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Failed Fusion...Now What???
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HighOct4ne posted:
Hi everyone...my name is Chris. I have been suffering from lower back pain for the past 12 years. I was diagnosed as having degenerative disc disease (spondylolysthesis) which also resulted in severe sciatica. I have tried many different remedies to help relieve me of this pain, including back braces, tens units, hot/cold packs, physical therapy, massages, different types of narcotics (which offer a little relief) and most recently, a spinal fusion. I had the surgery (laminectomy and L-5/S-1 fusion) in November of 2011 and thought everything had gone as it was supposed to. About 5 months after the surgery I began experiencing the same pain as I had before the surgery, and recently I have been in more pain than I have ever been in. The "geniuses" that have been treating me all along (for the past year) said (as a result of numerous x-rays and even a CT scan) that everything was fine, and they didn't know what was wrong. Sooo... I decided to go to a different pain management clinic and they confirmed I had a broken screw and my spine never fused. I didn't know what to think...all this time I had believed the doctors I was seeing before (that everything was fine). None of them believed me, and just kept dismissing my claims. Needless to say, it was frustrating to say the least. Anyways... After talking to the "new" doctor, he said I ultimately have 3 choices: -Stay on (possibly increase/change) narcotics (which I really don't prefer to do). -Go forward and try the SCS and see if it offers any type of relief. Or... -Have another surgery to try to attempt the fusion. This requires going in and removing all the original hardware, and replacing it with (possibly different) hardware. However, the surgeon explained to me if I elected to have a second surgery, my career (as a corrections officer) would most likely be over. I'm only 32, and never been in a life altering decision like this before. My wife has been supportive, and pretty much convinced me to at least try the SCS... but if I eventually have to have the surgery ( to add stability to my spine) wouldn't I be better off to get it now??? I'm new to the forums, but would like to get some advice from those who actually experienced issues such as this and could possibly offer a different perspective. Thank you all very much for reading my post, and thanks in advance for any advice you can offer. God bless!!!
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davedsel57 responded:
Hello.

I've been reading your post and taking some time to think before replying (always a good thing. ).

Surgery, of course, is always a last resort for spinal treatment. Success rates are about 60% effective for pain relief and 80% for functionality. The decision as far as when in your life to have the surgery is difficult but needs to be made after thorough research and discussions with your doctors. You should get opinions from several spinal orthopedic surgeons and spinal neurosurgeons.

Do your research. There are several good sites on the internet that provide excellent information regarding spinal problems and treatments. Here are some links:


WebMD Back Pain Health Center: http://www.webmd.com/back-pain/default.htm

Spine-Health: http://www.spine-health.com/

Spine Universe: http://www.spineuniverse.com/

I hope I have been some help as you try to make this difficult decision.
Click on my user name or avatar picture to read my story.

Blessings,

Dave
 
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77grace responded:
Hi and Welcome,
Wow ,it sounds like you have alot going on and alot of Pain!I can empathize,I also suffer from Chronic pain in my neck and back!Mine is because of tumors that grow on the nerves on my spine amoung other stuff!Anyway in answer to your question about Surgery,I thing I would agree with you and do it while you are younger!But that is of course only if there is nothing ekse that will help!!As you know with Surgery sometimes its works and sometimes it makes thing worse!
What else have you tried for pain??
Best of luck ,77grace
 
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cweinbl responded:
Hi Chris. Sorry to hear about your disunion. You have joined a large club. I had multilevel lumbar fusion (L3 to S1). It failed miserably. Now, because of it, I have a ton of fibrosis (scar tissue) and arthritis. I'm in even more pain, just like you. Yes, medication can help. But only so much. I too went to pain clinics (two) and tried everything. The only treatment that helped was biofeedback, which I still use and it can reduce my pain by up to 20%. BTW... surgeons never admit this, but spinal fusion has a success rate of about 60%. I learned this long after my fusion failed. That success rate (more like FAILURE rate) is one of the lowest of all types of surgery.

