I am new to the boards, but I desperately need some advice. A few years ago, doctors discovered that I have a major issue with one of my discs. There's a bulge, a tear, and there is no fluid left in it. We've tried everything, and doctors have finally said that without a fusion, I will not improve. Doctors didn't want to do it initially, because of my age. I'm 35. They said when I'm 50, I can have it. They've changed their minds.
The problem is that I do not have just the one disc out. The disc above and below it are having issues, too. One has a tear, and the other is bulging. My fear of this surgery is that after a year or two, I'll need the other discs fused. It's another reason why doctors have said they don't want to do it until I'm older. I'm at a crossroads.
I need to decide if I will have the worst disc fused. I would like to hear the experience of someone who had multiple disc problems, but only had the worst disc fused. If you had it fused, did you have to subsequently have other discs fused? Was the fusion successful? Did you have to have the other discs fused? If so, how long after the first fusion did you have the others? How much limitation to your life is there? Also, if you had a failed fusion, can you share your experience with me?
My fear is that the fusion will fail and I will end up in worse shape than I am now. I do understand that is a possibility regardless. I just so happen to be that person...if the doctors say something has an 89% success rate, I'm the 11% that fails.
Initially, the surgeon ignored my other 2 discs. I also have a compressed nerve. He was rude to me, and kind of a jerk, to be honest. He thought I made up the nerve pain. He thought I was overreacting and being overdramatic, that my pain and limitations were in my head. After I allowed him to run further tests, he realized his mistake. He saw the compressed nerve, and told me during a follow up that it was really bad. He also saw the additional damage to my discs. I only let him run them, because whether it was him or another doctor, I needed them done. When I ask him what the risks are, his answer was "Well, it's better than what you have now."
I have children and a job. I'm unable to keep up with my life. I'm a slave to my pills, and I hate it more than anything. If the fusion will give me my life back, then I will be on the table tomorrow. Before I make this decision, I need more information.
First, you don't "fuse a disc." You fuse the vertebra surrounding the disc.
Second, you did not mention where the problem is. Are you describing lumbar discs? Cervical discs? This can make a huge difference in that cervical discs can be replaced with a new artificial disc. But there are no artificial discs today that can sustain the weight of your lumbar spine. So where are these bad discs?
Third, you can have spinal fusion AT ANY AGE. I had multilevel lumbar fusion (L3 to S1) at age 38. In fact, that was my fourth spine surgery. There is no age requirement.
Fourth, how many opinions have you had? No one, but no one, should walk into any type of surgery (let alone spinal fusion) without obtaining at least two ADDITIONAL opinions, after the first one. So, how many other opinions have you had? Did they all agree on a surgical intervention?
Fifth, are you seeing spine surgeons? A spine surgeon is an orthopedic surgeon or a neurosurgeon who has completed a following in spine surgery (about 3 years of training AFTER a residency). No physician comes close in talent and experience to a spine surgeon. They know and use the very latest breakthroughs in technology and procedures. I would not allow an orthopedic surgeon or a neurosurgeon to ouch me unless she or he has a fellowship in spine surgery. These specialists can often be found at or near teaching hospitals. Why trust your health to someone with less training and experience?
Sixth, how many comprehensive pain management programs have you attended? A comprehensive pain management program, or pain clinic will offer dozens of treatment options, most of which are non-invasive or minimally invasive. A person with your conditions can try:
spinal decompression, a corset, brace, TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, rhyzotomy (radio frequency denervation), spinal cord stimulator, intrathecal infusion pump, off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds, counseling, hypnosis and meditation. How many of these have you tried?
I've been through it all. My first disc herniation was at age 17, when my L5-S1 disc literally exploded in a football game. Since then, I've herniated two more discs, with more on the way. I've had four failed spine surgeries, including multilevel fusion and I've been through two comprehensive pain management programs. I've tried virtually every combination of medications and treatments.
Before you take another step, get referred to two spine surgeons for opinions. If they both recommend fusion, then you'll know that it is the best option. Good luck.
