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2 Spinal Fusion Surgeries, Scoliosis and Arthritis
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Bayareamike posted:
need some guidance from someone who is not emotionally involved in my medical dilemna. I've had two spinal fusion back surgeries (both on L4,L5,S1) and a total right hip replacement within the last 3 1/2 yrs. Over the last several months I have again experienced shooting leg pain, aching and numbness in my legs. An MRI showed further degeneration in L3/L4 and spinal stenosis as being the probable culprits.

The surgeon suggested that to repair L3/L4 might not be the right thing to do (domino effect) since I may have to repeat the process every couple of years. Further, he said that since there was some degeneration in the neck as well (currently w/o pain) and scoliosis present that he somewhat favors putting a rod in my back the full length of the spine (basic scoliosis surgery). This is just beyond my mental capacity at this time anyway. I'm now going back to PT and taking a pilates class to get some hopeful relief.

I'm 65 years old and up until the age of 60 was in great health; I cycled, ran marathons, lifted weights, etc.

I'm just looking for anyone who can give me some advice that I can put into the "mental hopper" that will give me more information so that I can make the best decision.

Time is the greatest gift you can give someone. Thank you
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davedsel57 responded:
Hello, and welcome.

I'm sorry to read of your struggles. I have been managing chronic pain due to multiple serious spinal problems for over 30 years. I have never been a candidate for surgery due to the complex issues I live with.

The first recommendation I have for you is to do your research and be familiar with all your options. There is a Tip that I created at the top of this WebMD Back Pain Support Community that lists some links to good sites for spine information. There is a second Tip I created that lists the recommended steps for diagnosing and treating back pain. You would benefit by reading through these Tips and going to those spine sites and learn all you can.

Read through the posts in this community to see our stories and experiences and how we are managing our pain. I'm sure you are aware of the poor statistics regarding the success rates of any spinal surgery - 50% for pain relief and 80% for improving functionality. In many cases one surgery does lead to another ans so on. If you do consider surgery, get the opinions of several spine specialists such as orthopedic surgeons and/or neurosurgeons.

I understand your frustration and confusion, and pray you can find the answers and relief you need.
Click on my user name or avatar picture to read my story. Blessings, -Dave
 
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dianer01 responded:
Hi,

Welcome, you have come to a good place. I am sorry you are dealing with so many issues.

I can see why the surgeon might say repairing L3/L4 might not be the best solution but a rod the full length of the back is exteme to say the least! I would believe this would limit most motion and many activities.

You will have to weigh the pros and cons including there is no guarantee surgery will relieve pain, in fact it could increase pain. Finally I think I would be taking my mri and getting a second and possibly third opinion.

my best to you
 
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Nomaan Ashraf, MD, MBA responded:
Im sorry that you are having so much trouble. Unfortunately it is impossible to truly say how much of your spine (ie: how many levels) should be incorporated into the surgical construct (ie: just L3-4 vs more levels) without review of the xrays, MRI, and your exact physical exam findings. Knowing which distribution your leg pain is in (front of thigh, back of leg, etc) should allow your surgeon to tell which nerve root or roots are being compressed which should give a sense of where your significant pathology is. It is however, not a good idea to have multiple levels of your spine fused below scoliotic levels which are unstable for the reasons you mentioned which may be the reason he is suggesting more extensive surgery. My advice would be to obtain another opinion from someone that can examine you and also review all of your imaging studies. The decision of how much or how little surgery to perform really is a complex process that requires a comprehensive look at you, your health, your imaging studies, and your symptoms.
Good luck
 
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JohnIrvine responded:
I am a male, 60 years old that had an internal/external spinal fusion at levels L4, L5 and S1 about 20 years ago. I'm now having the same pain as I was before the surgeries - and to keep this short - went into a chronic pain clinic where I'm now on a maximum dosage of Vicodin with 15 mg Morphine for the flair up daily. Been holding this pattern for about 2 years now. I feel it's better than the surgery - for however long I have left. What I used to be able to do, exercise, ride bikes, lift weights, take day hikes is all history and never to be done again.......I can waddle around in a swimming pool or spa and that's about it.
 