Some thoughts for you:

1. There are two last-resort options for those of us who cannot benefit from opioids. One is the spinal cord stimulator. The other is the intrathecal infusion pump. Both treatments have a trial unit worn outside the body to determine if it might help and by how much (of course that is complicated by the placebo effect. Also, both of these treatments require surgery to implant and to remove. Unfortunately, the success rate for patients with prior spine surgery is between 40% and 60%. Once more, it's a gamble with bad odds.

2. Here is the latest, greatest most comprehensive research on all types of spinal interventions: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf . You can see the success rate for each intervention.

3. There is another (older) type of spinal fusion in which there is no hardware implanted at all. Rather than relying on metallic instrumentation (with pins and screws that can break or come loose, creating a disunion), you can use your own bone tissue (or cadaver bone) to fuse the spine. Yes, the recovery takes a little longer. But at six months post-surgery, the grafted bone is as solid as any other bone in your body. The risk of disunion is virtually zero. My fusion did not fail in the sense that it did not come apart. Instead, I have bone on bone at L5-S1, massive fibrosis and the ravaging effects of decades of osteoarthritis in that region. You have the right to request a repeat fusion using a bone graft rather than metal instrumentation. It's your body, your health and your future. Research both types of surgery and make your own decision. While many young surgeons prefer to use metal implants for fusion, there are still veteran spine surgeons who perform the more traditional fusion with bone.

Finally, I learned that there is a type of surgeon who is light years ahead of everyone else. They are called spine surgeons, which means that they have completed a fellowship in spine surgery. That's three or four years AFTER a residency. Spine surgeons know the latest techniques. Their procedures are more advanced and effective than all other (orthopedic or neuro-) surgeons. Spine surgeons can be located at or near teaching hospitals. I plan on no further spine surgery. But if I did, I would only allow a fellowship-trained spine surgeon to operate on me.

Good luck Chris.

P.S. Please try biofeedback. If you can't, then try meditation, systematic relaxation or "soft" Yoga. Mind-body treatments really do help and in a way that's totally non-invasive and without adding chemicals to your bloodstream.
cweinbl
csw2@bex.net
 
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HighOct4ne replied to cweinbl's response:
Thank you all for your comments and feedback. i am most likely going to try the spinal stimulator. I have already completed the required psych eval, along with getting a second opinion from another surgeon. I was told that if i attempted a "re-fusion", even if it worked, my career (as a corrections officer) would most likely be over. Hopefully the spinal stimulator works, and i can get back to a (somewhat) normal life. I'll keep you all posted on what happens...Again, thanks for sharing your knowledge. Right now, I need all the info i can get.
 
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cweinbl replied to HighOct4ne's response:

Just be certain to use the TRIAL unit, worn outside the body for a few days, before you have the SCS surgically implanted. And be advised of the placebo effect. When we expect something to work, we BELIEVE it is working initially. I have experienced the placebo effect with virtually every treatment. A few weeks later, the pain is back where it was and the treatment had failed. The problem with the SCS is that you don't have a few weeks to shrug off the placebo effect. It's more like a few days. I wish that I had a better answer for you. But in a matter of a few days, placebo can overcome anything. Remember, the SCS must be surgically implanted and surgically removed. The risks are not great. But some patients have developed MRSA infection and there have been a few fatalities. Again, the odds are in your favor. I'm just providing the complete picture.

Also, this treatment, like opioids, has a tolerance effect. In other words, you might discover that over time you'll require ever-higher dosages of electricity. Eventfully, you may reach the maximum dosage and become tolerant. Then, there is no alternative.