Currently, the doctor is looking to fuse the L4-L5. My L5-S1 is the other disc with the annular tear. My L3-L4 is the other disc, I believe. We are not worrying about my cervical discs until we get my lumbar discs managed better. I am aware that the disc itself is not fused. I know the procedure front to back. It is not the procedure that I am concerned about. It's really what I can expect after.
My medical problems are extensive due to failed therapies. The medical professionals that I have seen for my spine range from physical therapists to orthopaedic surgeons to neurosurgeons. When I said that we have tried everything, I wasn't exaggerating. I've done all on your list except hypnosis, which I won't do.
I saw on your profile that you have similar problems to mine, though you have much more than I do. I am unable to sit for longer than 20 minutes at a time. I walk with a cane most of the the time. I cannot lift anything, etc.
When your surgeries failed, did your pain worsen? What is your range of motion? When you had your multi-level fusion, was that after a single fusion failed?
I suppose using the word "advice" wasn't quite the right word. I want to know what to expect if I proceed with the fusion and it fails.
Yes, my pain increased after each failed surgery. Everyone grows fibrosis (scar tissue) at his or her own rate. I seem to grow it like it's going out of style. My last myelogram resembled a roadmap of New Jersey, with scarring everywhere. The more invasive the surgery, the more scarring you will have. Scar tissue can and does adhere to spinal nerve roots, creating just as much pain as a herniated or bulging disc, osteophytes or stenosis from a vertebral body. There are different ways to fuse a spine. Many people who have the metal hardware screwed onto their vertebra later complain about it impinging nearby tissue and creating as much pain as the patient had pre-surgery, or about it feeling "cold" in winter. I'm glad that mine is bone, harvested from my own hip, which can never be rejected. So what if the recovery is longer? It's going to hurt like hell either way. As I mentioned before, I would not be wheeled into any operating room without first obtaining opinions from TWO SPINE SURGEONS. If they don't have a fellowship in spine surgery, I don't want them to touch me. A spine surgeon understands the very latest and greatest surgical techniques, implant materials, operating aspect perspectives and procedures — all collected AFTER a residency. I was amazed with the latest, greatest techniques that my spine surgeons had, over my neurosurgeon and over an orthopedic surgeon. Your health is simply too important to trust to anyone with less training, talent and experience. Never fear doing this "around your current surgeon," to avoid hurting her or his feelings. Do you really want to risk paralysis or a lifetime of agony and incapacity, just to avoid insulting a surgeon's huge ego? I went to a fellowship-trained surgeon in An Arbor (University of Michigan) and the one in Cleveland. When both of them agreed that I needed surgery, I was satisfied. Spine surgery carries the worst odds for success of all major surgeries. I've had Lasik surgery twice (success rate 95%). My wife is having knee replacement in a few weeks (success rate 98%). Spine surgery today has a success rate of about 65%. Don't take my word for it. Here is the latest, most comprehensive research on all major spinal interventions: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf . The truth can be hard to take. Which long and short-acting opioid combinations have you tried? What about off-label drugs. Have you used biofeedback? Fentanyl Transdermal added 9 wonderful years to my career. At first, it eliminated 80% of my pain. Of course, after a number of years, we become tolerant. Later, I learned to combine a short-acting opioid for breakthrough pain (Oxycodone 10/325). Later, I added an anti-depressant (Trazadone) and an anti-convulsant (Lyrica). Only when I combined all of these together at the same time did I feel that I had successfully managed my pain. Remove any of them and the pain management collapses. Some people might believe that this is too much medication. For me, it's perfect. Have you experimented with all long and short-acting pain medications, plus off-label drugs? If not, now is the time to start (before you have fusion). Please let me know if you have any other questions.
Thank you for the information. It has been very helpful.
I won't be going with the current surgeon, if I do have the fusion. Now, it turns out, surgery is a minimum of 6 months away for me. I've had some pretty serious complications from "normal" treatments that have damaged my heart and stomach.
When this began, a doctor sent me to a chiro, who put me in decompression. They said it had 89% success. I ended up in the 11%, and I got a lot worse. I have a pretty severely compressed nerve, which is helped with the stimulator. Steroid injections damaged my heart and stomach. I went into anaphylaxis with the oral. I cannot take most medications now. The pain management doctor I've been seeing finally changed my medications and so far, I am managed better. I went from a pain level of 6 all the time, and I'm functioning at a 2 now.
