shakorox
03-16-2006, 04:24 PM
Hello,
I'm still in severe pain requiring me to ambulate with a cane. I've had increasing symptoms for the last 8 years, I'm 26 now. After not having insurance I finally landed a good job in cancer research that provides good benefits. Since the first day my insurance kicked in (roughly a year ago) I've been seeing a great doctor who is a rehabilitation specialist. She's been very understanding and seems to care, however, over the past year I've failed all conservative measures to lessen my pain. PT, injections, home exercise, etc. I've even done the integrative medicine aproach. Acupuncture, guided imagery, biofeedback. It's fustrating and I don't feel like I'm getting anywere. I only want my pain low enough to allow me to function and enjoy life. I can't play sports, walk the mall, climb too many stairs, walk my dogs or anything else that requires agrevating movements. It only seems to be getting worse.
I've had the labs to rule out anything rheumatic. My Bone Scan show mild levoconvex scoliosis, CT showed sacralization of L5-S1 transverse process on the left, MRI was negative, X-ray showed the sacralization at L5-S1 on the left and spondylolysis at L5 in the right, normal EMG, positive Fabers/Patricks. All these tests are 8 months to a year old now.
My doc seems to think that my left SI joint is the source of my pain and records my "chief complaint" as Left Sacroilitis with radiculopathy she feels there is nothing else she can offer me She has tried to refer me to a multi-disiplinary pain clinic. Easier said than done. I called ten facilities and asked if they were multidisplinary (use other techniques in addition to only anasthesia based interventions), two times I was hung-up on after being told they won't give me painkillers :confused: the rest of the facilities told me that they only had anasthesiologists on staff therefor only want to poke me with needles. I finally found the closest thing to a multidisaplinary pain clinic I could figure out, an Integrative Medicine office. There they offered me something called OMT Osteopathic Manipulation Therapy and Prolotherapy. I have no idea what these are but something is better than nothing.
Yesterday I had my first appointment with the D.O. at the Integrative Medicine Office, apparently he is the only doctor who works there. It was different than any apointment I've ever had. After I presented the doc with my very complete and well organized medical records he asked me general H&P questions. Then he performed a brief physical exam which involved shaking each of my muscles and lastly he put me on the exam table an stuck eight acupuncture needles in my a$$ and lit them on fire :blob_fire yeah, I was speechless. After the visit he ussured me to the front desk to schedule my first "real treatment" visit. The receptionist told me that the doctor would like me to come in once a week for the next 4 months, however, they are booked through June they had to put me on a cancellation list for my next apointment.
So, I've been in agony for the majority of the time I've been undergoing treatment. When I didn't have insurance I used a cocktail of tylenol and NSAID's along with the occasional free sample of Ultram or Ultracet. Since I began seeing my Rehab doc she put me on regular vicodin 4xdaily. Eventualy she had me on Oxycontin 20mg 2xdaily. When on the Oxy I was able to do soo much more, I even bought a recumbant bike and rode 7.5miles every other day. In fact I felt so good I thought I didn't need the meds anymore and asked my doc to decrease my dose back to the vicodin. That was not a good idea, I haven't ridden on the bike since. Now I'm on Norco 10/325 4xdaily, but the tylenol is raising my liver enzymes (ALT) about 2 points a week. My ALT is now 120. I also had a GI bleed because of NSAID's. My rehab doc didn't want to put me back on any long acting meds until I saw the "pain guy" and he said I should be on chronic narcotics. I asked him about this at the visit and he said that he would like me off all pain meds but doesn't expect me to see any relief via his treatments for at least 6 months.
At this point I don't know where to go, who to turn to, or even what to ask. I'm in so much pain all the time and it's taking it's toll. I know there is no specific question in my rant, but I would deeply appreciate any input, advice, and/or support.
I apologize of the length and poor spelling of my post.
Thanks,
-Derek-
:wave:
I'm still in severe pain requiring me to ambulate with a cane. I've had increasing symptoms for the last 8 years, I'm 26 now. After not having insurance I finally landed a good job in cancer research that provides good benefits. Since the first day my insurance kicked in (roughly a year ago) I've been seeing a great doctor who is a rehabilitation specialist. She's been very understanding and seems to care, however, over the past year I've failed all conservative measures to lessen my pain. PT, injections, home exercise, etc. I've even done the integrative medicine aproach. Acupuncture, guided imagery, biofeedback. It's fustrating and I don't feel like I'm getting anywere. I only want my pain low enough to allow me to function and enjoy life. I can't play sports, walk the mall, climb too many stairs, walk my dogs or anything else that requires agrevating movements. It only seems to be getting worse.