Finally, if the SCS does not work well over time, you can still try the Intrathecal "IT" Pump. Like the SCS, there is a trial unit worn outside the body, with a catheter than drips an anesthetic fluid on your spinal nerve roots. Over time, the negatives include: tolerance to the medication in the reservoir, crimped or blocked catheters, catheters that move away from the spinal nerve root, resistance to or side effects from the medications and mechanical failure.
cweinbl
csw2@bex.net
 
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ctbeth replied to HighOct4ne's response:
Hi Chris,

Did you have a look a the St. Judes link I sent? There is a FAQ section that addresses many of the concerns about which you'v either posted, or spoke about with me privately.

I have also visited Medtronics site, as my ex- is an attorney for them, LOL! Small world, right?

My neuro-surgeron prefers St Judes- mostly, as he has told me, because their customer support is superior to other companies that he's encountered.

I do not know how other companies deal with patients, but I have had the best care from the representatives from St Judes. I have my rep's phone number and I can phone day or night if I need.

With St Judes, a trial is mandatory. I believe you've already stated that you will have a trial. I have been lead to believe that the psych evaluation and trial SCS are not optional; everyone must have the trail before implantation.

If your MD has told you which neuro-modulation company he/she prefers, or uses exclusively, you can go to their website, or speak with the company rep. and get accurate information regarding your specific concerns.

I absolutely love mine. It has made such a positive difference in my life and my desires to diminish the "sick role".

I do not like being treated or looked upon as disabled or unwell.

I'll be away this eve, but will look for you on chat tomorrow eve.

TTYT,

CTB
 
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ctbeth replied to ctbeth's response:
P.S. My MD has the trial for 1 week to 10 days. I was encouraged to try many different settings during this time to get as good a feel for the SCS temporary prior to implantation.

Also, I was on po antibiotics for a few days before, IV antibiotics intra-op, and in post-op ("recovery room"), and for po 10 days post-op.

Of course, MRSA is resistant to the antibiotics. I was given Cipro and experienced no problems.

Over the five years, I have had three battery changes and the entire unit changed. My initial unit was flawed and caused the battery's expiry within 10 months -to-one year.

Since I have had the second unit implanted, it has will be two years in January and my battery is still at over-60%.

I hope that SCS can help you mush as it has helped me.

I have gone from nearly housebound with pain to being able to work part-time and actually have a little social life.

I know that I have written a lot on this topic, but it has given me so much relief and hope that I am enthusiastic about the prospect of your getting adequate relief, as well.
 
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HighOct4ne replied to ctbeth's response:
I would like to thank you all very much for your responses, they have been very helpful in helping me decide what to do concerning the SCS...


After reading the posts, I think CTBeth is the most knowledgable on this particular subject. She is a registered nurse, has had multiple fusions, and also the only member (that replied) with a (permanant) spinal stimulator...I only hope my experience with the SCS turns out as well as hers. If I meet anyone else in the same situation I'm in, (as far as wondering about getting a fusion/SCS) I'll be sure to send them her way.

I have recently met with the orthopedic surgeon concerning the device, and have an appointment on Tuesday (11/13) to set up an appointment for the required "trial" unit. I am anxious yet optimistic to see how well the SCS works for me. I am hopeful it will offer me a chance at a more active life, and give me the ability to get back to some of the things i miss most.

I will keep you all posted on what happens...God Bless.
 
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anpow54 responded:
I am 37 year old female and have had 2 surgeries in the last 2 years. First surgery was a "cleaning up" of herniated disc L5-S1. Nine months later I fell and re-herniated the same disc. Then had fusion for L5-S1. My surgery was successful, but I want you to know that there's still a good chance you'd be on pain meds for a long time, maybe the rest of your life. I no longer have the pain associated with disc pressing on nerve, but it's more of a broken bone deep ache. I think it's best to ask why the fusion didn't work the first time... If it's due to your own body, then I wouldn't want to chance another surgery. If it's due to surgeon error, I would seriously consider it. I do not regret my surgery even though I'm still on pain meds. I take them and have a mostly normal life; before the surgery I took them just to keep from shooting myself! Good luck, and I hope whatever option you take works well for you.
 