Fentanyl helped with my nerve pain, before I had the stimulator, but it did nothing for my disc pain. It was the worst 6 months of my life. It also, ironically, affected my ability to eat. Normally, it makes eating better. But, combined with my numerous ulcers, I couldn't eat at all. I lost 40 pounds in 2 months. I tried Lyrica, but it didn't do much for me. Neurontin made me hallucinate, and I couldn't speak without tremendous difficulty. I tried Cymbalta, which helped. Unfortunately, the side effects made life unlivable. (I have a list of 20 medications that I keep on a notepad. I've learned to keep good notes of medication name both generic and brand name) Previous doctors over-prescribed ibuprofen based medications, and my gastroenterologist has diagnosed me with ibuprofen induced ulcers.
As I said, though, my new pain medications help a lot. I actually got to clean my house today for the first time in a year, without any help. I consider it a huge victory.
Thank you again for all of the information, and input. I will look into biofeedback further. With a 35% failure rate, and my ability to always be in the failed category, I'm going to avoid surgery as long as I can stay managed without it.
Hi cweinbl, Wow,you certainly have been through alot of surgery and have alot of knowledge,I think its great that you care and share!! I have had 2 major neck surgeries and I have alot of scar tissue too!I know the 2nd surgery,part of it was to clean up some of that!What a mess,the first surgery was much more invasive but I had to stay in the Hospital 2 weeks after the 2nd one!I guess it was something to do with spinal fluid? I I did not know that the scar tissue causes that much pain and is that damageing! Have a great weekend 77grace
Fibrosis (scarring) is a major culprit in spine surgery's low long-term (post 12-month) success rate. It adheres to anything and everything, including spinal nerve roots exposed by the lack of protective lamina and bone. People grow it at their own rate. Mine grew like it was going out of style. My last myelogram resembled a road map of New Jersey, with fibrosis everywhere. My bad luck.
It's smart to avoid surgery as long as possible, assuming you don't have significant instability. But you might not be able to do that forever. It's a shame when patients like us cannot benefit from pain medication, anti-depressants and anti-convulsants. I'm lucky that it still helps a little, although tolerance is unavoidable. When all else fails, there is the SCS and IT pump. Good luck to both of you.
Thanks for your reply!What is SCS?? I'm sort of familar with the pain pump,but I realy don't understand how it would work better than the Methadone I am currently taking?Also muscel relaxers and such!Do you like one mucsel relaxer better than others/ also why?? I am taking Zanaflex for that and valium for muscel spasm and stress! I am waiting for my husband to get home and help me put on my new Tens unit and see how that works! Have a great one.77grace
The Intathecal infusion pump is for patients unable to obtain significant relief from pain management treatments and medications. It uses a much smaller dosage of common pain medication, with one exception. Prialt is a powerful pain medication derived from the venom of snails found only in the South Pacific. Prialt is only available for IT pump delivery.
I do not use muscle relaxers, as my pain is primarily neuropathic. While I also have nociceptive pain from fibrosis, bone damage and osteoarthritis, those conditions do not produce muscular pain. Therefore, I'm not a candidate for muscle relaxers. I used Soma 40 years ago, when I had muscular contractions secondary to central canal stenosis. Today, there are newer and better muscle relaxers, with more manageable side effects.
Sorry I didn't reply sooner. I'm somewhat of a ledite these days. How is the TENS working?
I have an SCS and though it works well, I know it will fail soon. The scar tissue around my implant is excruciating, especially in the cold. Though my battery pack is the worst part of having it. Talk about uncomfortable! But, no major complaints.
When I took muscle relaxers regularly, I took Valium as well. The anxiety relief was a happy side effect. Eventually, though, I didn't need the assistance with the anxiety, so I switched to Robaxin. I LOVE it. It doesn't make me loopy or sleepy like Flexeril, Zanaflex, and the others do. I really liked Soma, but since the FDA changed the classification, doctors won't prescribe it anymore.