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franmary responded:
also had 2 spinal fusions years ago, did not have any replacements though. surgeons have not suggested sugery for me, they all say no more surgery for you.(3 different spine surgeons) i would definitely see another surgeon.,and get another opinion. PT sometimes helps me for awhile. what did help me this year, was a trigger point injection,better than PT.
 
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sewell44 responded:
Bayareamike I can relate to your surgery . in the last 4 years i have had 6 spine surgeries, a right hip replacement, knee surgery and lung surgery among others totaling 12 surgeries. My spine is currently fused from C4 thru L4. I do have the rod in my spine or several connected together, had a broken neck, you name it., Now in your shoes , I would go for fixing L3/4 and freeing up all the lumbar nerves and maybe laminectomies. i would not want to rush into the large scoliosis surgery. I did have it! But mine was for kyphosis that was interfering with my breathing as well as scoliosis. I already have a severe lung deficit as a result of one spine surgery and can not loose any more.

I am 54 and was a marathon runner and mountain trail runner, swimmer etc. until the last 2 1/2 years. It is difficult to see my limitations right now.(i just had lumbar surgery 4 weeks ago)

I would not do anything to a degenerated cervical area with no pain,.In fact my first surgery was a cervical fusion of C4-7. My surgeon and i waited until my arm became weak before surgery. The pain was not enough, so i would definitely wait on that one. I too was at physical therapy to try to get some relief.

Another thing i am wondering about is if you have had any epidural steroid injections, they just helped me so much with some horrible leg pain,
good luck, i hope this helps some
 
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Bibliogirl responded:
Mike, I can feel your pain. Literally. I was posed the same option two years ago. My internist told me NOT to do this surgery-- that I could end up in a wheel chair. I spoke with several people who had it and are now pain free--BUT you will only be able to "hinge" from the waist-- for an athelete such as yourself, I think it would be awful. Also, beware becoming a case study on some surgeon's website. I had four surgeries last year to put in an electrical stimulator-- ending in a staph infection so that is out. I am waiting for a more flexible rod to be developed before doing the surgery. I also cannot put my family through a 10-hr. operation with such a long recovery period. I am 60 & go to the gym every day to stretch out the muscles-- feels better being with other people, too. Mayo turned down my case. I rely on minimal painkillers during the day, discovered a body-length fleece heat pad from Massage Warehouse which I go to every afternoon, and after an interview with Roger Ebert, am buying a zero-gravity chair to keep legs elevated comfortably higher than the heart. Hope some of this helps! Keep fighting-- you sound like a strong guy. If you do decide on the surgery, the guy I would go to came recommended and is in San Diego or La Jolla-- cannot remember his name but a google search should turn him up...
 
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susaninseattle responded:
I am not a health professional, but I have a somewhat similar situation. I was 36 when I was diagnosed with degenerative disc desease, "failed back syndrome", osteophytes (bone spurs) thru all regions of my back, and stenosis. My orthopedic surgeon told me that my MRI looked like a 60 year old spine. I have had two surgeries on lumbar region, and one on my neck. I have tried injections, chiropractic care, physical therapy, exercise, medications. I have permanent numbness in my right leg, and frequent numbness in left leg and arms.
Medical professionals have told me that further surgery will not benefit, injections would give limited (1-3 months) of relief, and I am not able to get proper pain management care. I am now 50 years old, disabled and dealing with it day to day. Some days I walk with a cane, others I am fairly active. The physical activities I do, many are beyond what doctors said I would be capable of achieving...a lot is through mental adjustment and determination. I have found swimming, and Tai Chi, and some yoga to be helpful.
Good luck in finding relief and lack of pain.
 
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guitarbandit responded:
have you talked to your doctor about a spinal cord stimulater yyou can actually try this on the outside of your body for 3 to 7 ddays to see if it works then they insert it into your body I have had 2 spinal fusions my last one on 8/29/11 if this fusion doe's not work thats my next step good luck I know how you feel I have degenerative disk disease and spinal stenosis.
 
