pain that it took my breath away.... anyway, what ultimately wound up happening is that I spent some 17 months loosing more and more of my ability to stand on my own two feet........and not getting answers to why....... I was told that it was nerve pain that flared up due to the compressed nerves post op, and it would get better........no explanation why I was left with bladder issues and bowel issues, and after a year of no answers, I finally went and saw several other surgeons, who went over things with me but refused to touch me. Finally one told me what occurred. I developed a case of post op Cauda Equina Syndrome due to severe compression , bleeding, and fluid build up post op......it compressed the canal and nerves in the thecal sac to such an extent that it permanently damaged all of those nerves at L4-5...... as time went on my ability to walk or stand was lessening with each passing day and ultimately my physiatrist ordered a wheelchair for my use.....he was certain that I would wind up there permanently. I have a new 38,000 motorized wheelchair that sits in my bedroom as a constant reminder.....and a nice purple one for shorter trips but not motorized, it is custom made for me.....
    The surgeon who finally took the time to be honest with me, offered me the only hope that I had to attempt to stay on my own two feet.........his offer was what he termed a "last ditch salvage only operation"........he had to replace two broken, dislodged screws that were backing out of the vertebre, and he would attempt to decompress the three levels effected by the damage post op, but there were no guarantees.....he would use bmp to attempt to fuse what didn't fuse the first time but it was a last ditch effort.... he was taking a risk, and I had to be willing to accept whatever the outcome was......he wasn't sure that it would help but he offered when no one else wanted to touch me..
    I jumped at the opportunity, and two weeks later, was in the OR........sadly enough the use of bmp caused me to develop a second onset of Cauda Equina Syndrome, this time at a level higher than previously, because the bmp caused an overgrowth of bone into the canal, and has fused the dura of the thecal sac to adhere to the the back of the vertebre, at three levels, and the lamina at the back of the spine......so here I am, needing a third operation but at my last consult with two leading surgeons in NYC, both said that I need to have the operation , but they are afraid of the very large dural tear that will occur due to having to attempt to remove the bmp/bone from the dura.......so the risk of paralysis is almost guaranteed, and it would mean a lengthy rehab inpatient for many months, even if it was successful......so for now, we wait until the canal is so closed off that we are left with no other option......my canal at last measurement was only open some 3.44 mm.......the usual canal diameter is somewhere around 11-14 mm in the lumbar levels where I am having problems.....so sooner or later, I will be facing this again. This time I guess that motorized wheelchair will become a part of me, again, only this time, most likely permanently.
    Sorry for the long tale, but it is a complicated and long story......
  • Wow Sandi. That is a very sad post to read and know how terribly you are suffering. Your demeanor here is nothing but pleasant and helpful and that says a lot, considering the pain and anger you must be feeling. You haven't shown any self pity here at all. I wish nothing but the best for you and that you get your miracle.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • but I am over the self pity part of it. I take each day that I am still able to be on my own two feet as a blessing, after loosing my ability to stand for more than a few minutes, and walking becoming more and more difficult with each passing day, I consider where I am , and the fact that I am able to stand and walk as a gift.....
    It's funny how loosing or coming so close to loosing something that others take for granted, makes you appreciate the gifts of being able to do those things.
    I had to put the anger aside, or allow it to consume me, and I won't let anything get in the way of my family or what it needs......don't get me wrong, I was angry, angry that the surgeon only seemed to care when he knew that I knew, and that his only concern came about because of his fear of being held financially responsible.....
    THAT made me madder than what occurred, that his financial standing got in the way of admitting that he missed the symptoms that I had post op, and if he had listened, any of the three times that I saw him in the days immediately post op ( went home on a Saturday, was in his office first thing Monday morning, then again Wednesday and Friday ) that week, he could have prevented the damage or at least minimized it........but that was then , and this is now......
  • Sandi,

    I am so sorry for you. The butcher who did my first surgery bought himself a brand new motorcycle. On my 360 fusion, they also used BMP but, never told me, until I was home and read the discharge notes. They used an allograft on my cervical fusion ( I begged them, pre op - they wanted to go into my hip and I have osteoporosis). It was a breeze and very painless.

    Have you looked into any of the newer Laser Spine surgery procedures? I know they seem to be springing up all over the place. I don't know, how you would find a reputable one. I had my last two surgeries at Jefferson Hospital for Neuroscience in Philadelphia. They are highly rated in spinal surgery. The neurosurgeon who did my surgery was the head professor of spinal neurosurgery and the orthopedic surgeon was head of the Rothman Institute. I can email you their names, if you would like another opinion.

    I saw the pain doctor yesterday. You were right, I was in withdrawal. The admitted to under-dosing me .In fact, my husband said, I was too weak for the injection on Tuesday. The pain doctor said, he probably would have not only not given me the injection, but would have admitted me had I come to the hospital.
    They thought about increasing the Fentanyl but changed me to Oxycontin 40 mg BID instead. They said to take the breakthrough medicine for any sign of withdrawal and it will take a few days. I feel better, just wiped out.

    You are an inspiration to me! Your strength and attitude are really making me marvel!. I have been lax in my volunteering. I visit people in Nursing Homes for our Church.The old people keep asking me if I'm OK. lol. I do teach CCD. There is a lot more I can try to do. God Bless You. I will be praying for you. Our backs and legs are all in His hands, now. Who knows what he has in store for us!!!! .
    Take care and God Bless,
    Mary Anne
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