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Dilemma time

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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Topic: Dilemma time
    Posted: Jun/29/2018 at 12:28am
I’m fused from S1-L2. 4 years ago I had good spacing at L1 and great care was done to insure that nothing was done during surgery to compromise that disc space.

Despite everything, L1 has collapsed leaving me with severe right foraminal stenosis. I’m literally just going from bed to relax the back chair. QOL is crap.

My options are to do nothing or to fuse L1 to T12. Normally, the literature suggest going higher into the thoracic spine a level or two more. But I have scoliosis and this won’t work.

My OS is a family friend and highly regarded in my community and the medical field. I’m very comfortable with him and trust him. But bottom line is that this is definitely the last time I can be fused at this point in my life.

Do I go for it or do I accept the inevitable now? By that I mean trading the cane for the walker and then the wheelchair? I know it’s coming but maybe if I can endure one last fusion I can hold off for a few more years.

I’m ambivalent right now. I don’t do well post op. The pain is worse for me than child birth!!!!   I just weaned off all opioids and was handed this great gift.

Suggestions? Other options aren’t an option. I’m fully cognizant of options and trust my OS with my back and my life. He’s leaving this decision to me. So guess I am asking if you would go for it or forget it and just live in pain, knowing that another fusion is (hopefully) a longer term solution to have a better QOL for as long as possible?

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My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Bailey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Jun/29/2018 at 4:24am
Stevie,

I’m so sorry to hear this. Hugs. Not walking in your shoes, I “think” I would have to go for the surgery. You know and trust your surgeon and have had very good results from him. If he believes he can improve your QOL, the shorter term, even worse pain, could give you years of better QOL.

I know it’s easy to say for someone not in your shoes. One thought regarding pain and surgery, without the opioids already in your system, pain control with oxy or whatever they use, should be much better.

DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jun/29/2018 at 10:25am
Thanks Bailey

My family says to go for it also. I’m sick of hobbling around with a cane and doing little to nothing.

The OS said the same thing you did about pain control postop. I’m reliving in my mind how awful it was 4 years ago, but I was on at least 60mg/Oxycodone a day pre op. Now nothing. I’m also hoping that I can be much more comfortable this time, and get off the stuff ASAP!!!!

I’m also thinking about why worry how long this lasts? None of us has any guarantees on how long we have so make the best of the time we do have.

Maybe I should try to stop “thinking “ so much

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My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bluegill Quote  Post ReplyReply Direct Link To This Post Posted: Jun/29/2018 at 7:34pm
I don't have any suggestions, advice, or wisdom of any sort.  I just want to say I'm sorry.
In head-on car crash in 2006. Smashed kneecaps, broken hip, head injury,and other fractures. Daily knee pain (just a 2 or 3 or 4 on a scale from 1-10, so I feel like a wimp). Can't jog, walk long distances or stand for a long period of time. Surgery to remove bone growth on pelvis (2017). Ongoing hip pain, possibly trochanteric bursitis.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jun/29/2018 at 8:31pm
Thank you Blue

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My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dbarbeau48 Quote  Post ReplyReply Direct Link To This Post Posted: Jun/29/2018 at 9:04pm
I agree with Bailey. Your pain should be easier to manage after surgery since there is none in your system. You need to stay out of a wheelchair. Surgery is your option, the sooner the better. You are a tough cookie. You will manage to get through this.
Five knee surgeries from 1970 to 2000. Knee replacement in 2000.Spinal stenosis surgery in May of 2002. Diagnosed with Pseudogout in 2005, effecting hands, knees, and shoulders. Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007. Retired early as a high school principal. Recently, have had trigger finger surgery on both hands as well as surgery for severe bi-lateral Carpal Tunnel disease.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jun/30/2018 at 9:55am
Thanks Dick

I’m scheduled for August 1 unless there’s a cancellation earlier. But I have a painful back molar that probably needs to come out, so it needs to be done right away and then several pre op appointments in the next weeks. Time should go by fast and this will be over with!!!! Never seems to end for us spinies.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Jeff View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Jun/30/2018 at 4:12pm
I made the choice of a wheelchair because I have been told I need (1) another spine surgery to remove the severe foraminal stenosis of nerve root C5 and moderate foraminal stenosis of nerve root C6, bilaterally; (2) total hip replacement of my right hip because it has been "virtual" bone on bone since 1996 yet I've gotten used to that and I do have a wee bit of cartilage left, but my PT said I need hip replacement before knee replacement as I walk like a duck with my toes pointed outward so bad it will make recovery from knee replacement bad (3) knee replacement immediately in my right knee, (4) within a couple years, total knee replacement of my left knee which has 40% loss of joint space right now, (5) fusion of my big toe of my left foot immediately to the rest of my foot, (6) fusion of the big toe of my right foot soon after, because by x-ray the joint is severely arthritic with bone spurts growing out from it, and (7) and I'm relatively certain that if I complained, I'd be told I need L1-T12 fusion because it is the one unfused vertebrate left in my entire spine besides the C1-C2 in my neck, but it hinged such that one side of my spine is fused, and the other is not fused, so it rocks and that creates huge knots in the muscles on both sides of my spine that are constant spasms or cramps.  Otherwise, I can't explain these constant knots because there was no spinal cord damage low enough in my neck to cause motor neuron damage down in my back.  And, I have some scoliosis in my back like you. I also get occipital headaches due to the C1/C2 degeneration of the disc (last unfused joint in my C-spine) and radicular nerve pain from the severe foraminal stenosis or nerve root compression so my wheelchair doesn't do much to help some serious sources of pain, but it does limit pain from knees, hips, and feet.  Last, I also have a worn out right thumb and a very visible bone spur growing up off the dorsal side of the thumb (side with my fingernail) at the last joint before my nail, but I've been warned to NOT have any hand surgery because those bone spurs come back even bigger.  