I've had the labs to rule out anything rheumatic. My Bone Scan show mild levoconvex scoliosis, CT showed sacralization of L5-S1 transverse process on the left, MRI was negative, X-ray showed the sacralization at L5-S1 on the left and spondylolysis at L5 in the right, normal EMG, positive Fabers/Patricks. All these tests are 8 months to a year old now.
My doc seems to think that my left SI joint is the source of my pain and records my "chief complaint" as Left Sacroilitis with radiculopathy she feels there is nothing else she can offer me She has tried to refer me to a multi-disiplinary pain clinic. Easier said than done. I called ten facilities and asked if they were multidisplinary (use other techniques in addition to only anasthesia based interventions), two times I was hung-up on after being told they won't give me painkillers :confused: the rest of the facilities told me that they only had anasthesiologists on staff therefor only want to poke me with needles. I finally found the closest thing to a multidisaplinary pain clinic I could figure out, an Integrative Medicine office. There they offered me something called OMT Osteopathic Manipulation Therapy and Prolotherapy. I have no idea what these are but something is better than nothing.
Yesterday I had my first appointment with the D.O. at the Integrative Medicine Office, apparently he is the only doctor who works there. It was different than any apointment I've ever had. After I presented the doc with my very complete and well organized medical records he asked me general H&P questions. Then he performed a brief physical exam which involved shaking each of my muscles and lastly he put me on the exam table an stuck eight acupuncture needles in my a$$ and lit them on fire :blob_fire yeah, I was speechless. After the visit he ussured me to the front desk to schedule my first "real treatment" visit. The receptionist told me that the doctor would like me to come in once a week for the next 4 months, however, they are booked through June they had to put me on a cancellation list for my next apointment.
So, I've been in agony for the majority of the time I've been undergoing treatment. When I didn't have insurance I used a cocktail of tylenol and NSAID's along with the occasional free sample of Ultram or Ultracet. Since I began seeing my Rehab doc she put me on regular vicodin 4xdaily. Eventualy she had me on Oxycontin 20mg 2xdaily. When on the Oxy I was able to do soo much more, I even bought a recumbant bike and rode 7.5miles every other day. In fact I felt so good I thought I didn't need the meds anymore and asked my doc to decrease my dose back to the vicodin. That was not a good idea, I haven't ridden on the bike since. Now I'm on Norco 10/325 4xdaily, but the tylenol is raising my liver enzymes (ALT) about 2 points a week. My ALT is now 120. I also had a GI bleed because of NSAID's. My rehab doc didn't want to put me back on any long acting meds until I saw the "pain guy" and he said I should be on chronic narcotics. I asked him about this at the visit and he said that he would like me off all pain meds but doesn't expect me to see any relief via his treatments for at least 6 months.
At this point I don't know where to go, who to turn to, or even what to ask. I'm in so much pain all the time and it's taking it's toll. I know there is no specific question in my rant, but I would deeply appreciate any input, advice, and/or support.
I apologize of the length and poor spelling of my post.
Thanks,
-Derek-
:wave:
Sponsor
Shoreline
03-16-2006, 05:18 PM
Hi Derek, Have you had a disco gram and Bone scan? Sticking needles in your a@@ and causing pain really doesn't prove anything to me other than he knows nerve placement.
You have to be your own advocate and ask questions, LIke what did you just do and what does that tell you and how are you planning on treating me. You do have choices. All yiu have to do is take docs off the pedestal and realize all they are doing is giving you their opinion. Hopefully their opinion is correct but you really didn't cover diagnostics or talking to surgeons. Which would certainly be something I would be looking for if your not improving. Perhaps someone was wrong and you don't have to live in pain?
Have you tried an SI joint belt if their convinced that's the problem? I would be upset that nobod could give me an answer as much as I would be mad about the treatment of pain.