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jaybird0930 responded:
I had the same problem you had. I was a healthy triathlete whose back went at about 55 years old. I had a vertebrae slide out due to degenerative disc. Tried everything they recommended before surgery. Nothing worked. So opted for surgery. Being a veteran I went to a VA Hospital. I signed the release with no mention on there of anyone else doing the surgery except the surgeon. Once I was in there they let a resident who needed one more surgery for his being a neurosurgeon. He botched the surgery with the surgeon on hand. I did not fuse. Only other option was a complete redo. Went to Boston VA where I went under for nine and a half hours. Surgery was a success and I fused. The bad news was they took bone off my hip for the fusion. Now I have constant hip pain and the low back pain has returned. Also they used BMP in the fusion. It helps speed fusion. Now that has been shown to cause cancer and nerve problems and excess bone growth. So have hired a lawyer as the VA knows nothing about it. If I had it to do all over again. First I would find someone who does the new type spine surgery through about a one inch incision. It is done as out patient and you go home the same day. Recovery is about a week. Not 4 or 5 months.
That is the only way I would have surgery on my back again ever. Find a doctor who is up on all the new procedures, stay away from BMP which is made by medtronics. Don't have anything to do with a doctor who uses any of their products. Don't let them talk you into anything. Get 2 or 3 opinions before you jump into a surgery. I am completely disabled because of this. My life as I knew it is gone. I lost my business and home and family. Be very careful and take your time as this is the only life you have. I hope this helps you. Good luck and god bless. Jay.
 
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mynameisrick responded:
I had 2 back surguries myself at L5S1. The first one was to remove 1/2 of the disc that had fragmented. That left me with the grinding where the disc used to be. My second was 2 bars and screws. This stabilized me but made the pain much worse. I went through several spinal injections and with the second to last one, My spinal cord may have been pierced. Several MRI's through out this pain with a final diagnosis of a disease called Arachnoiditis. This has progressed to more pain than ever. I looked into the implants and was talked out of them. With your situation of a broken screw, couldn't they repair the hardware and remove old scar tissue to get you stable?
 
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mikepenn responded:
Hello Chris
I can really relate to your situation. I started out in 1998 with my first neck surgery. Soon after I found out the top 2 screws in the plate did not stay in the bone and the plate fell forward compressing my throat. So it was back into surgery to fix it. A year later due to complications and scar tissue I was back into surgery. Then another, Then another, Then one that used a cadeiver bone. The bone disenegrated and it all collapsed. (I hope you get where I am going with this.) To fix this they redid the fusioon & inserted a PVC cage with BMP2. to fill the space. I continually allowed all these surgerys so I could keep working and stay away from pain meds.
So, where am I now? I am 58, have been on disability for 2 years, my neck is a total wreck, I am on pain meds & I recently found out the stuff they put in my neck was only approved for the lower spine & is causing major complicatioons.
So after 7 neck surgerys I am where I never wanted to go. I just found out my lower back has some major issues. So like you I am terified as to which way to go from here. But, I am really thinking surgery is not even a option. It just seems to worsten things in the long run. I already can't work, drive, or do a lot of things I enjoy so what would be the point.
 
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planeinspector101 responded:
Chirs, my name is Cliff I am 50 yrs young LOL I have had 4 failed back surgeries. I am now fuse L3-S1 since 1997 and still in severe chronic pain. from my nerves and scar tissue & disks. Pain meds dont help me, Just over A yr ago I tried the trial spine stimultor from St jude. my tech was ajerk and screwed it up, I was his last patient before he went on vacation. his back up would not give me the time of day. St jude did look into it after I filed a complaint and was told he was delt with, I waited a long time for the SCS do to its W/C. He did not program it right, now I have severe spasms. W/C ins will not authorize another do to pending lawsuit. I am on some meds now that help about 10%. I use to be an aircraft inspector, but can no longer work. I now have the beginings of drop foot. I wish you all the best in which road you travel. Please keep in touch if you like I can give you my email. good bless
Cliff


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