So long story to say I said NO to any more surgeries, unless I get to the point I cannot get around anymore with my power tilt / power recline / motorized wheelchair or a walker for short distances or 2 canes for very short distances inside our home only, because I keep falling due to all these orthopedic problems and I'm not very stable even with 2 canes, plus use of canes pounds my already weak and painful arms further.  But until all that fails and I for example have excruciating pain at night that wakes me up or keeps me up, I am NOT having more surgery.  I've had problems recently with analgesia, and they had to reverse it with naloxone when they gave me too much after my knee surgery where they sewed up torn cartilage and scoped out my knee from the inside, so that is one concern.  Second, I am worried that pain management is going to be terrible given both the government pressure to underprescribe pain relievers for post op pain (HR 6 if passed incentivizes doctor to not prescribe opioids for post-op pain) and the fact that I've been on pain medicine for 6 years and there is no way I could stand even a day of lowered medicine (tried it on my own and my average daily pain rose from 6/10 to 8/10 which is when I start thinking [would never act] about suicide).  Third, I'm a high risk of serious skin or joint infections due to the Remicade I have to take to keep the inflammation from my ankylosing spondylitis down (I was starting to have heart problems when I started Remicade but it all improved once inflammation was under control, and I get iritis without Remicade, plus more joint damage and such so NOT WAY I can get off Remicade now for any surgery).  Fourth, I have so many surgeries to get everything fixed well enough to be mobile again, and any one surgery could leave me worse off than before, paralyzed, or dead, so when you talk about 6-7 surgeries, the odds of getting through all of them with success and no infection is not so great odds.

Long winded explanation and I know you don't have so many things wrong with you, but wanted you to know I've been where you are in the thinking and I am now delighted with my power tilt/power recline motorized wheelchair.  It took 6 months of fighting insurance to get it, but it is wonderful.  I can go places again, even been out to eat twice in a month which I haven't been able to do since 2014.  I feel like a guy just released from prison. 

You have helped me so much that I wanted to help you in some way, so maybe this gives you the counter-argument, so ultimately you decide what is best for Stevie.  But the wheelchair isn't so hard to get used to, it is comfortable, and I have essentially a zero gravity chair I can take anywhere I go now.  We get a large table at a restaurant so I can recline if my neck, back, or joints start hurting.  No, it does not relieve all pain, but it sure beats the heck out of canes, walkers, or even a highback reclining manual wheelchair, because I cannot self propel anymore due to damage or destroyed motor neurons to my arms and other damaged motor neurons that create knots in arm muscles, plus the radicular pain I get from the severe nerve root compression, so it doesn't help any of that, but it does keep down the pain from hips, knees, and feet.  
Ankylosing spondylitis resulting in fusion of entire cervical, thoracic, lumbar, and SI joints, osteoporosis, 5 compression fractures, severe stenosis of spinal cord & nerve root compression, cervical myelopathy, radiculopathy, bruise & permanent deformation of spinal cord, incomplete spinal cord injury, postlaminectomy syndrome of cervical region, chronic nerve and orthopedic severe pain, and bilateral carpal tunnel. Asthma, GERD, high blood pressure, high tryglycrides, diverticulosis, recurrent pneumonia, anemia, hypertension, chronic dry eye and mouth. Need hip & knee replacement and fusion of both feet. Already had 11 surgeries including 5 orthopedic & 1 neurosurgery.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jul/01/2018 at 10:27am
I can expect a wheelchair in my future, but not yet. I’m not concerned about being treated with any limits on the amount of opioids needed post op. Despite being opioid free currently my OS is very adamant that I WILL be well medicated post op and I am doing everything in my power currently to not use ANY narcotics for the next month despite the ridiculous pain I’m in from L1 sitting on L2. And, I am determined to get off them ASAP once again.

I’m somehow managing with low dose Gabapentin and Robaxin and Cannabis. For anyone reading this who uses MMJ please remember that smoking or vaping it post op is a big NO NO just like smoking tobacco due to the possibility of inhibiting fusion. But he’s given me the go ahead on any and all other methods to use it such as edibles and tinctures.

So I will go for it despite the risks and hope that I’m going to have some better years ahead for as long as possible!!