Pain meds obviously help and I'm sure you could find a doc willing to prescribe Oxy or something else. If you don't get to the cause or make an effort to correct the problem, you will be kicking yourself in the backside if you find yourself facing surgery. All you have effectively done is jack your tolerance up which makews post op a mother. Keep looking for that DX that makes sense, that can be seen or explained.
1 year sounds like a long time, but I have seen too many people let their GP make the surgical call and refer them to PM who agrees you don't need surgery when the patient has never seen a surgeon? Why would someone take a GP or physiatrist surgical opinion as anything more than an opinion from a non sepecialist in that field looking to make some bucks on Prolo therapy. It really is anything to avoid surgery but if you need surgery, you will end up having it at some point.
The only difference is how much BS you go through prior to surgery and how much weight you give the opinion of one or two docs condemning you to a life of chronic pain. I'm not a big advocate of surgery, but these days, GP's order the MRI when you not conforming to the medical model and then rely on the radiologist opinion to refer you to a surgeon. Most surgeons don't even bother reading the rad.. report, they want to see for themself.
I would suggest getting out of your present loop of docs and get an opinion from a NS or OS before doing anything as desperate as prolo or before you let one or two docs tell you this is it when you don't even know what "IT" is.
Good Luck, Dave
You have to be your own advocate and ask questions, LIke what did you just do and what does that tell you and how are you planning on treating me. You do have choices. All yiu have to do is take docs off the pedestal and realize all they are doing is giving you their opinion. Hopefully their opinion is correct but you really didn't cover diagnostics or talking to surgeons. Which would certainly be something I would be looking for if your not improving. Perhaps someone was wrong and you don't have to live in pain?
Have you tried an SI joint belt if their convinced that's the problem? I would be upset that nobod could give me an answer as much as I would be mad about the treatment of pain.
Pain meds obviously help and I'm sure you could find a doc willing to prescribe Oxy or something else. If you don't get to the cause or make an effort to correct the problem, you will be kicking yourself in the backside if you find yourself facing surgery. All you have effectively done is jack your tolerance up which makews post op a mother. Keep looking for that DX that makes sense, that can be seen or explained.
1 year sounds like a long time, but I have seen too many people let their GP make the surgical call and refer them to PM who agrees you don't need surgery when the patient has never seen a surgeon? Why would someone take a GP or physiatrist surgical opinion as anything more than an opinion from a non sepecialist in that field looking to make some bucks on Prolo therapy. It really is anything to avoid surgery but if you need surgery, you will end up having it at some point.
The only difference is how much BS you go through prior to surgery and how much weight you give the opinion of one or two docs condemning you to a life of chronic pain. I'm not a big advocate of surgery, but these days, GP's order the MRI when you not conforming to the medical model and then rely on the radiologist opinion to refer you to a surgeon. Most surgeons don't even bother reading the rad.. report, they want to see for themself.
I would suggest getting out of your present loop of docs and get an opinion from a NS or OS before doing anything as desperate as prolo or before you let one or two docs tell you this is it when you don't even know what "IT" is.
Good Luck, Dave
shakorox
03-17-2006, 09:06 AM
Thanks Dave,
Youre correct, I've never seen a sergeon. Almost every time I've mentioned seeing a sergeon I was told "not to go there". The only time someone suggested was when I went to my PCP for a checkup and she said I should have a surgical consult, then she gave me a couple of cards. I've been leary about going to a sergeon because my mom had back surgery and was subsequently in a hospital bed for ten yeas unable to walk. I'm sure times have changed since then.
Youre correct, I've never seen a sergeon. Almost every time I've mentioned seeing a sergeon I was told "not to go there". The only time someone suggested was when I went to my PCP for a checkup and she said I should have a surgical consult, then she gave me a couple of cards. I've been leary about going to a sergeon because my mom had back surgery and was subsequently in a hospital bed for ten yeas unable to walk. I'm sure times have changed since then.
Shoreline
03-17-2006, 11:42 AM
Hey Sak, There are many new minimally invasive techniques and then some very invasive surgie. Untill you know what the problem is, which your not going to get that info from a physiatrist or some Voodoo doc pushing Prolo on every patient. Everything is just a stab n the dark or backside. ;) Prolo fell by the wayside before it even became mainstream, it causes excessive scaring, arachnoiditis and the outcome can be as etreme as your moms botched surgery.