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tupper99 responded:
I am a nurse and have had the fusion that your doctor is suggesting. That was in 2002 and I want to tell you to this day, I have not regretted it. The pain was a 10 on a scale of 1-10. Nothing relieved the pain. I was in fear of getting addicted to pain pills. There are some limitations that I am sure he has told you about; you are not as flexible. To get something from a lower cabinet, I need a (reacher) assistive device, or someone to help. My husband in comparison had a disectomy performed on his back in your same area without the use of rods. They did use screws and plates. He is now needing additional surgery like you. My surgery was through the abdomen as well as the back to get a better fusion. I have never regretted my choice.
 
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auntiette replied to susaninseattle's response:
I was 15 years old when I was diagnosed with scoliosis. Almost immediately I had a spinal fusion from T8 thru L-2. No rod. But I have had limited mobility with that portion of my spine fused. I went on to marry, have children, have a career in daycare/preschool. But in my 40's the pain became worse. By age 49 I was applying for disability. I am now 55. I underwent spinal epidurals, which did not work for me. My MRI's show spinal stenosis, degenerative disc disease, arthritis, bone spurs, and I have nerve damage down both legs, sciatica.....alot of pain. I have had PT from time to time. I can't walk very far without a cane. I have radiating pain into my hips. X-rays show I have spurs in my neck but I am not experiencing any pain or nerve problems there. The main issues are from L3-S1. I consulted a spinal surgeon and he told me that I would have to lose at least 50 pounds before he would consider surgery (and he told me I would have to starve myself since I could do very little as far as exercise to lose the weight). Then if I wanted surgery he would fuse the lower remaining discs and drill screws into my hips to stabilize it further. I didn't want to lose more of my mobility and have months of recuperation with no guarantee of success. I have lost up to 70 lbs about 3 times only to gain it back. And it has made no difference in my back problems. My father had similar back problems and my mother has cervical fusions (3).

The only pain reliever that works for me is Percocet and it has been like pulling teeth to get anything but Lortab for years. Now my doctor thinks I may have fibromyalgia because of the all over pain I experience. Not much fun to look forward to in my future. I have tried to stay involved through volunteer work so as to battle my depression issues.

I have empathy for anyone struggling with back pain! It has been over 30 years of struggle and sometimes it really gets to me emotionally.
 
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mrfun3232 responded:
Dear Bayareamike,

I have a very similar situation as you, and I feel your pain!

I was like you, I was very physically fit, I was a ski instructor for years, worked out with weights, ran, and stay healthy most of my life. I made one huge mistake, I couldn't quit smoking!

I completely feel apart at age of 60. First was a right hip replacement (which still gives me a lot of pain), then a spinal operation to repair L-1, L-2, L-3,. I was diagnosed with DDD, Spinal stenosis , and osteoarthritis. After about 6 months the pain start becoming unbearable again, I thought it was the cause of my hip replacement, my Nero-surgeon told me, (after 3 trips to his office) it was due to my hip, and to go see my hip Dr. My hip Dr. told me it sounded like my back, and ordered an MRI, he was right. My hip Dr. called me, and said I must report to my Nero-surgeon immediately becasue it sounded serious. Come to find out my recent spinal surgery didn't work, and the screws were coming out, and didn't show up on my x-rays from my NS. I have great doubts about my NS now. Well, in one 4 hr operation they had to go back in and repair 1, 2, and 3, plus fix L-4, and L-5. So I had all of my lumbar fixed in one operation. Before all this I tired all the recommended treatments, rehab, spinal injections, exercise, and I knew the pain was way beyond what they were telling me, but no one believed me.

Well I am 63 today, and my life as it was, is over. The pain in my back is so bad, I can't wash my dishes, walk a half a block, not to mention do any kind of work. Most of my problems stem from the quality of treatment I had from my doctors. I highly recommend it you can afford it or have great insurance to get a good doctor. The real good Dr's. don't take Medicare, and I have no money. My mobility is severely limited, and almost keeps me from driving, as I can't look over my shoulder any more.

I can't tell you what to do, as we are all different. All I can say is put off any operation until the pain is dangerous.