I'm starting to have some neck problems now, which I understand can be pretty normal. Did you get an artificial disc? If you don't mind my asking, what surgery did they do and did it give you any relief or make it worse?
I want to thank you for all of your great advice. Thanks to you, I've finally found the information I needed to make my surgery decision. With that failure rate and the problem of multiple discs out, I'm not going to have surgery. When my kids are older, I'll revisit the issue.
So far,I'm functioning well on my new medications. I actually went back to work, which is a huge step forward for me.
I hope you're doing better. I know it's a one day at a time,and I hope you have more better days than bad. Thank you again!
Suzie, it's always better to make an informed decision. Consider that ten years ago, disc replacement surgery was brand new. Today, it's standard. But today, it's still not available for lumbar surgery. Perhaps it will be soon. People almost always do the same thing. They wait until they can't tolerate the pain a moment longer, then they have surgery. The other downside (even when the surgery is perfect) is fibrosis (scar tissue). We each grow it at a unique rate. If you are like me, you'll grow it like it's going out of style. Scarring can impinge a spinal nerve root just like osteophytes or a piece of extruded disc. And while it technically can be removed, it's considered unethical, since at least as much will grow back. After surgery, you can grow osteophytes (bone spurs) which can cause just as much pain. That requires more surgery to remove. And if you have 3 or 4 surgeries, as I have, the next one will be fusion, because so much bone has been removed that the spine is unstable.
For what it's worth, I think you're making the right decision. Buy yourself some time. Then, when you can't stand it a moment longer, when you can't work, sit, stand or sleep, you'll benefit from the latest techniques.
My only final recommendation would be to have no one but spine surgeons operate. In other words, if she or he has not completed a fellowship in spine surgery, don't let them touch you. There are many good neurosurgeons around. There are some terrific orthopedic surgeons. But they all pale in comparison to one of their colleagues who have been through a fellowship in spine surgery. Find them at your nearest teaching hospital. Would you want to risk your health to anyone but the best? Of course not. Good luck!
You mentioned Prialt in this response. That is the first medication I had when my pain pump was implanted in 2007. I gave it 3 months and I was so miserable. My legs swelled up and were teribbly painful and I went on HCTZ which helped with the swelling, but not the pain. My thought processes were all mixed up and I still had my intercostal pain and got off of it. Another patient with this dr. had the same results, and the dr. isn't using it anymore. I have Morphine and Bupivicaine in the pump and am experiencing pain at the pump site. My only choices left in the pump are Clonidine and Prialt. I tried Clonidine twice and both times had terrible side effects. I don't want to try prialt again. The pump pain seems to be due to at T9/T10 there is a right paracentral disc protrusion which indents the thecal sac and encroaches upon the right neural foramen. I had a disco gram and am waiting on the results as to wear the leak is. I would like to hear from people who are on prialt.
There are still some options. Here is a link for the most comprehensive research I've seen covering all major forms of spinal interventions http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf . The SCS and IT pump are really last-resort options for chronic pain patients who cannot benefit from medications or non-invasive treatments.
Have you tried biofeedback, systematic relaxation, meditation or Yoga? Mind-body treatments are unlikely to remove most of your pain. But they can help a great deal temporarily. I can drop my pain by up to 20% with biofeedback alone. When people say, "pain is in the mind," they are mostly correct. It is possible to train the mind to temporarily push some pain aside. The same applies to distraction therapy. When I'm wrapped up in a good book, or when I'm focused on my writing, research or editing, my mind is pushing aside some of the pain as it focuses on something else. The cost to use this (after learning how) is nothing. There are no side effects. Just less pain.
I have also tried acupuncture, TENS, corset, brace, PT, exercises, swimming, injections and a host of other options. What I've learned is that the road to success lies in multiple options used together. That means a long-acting pain medication plus a short acting medication (for breakthrough pain). It means using an off-label drug (anti-convulsant) plus an anti-depressant (to inhibit the reuptake of Seratonin). It means using biofeedback plus systematic relaxation. All of these treatments, used together, make my life more tolerable. I still can't sit or stand for long periods of time. But without the combination of treatments, daily life would be intolerable.
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