I had 3 back surgeries go bad and fortunately LA pain meds had become available during all that mess and after 7 years of jumping through every hoop offered it was opiates that got the hospital bed out of my den after the last 6 level fusion failed and hardware snapped. Surgery horror stories are easy to find but not the norm. There is no IT forum for people to come together and talk about how great their sugrgery went.
Unfortunately when you start looking into pain management, those are the docs that clean up the messes that are made, so the likely hood of seeing someone with a succsful surgery at your physical med docs or the Voodoo doc aren't very likely. So it's easy to support the opinion you shouldn't go there no mattr what it takes to manage your pain? Does that make sense. Foks that had surgery and moved on with their life don't go to the rehab doc or Voodoo doc for prolo.
You can look for docs that are trained in the less invasive surgical methods. Not every surgeon is capable of doing the newer methods. If they learned to do a full laminectomy jut to give them plenty of room to work to trim a bulging disc, that's how they tend to aproach every disc surgery. If a doc was trained to do micro discectomies or arthroscopic back surgery he will be looking for the least invasive method to repair a problem. If you ask 10 surgens how to fix a back problem and you will probably get 5 different answers or told to wait untill the pain is unbrearable.
Unfortunately while your waiting and if you use opiates you may be able to put off surgery for some time, but pain can also imprint into the nerve pathways over time if the problem isn't fixed. If this happens even a surgery that apears completely succesfull, won't do a thing for pain that's been imprinted.This is part of the gateway theory which is well proven. Conditions like RSD or Chronic regional pan syndrome flurish when the actual problem isn't corected. Basicaly the longer you wait, the less likely you are to have a positive outcome, that's the downfall of pain management. You can spend years jumping through every hoop and cranking your tolerance up to opiates and during that time the window of opportunity to corretct the problem slips away.
I you go see a chiropractor, he's going to recomend chiro to avoid surgery, If you see a PM doc that makes lots of money doing Prolo, or nerve blocks or gives everyone 3 epidurals, guess what he's going to suggest.
You really need to get a surgeical opinion and find the source of pain when conventional therapy and the not so conventional methods aren't helping. If it 's a mechanical deffect that can be corrected, then you look to different surgeons to find what's the least invasive aproach and best method to correct the problem.
I meant to say Meylogram, not bone scan with the Disco gram. The advantage of a meylo is they inject dye and tilt you in every direction on a table and shows what weight bearing does to the discs under floroscopy. These tests can be much more telling than static veiws of a problem that may only manifest when you flex, extend or just stand.
The way sepecialist veiw their own field. Even if your PM doc said you need surgery, it doesn't mean a surgeon would agree and be willing to do it. So their opinion really carries no weight in another specialty like surgery. See a surgeon and at least be informed before you let a couple docs condemn you too life in their care. Docs overstepping their bounderies is really a pet peeve of mine. Evry GP is now a practicing psychiatrist because of HMO's, Now their getting into PM. Rehab docs giving surgical opinions just seems a little back asswards.
Pain meds will always be an option but if you could fix something and toss the cane in 6 months and not look back. I would think the reward may be worth the potential risk. You are right, things can certainly get worse, But I haven't met a single long term chronic pain patient that is truly happy with their care and wouldn't choose a cure in a hot minute over another month spent on meds. It's not that docs aren't trying to manage pain or using opiates and advanced techniques like morphine pumps and spinal cord stims.
I have an implanted synchromed pump that delivers dilaudid to my spine. To someone new and struggling to find relief it sounds like the Shizba, but in reality the best it can do is relieve 50% of my pain and that still leaves me disabled. 50% pain relief to one person may mean they can return to work and be relatively comfortable. To me it means my wife doesn't have to hold me up in the shower and I can get the dishes done by taking a break every
3-4 minutes.
My perspective is a little different than someone looing for some form of relief when nothing is being offered. I just know the limits of what meds can do. I have to find a balance between acceptable relief that allows me to function but doesn't leave me feeling impaired and sleeping all day. Pain management isn't a cure, it's something to help cope with problem that can't be corrected.
Get some surgical opinions and see if your problem can't be corrected before letting docs tell you there is nothing that can be done other than their method to help manage pain. Keep in mind, a surgeon seeing you for the first time, may want to repeat what you have already done as far as more PT, epidural steroids, just the normal drill so that he's confident surgery is the only option.