I waited so long, that now my feet are both numb, and if I had waited any longer, my legs would of been numb too. My legs ached every day. I had to wait two years after my disability to get any insurance because I worked hard all my life, and didn't qualify for Medicaid, which I would of gotten instantly, completly free. So people that don't work, get the rewards! I had to stay on strong narcotics, and walk on a walker until I could get the insurance.The government made me wait so long to get my insurance, I became addicted to pain killers, now the make it very difficult to get them because of government regulations, go figure! A whole new chapter.

I am sorry, but there is no easy answer. I know my lifestyle had a lot to do with it, but I have few regrets. I wish you luck, and give you my blessings, to be brutally, honest, you are in for a long, hard road, no matter what. Having spiritual belief has helped me a lot, and not having that, I could not have made it.

God Bless
 
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cweinbl responded:

I'm guessing that your culprit is degenerative disc disease, secondary to congenital central canal stenosis. My first disc herniation was at age 17 (L5-S1). Since then two more discs have herniated. I've had four failed spine surgeries, including multilevel fusion (L3 to S1). I had to retire at age 51 and I am barely able to sit, stand and walk now, at 58. So, I have a pretty good understanding of spinal anatomy and surgical procedures.

1. The success rate for lumbar spinal fusion is about 60%. For 21st-century surgery, that is a deplorable outcome. The success rate for microsurgery (discectomy) is only slightly higher. In essence, the odds are bad and each surgical procedure will create more and more fibrosis (scar tissue). Fibrosis can impinge a nerve root, creating lifelong pain. So, even if the surgery is a success, you can end up with as much or more pain later from scarring. My last myelogram resembled a road map of New Jersey from all of the scar tissue.

2. It's true that having a discectomy or fusion at one level creates added pressure on the level above. My L4-5 disc herniated just four months after I had L5-S1 removed. So, yes, if you have L3-4 removed, it will create more stress on L2-3.

3. I'm not at all surprised that you would have degenerative features in your cervical spine. The same thing happened to me and to my father. They don't call the disease "degenerative" for nothing. At some future point, you will likely have a herniation there too. The good news is that disc replacement has been performed successfully for cervical surgical interventions for the past two decades. Most insurance plans now cover it. With disc replacement, you achieve just as much stability as with traditional or instrumental fusion, but with much more mobility and range of motion. Thus the success rate is somewhat higher, but not dramatically higher. I expect to need it one day. Unfortunately, the lumbar spine must absorb much more weight. So, it could be a few more years before we have disc replacement at that level.

4. What I found missing from your post is anything about participating in comprehensive pain management. Have you been enrolled in a comprehensive pain management program? By comprehensive, I mean a program that is not an injection mill. Many so-called pain management programs masquerade as such, but offer nothing but injections. Physicians can earn a great deal more money by having patients come back for repeated injections, than they can earn with services like TENS, biofeedback, PT, kinesiotherapy, corset, brace, decompression, hypnosis, meditation or other forms of pain management. If you have not done this, I urge you try. I can reduce my pain by at least 20% at any time with biofeedback alone. The mind-body connection is powerful; you can train yourself to experience less pain.

5. If you have tried the two dozen or so options at comprehensive pain management program and all of them have failed, then you will have two options left. One is the spinal cord stimulator. The other is the intrathecal infusion pump. Both options require surgery to implant and to remove. Since all surgery entails morbidity, you should take great caution before undergoing this. These two options also have a fairly poor outcome, with success measured at between 40% and 50% (40% for patients with spine surgery; 60% for patients with no prior spine surgery).

Finally, just so you'll know that I am not making these things up, you can read about the results of all major forms of spinal interventions here: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf .
If you need more information, or just wish to commisserate, I can be reached at csw2@bex.net .
 
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Sherada responded:
Try researching RFA (radio frequency ablation) It has relieved my spinal stenosis pain. Had it done on left side of spine only...will have other side done soon. You need to get in touch with a good pain management doctor who can offer you more options in place of surgery. I, too, have had tow spinal surgeries with fusions.
I'm located in Rochester, NY and work with the neurosurgery medicine and pain management group from the University of Rochester (Strong Memorial Hospital)


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