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Jul/01/2018 at 9:03pm
I wish we had that option but I think the best we can must is some type of non-CBD non-THC oil in Alabama.  Fortunately for now I am stable on opioids so pray it holds up. 

Ankylosing spondylitis resulting in fusion of entire cervical, thoracic, lumbar, and SI joints, osteoporosis, 5 compression fractures, severe stenosis of spinal cord & nerve root compression, cervical myelopathy, radiculopathy, bruise & permanent deformation of spinal cord, incomplete spinal cord injury, postlaminectomy syndrome of cervical region, chronic nerve and orthopedic severe pain, and bilateral carpal tunnel. Asthma, GERD, high blood pressure, high tryglycrides, diverticulosis, recurrent pneumonia, anemia, hypertension, chronic dry eye and mouth. Need hip & knee replacement and fusion of both feet. Already had 11 surgeries including 5 orthopedic & 1 neurosurgery.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sara1 Quote  Post ReplyReply Direct Link To This Post Posted: Jul/02/2018 at 2:51pm
Stevie isn't it necessary to have surgery because of possible injury to your spinal cord? In the meantime can you go to your warm water pool for some relief? Would using a rollator help to get around a little? It sure takes the pressure off as well as wearing a support belt or brace.

Wishing you all the best for surgery. I couldn't get out of bed without pain meds because if you have IP it's for life my Dr. mentioned that to me again I will be like this for the rest of my life. It's been 10 years for me.

I would do anything to get pain relief. Build up your stamina and do as much as you can to prepare. Hugs. Sara
DDD of lumbar spine with sciatica to left leg and foot. all lumbar discs now herniated one central herniation with exiting nerve contact.Facet joint Hypertrophy RFA for pain relief
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Jul/03/2018 at 12:54am
IP = intractable pain?  I have it for life too due to spinal cord damage.
Ankylosing spondylitis resulting in fusion of entire cervical, thoracic, lumbar, and SI joints, osteoporosis, 5 compression fractures, severe stenosis of spinal cord & nerve root compression, cervical myelopathy, radiculopathy, bruise & permanent deformation of spinal cord, incomplete spinal cord injury, postlaminectomy syndrome of cervical region, chronic nerve and orthopedic severe pain, and bilateral carpal tunnel. Asthma, GERD, high blood pressure, high tryglycrides, diverticulosis, recurrent pneumonia, anemia, hypertension, chronic dry eye and mouth. Need hip & knee replacement and fusion of both feet. Already had 11 surgeries including 5 orthopedic & 1 neurosurgery.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jul/03/2018 at 9:45am
Thank you Sara

I HATE having to go through this again, but without these fusions over the past 35 years, I would have been bedbound years ago. You are so right—-my spine is unstable without them due to disc slippage—sponylithesis and now retrolithesis at L1-L2. And I’ve had too many falls in the past year for me to ignore this. Not to mention that I can barely walk currently due to the radiculapathy into my right hip and anterior quadriceps.

I’m doing everything in my power to go into this as well as possible including taking as little of anything for pain relief as possible and eating the healthiest diet possible. Not an easy task when cooking is so painful but necessary. I’m trying to do some easy swimming at the pool in our community that’s warm.

I’m so sorry that you have had to suffer for so long. Had I not had these fusions with stabilizing hardware that have released the nerves prior to permanent and severe nerve damage that you have had, I too would be in IP. I realize that this is the last one—-due to my age and the fact that my entire lumbar spine will now be fused and my thoracic scoliosis is bound to worsen over time. But WTH—something else could kill me before that happens so I don’t focus on the future.

So I am going into this in the best shape possible and with an optimistic attitude that I will be up and in far less pain in a few months. I truly appreciate your support Sara and wish with all my heart you weren’t in such pain. Hugs

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Jul/05/2018 at 1:34am
Your surgery will be a major success Stevie.  Anyone with your track record and fighting spirit cannot be defeated.  We'll be here for you every day of the week of your surgery and recovery thereafter, day by day, so you will not do this alone.  We'll be there with you! :)
Ankylosing spondylitis resulting in fusion of entire cervical, thoracic, lumbar, and SI joints, osteoporosis, 5 compression fractures, severe stenosis of spinal cord & nerve root compression, cervical myelopathy, radiculopathy, bruise & permanent deformation of spinal cord, incomplete spinal cord injury, postlaminectomy syndrome of cervical region, chronic nerve and orthopedic severe pain, and bilateral carpal tunnel. Asthma, GERD, high blood pressure, high tryglycrides, diverticulosis, recurrent pneumonia, anemia, hypertension, chronic dry eye and mouth. Need hip & knee replacement and fusion of both feet. Already had 11 surgeries including 5 orthopedic & 1 neurosurgery.

Please donate to help Chronicpainsite.com continue to help others.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jul/05/2018 at 5:07pm
Thank you Jeff,

I appreciate your kind post, and hope this time is much easier than 4 years ago.
I will be posting more after I have all of my pre op work done and am hopefully cleared for surgery.

Thanks everyone!!

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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