Patients that finally beg for surgery when they have already gone the PM route and are presently taking large amounts of opiates have a very hard time finding surgeons willing to risk their succes rate on a patient already dependent on opiates. Those that do have surgery after years of PM also have problems with post op pain control unless they have their PM team in on the post op care. Most PM docs don't have hospital privlidges unless your seeing one through a hospital clinic. Private practice and private clinic PM docs have no influence over a surgeon or what goes on as far as post op pain control in a hospital. You are at the mercy of your surgeons comfort level.
There is just a lot to consider. I understand the imediate need for pain relief, but don't give up on finding a fix at the age of 28.
Good luck, Dave
I had 3 back surgeries go bad and fortunately LA pain meds had become available during all that mess and after 7 years of jumping through every hoop offered it was opiates that got the hospital bed out of my den after the last 6 level fusion failed and hardware snapped. Surgery horror stories are easy to find but not the norm. There is no IT forum for people to come together and talk about how great their sugrgery went.
Unfortunately when you start looking into pain management, those are the docs that clean up the messes that are made, so the likely hood of seeing someone with a succsful surgery at your physical med docs or the Voodoo doc aren't very likely. So it's easy to support the opinion you shouldn't go there no mattr what it takes to manage your pain? Does that make sense. Foks that had surgery and moved on with their life don't go to the rehab doc or Voodoo doc for prolo.
You can look for docs that are trained in the less invasive surgical methods. Not every surgeon is capable of doing the newer methods. If they learned to do a full laminectomy jut to give them plenty of room to work to trim a bulging disc, that's how they tend to aproach every disc surgery. If a doc was trained to do micro discectomies or arthroscopic back surgery he will be looking for the least invasive method to repair a problem. If you ask 10 surgens how to fix a back problem and you will probably get 5 different answers or told to wait untill the pain is unbrearable.
Unfortunately while your waiting and if you use opiates you may be able to put off surgery for some time, but pain can also imprint into the nerve pathways over time if the problem isn't fixed. If this happens even a surgery that apears completely succesfull, won't do a thing for pain that's been imprinted.This is part of the gateway theory which is well proven. Conditions like RSD or Chronic regional pan syndrome flurish when the actual problem isn't corected. Basicaly the longer you wait, the less likely you are to have a positive outcome, that's the downfall of pain management. You can spend years jumping through every hoop and cranking your tolerance up to opiates and during that time the window of opportunity to corretct the problem slips away.
I you go see a chiropractor, he's going to recomend chiro to avoid surgery, If you see a PM doc that makes lots of money doing Prolo, or nerve blocks or gives everyone 3 epidurals, guess what he's going to suggest.
You really need to get a surgeical opinion and find the source of pain when conventional therapy and the not so conventional methods aren't helping. If it 's a mechanical deffect that can be corrected, then you look to different surgeons to find what's the least invasive aproach and best method to correct the problem.
I meant to say Meylogram, not bone scan with the Disco gram. The advantage of a meylo is they inject dye and tilt you in every direction on a table and shows what weight bearing does to the discs under floroscopy. These tests can be much more telling than static veiws of a problem that may only manifest when you flex, extend or just stand.
The way sepecialist veiw their own field. Even if your PM doc said you need surgery, it doesn't mean a surgeon would agree and be willing to do it. So their opinion really carries no weight in another specialty like surgery. See a surgeon and at least be informed before you let a couple docs condemn you too life in their care. Docs overstepping their bounderies is really a pet peeve of mine. Evry GP is now a practicing psychiatrist because of HMO's, Now their getting into PM. Rehab docs giving surgical opinions just seems a little back asswards.
Pain meds will always be an option but if you could fix something and toss the cane in 6 months and not look back. I would think the reward may be worth the potential risk. You are right, things can certainly get worse, But I haven't met a single long term chronic pain patient that is truly happy with their care and wouldn't choose a cure in a hot minute over another month spent on meds. It's not that docs aren't trying to manage pain or using opiates and advanced techniques like morphine pumps and spinal cord stims.
I have an implanted synchromed pump that delivers dilaudid to my spine. To someone new and struggling to find relief it sounds like the Shizba, but in reality the best it can do is relieve 50% of my pain and that still leaves me disabled. 50% pain relief to one person may mean they can return to work and be relatively comfortable. To me it means my wife doesn't have to hold me up in the shower and I can get the dishes done by taking a break every
3-4 minutes.
My perspective is a little different than someone looing for some form of relief when nothing is being offered. I just know the limits of what meds can do. I have to find a balance between acceptable relief that allows me to function but doesn't leave me feeling impaired and sleeping all day. Pain management isn't a cure, it's something to help cope with problem that can't be corrected.
Get some surgical opinions and see if your problem can't be corrected before letting docs tell you there is nothing that can be done other than their method to help manage pain. Keep in mind, a surgeon seeing you for the first time, may want to repeat what you have already done as far as more PT, epidural steroids, just the normal drill so that he's confident surgery is the only option.
Patients that finally beg for surgery when they have already gone the PM route and are presently taking large amounts of opiates have a very hard time finding surgeons willing to risk their succes rate on a patient already dependent on opiates. Those that do have surgery after years of PM also have problems with post op pain control unless they have their PM team in on the post op care. Most PM docs don't have hospital privlidges unless your seeing one through a hospital clinic. Private practice and private clinic PM docs have no influence over a surgeon or what goes on as far as post op pain control in a hospital. You are at the mercy of your surgeons comfort level.
There is just a lot to consider. I understand the imediate need for pain relief, but don't give up on finding a fix at the age of 28.
Good luck, Dave
trowftd3
03-17-2006, 01:34 PM
I don't have much in the way of advice. Just listen to Dave...he is the voice of reason around here. I agree with him; if there are a few things you haven't checked out...check them out. Just because you go see a surgeon doesn't mean you have to have the surgery. If nothing else it's another page in your chart that says you have tried absolutely everything when it comes time to look for narcotics.
I also know that it's very, very hard to think clearly and objectively when you have had untreated pain for so long. I think Dave said this the other day too, it's not the amount of pain but the length of the pain that is so horrible. I've always said this and try to explain this to my family...it hurts when I breathe and there is no way I can stop breathing to make it stop hurting and it's the relentlessness(however it's spelled) of the pain that drives me insane.
After days, hours, weeks, whatever of untreated pain you start to go in panic mode.
Anyway, good luck to you. Take care and know that we are here to listen and in Dave's case to actually help. ~Mush
I also know that it's very, very hard to think clearly and objectively when you have had untreated pain for so long. I think Dave said this the other day too, it's not the amount of pain but the length of the pain that is so horrible. I've always said this and try to explain this to my family...it hurts when I breathe and there is no way I can stop breathing to make it stop hurting and it's the relentlessness(however it's spelled) of the pain that drives me insane.
After days, hours, weeks, whatever of untreated pain you start to go in panic mode.
Anyway, good luck to you. Take care and know that we are here to listen and in Dave's case to actually help. ~Mush
shakorox
03-19-2006, 12:21 AM
Thank you "Dave the Wise". It's realy encourging to hear what you and others on this board have to say. I did call my rehab doc and explained to her wat happened to me at the Intagrative medicine pain clinic, as far as the accu-incense and the prolotherapy :rolleyes: . I made an apt to speak with her directly to hash out another plan of action. She doesn't feel comfortable treating me with chronic narcotics, afterall thats not what she does. But she said she will help me get through until I get on the right path. I'll mention to her those tests that you suggested, they sound reasonable. I am going to consult a sergon as well and see if they have anything to offer.
In the meantime I'm gonna leave this post short, I'm on a relaxing vacation with my beautiful supporting wife. Today is our one year anniversary. Man time goes by fast. I'm just gonna take it easy here in the Smoky Mountians one day at a time. It's nice to get away from it all for a few days.
I'll check back in with "ya'll" (I'm in Kentucky now) soon. Till we post again :wave:
Thank you
-Derek-
BTW Dave I'm 25 not 28, but I do feel much older if it's any concellation. ;)
In the meantime I'm gonna leave this post short, I'm on a relaxing vacation with my beautiful supporting wife. Today is our one year anniversary. Man time goes by fast. I'm just gonna take it easy here in the Smoky Mountians one day at a time. It's nice to get away from it all for a few days.
I'll check back in with "ya'll" (I'm in Kentucky now) soon. Till we post again :wave:
Thank you
-Derek-
BTW Dave I'm 25 not 28, but I do feel much older if it's any concellation. ;)