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pain management support group

For all of the chronic pain sufferers out there, whether it be from ... more

Need Advice Spinal Fusion with Multiple Discs

Hi all, I am new to the boards, but I desperately need some advice. A few years ago,...

Posted by Suzie_Q_76

Hi all,

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.View Thread

Posted bySuzie_Q_76

13 Replies | Reply | Watch This DiscussionReport This| Share this:Need Advice Spinal Fusion with Multiple Discs Hi all, I am new to the boards, but I desperately need some advice. A few years ago,...

Reply: Spinal Cord Stimulation Implant for Severe Chronic...

Hi Fighting! I know your surgery is tomorrow,and I've been thinking about you. I will...

Posted by Suzie_Q_76

6 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal Cord Stimulation Implant for Severe Chronic Shoulder Pain Hi Fighting! I know your surgery is tomorrow,and I've been thinking about you. I will...

Reply: Need Advice Spinal Fusion with Multiple Discs

Hi CW! I want to thank you for all of your great advice. Thanks to you, I've finally...

Posted by Suzie_Q_76

13 Replies | Reply | Watch This DiscussionReport This| Share this:Need Advice Spinal Fusion with Multiple Discs Hi CW! I want to thank you for all of your great advice. Thanks to you, I've finally...

Reply: Need Advice Spinal Fusion with Multiple Discs

Hi Grace! Sorry I didn't reply sooner. I'm somewhat of a ledite these days. How is the...

Posted by Suzie_Q_76

13 Replies | Reply | Watch This DiscussionReport This| Share this:Need Advice Spinal Fusion with Multiple Discs Hi Grace! Sorry I didn't reply sooner. I'm somewhat of a ledite these days. How is the...

Reply: Spinal Cord Stimulation Implant for Severe Chronic...

(Reply continued...) If you haven't decided on where to get the battery implanted, then...

Posted by Suzie_Q_76

6 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal Cord Stimulation Implant for Severe Chronic Shoulder Pain (Reply continued...) If you haven't decided on where to get the battery implanted, then...

Reply: Spinal Cord Stimulation Implant for Severe Chronic...

I'm sorry I haven't responded sooner. I'm so glad I could help, at least some. I went...

Posted by Suzie_Q_76

I'm sorry I haven't responded sooner. I'm so glad I could help, at least some. I went into it with little information about it. As it turns out, it worked well for me. You're smart to get as much information as you can.

Other limitations, off the top of my head, are walking through security scanners at shopping malls, Wal-Mart, Target, etc. It can cause the stimulator to surge suddenly. I was in Target last March and I was severely shocked. I had to go to the ER to make sure it was still in the right place. Luckily, it was okay, but it took several days to recover. You won't be able to go through an airport scanner at all. They will issue you a card that says why and TSA will have to pat you down, unfortunately. I carry mine in my wallet in front of my driver's license. That way, if I am ever unconscious, they know about it. They will tell you to turn off the machine with your remote control before walking through the scanner, then turn it back on. I will say that the times I have forgotten to turn it off, I didn't receive a surge. They'll recommend driving with it off, which can become obnoxious. It's a surge issue, as well. I don't turn mine off when driving and I've never had a problem.
No worries about all of the questions. I'm glad I can answer them. I wish someone would have told me before I had mine, but I was so miserable, I just wanted to get rid of all the pain J . If I miss anything, please let me know.

I didn't have any complications with either of my surgeries. I was concerned about CSF leakage, as well. I didn't have a risk of pneumothorax, because placement for me was lower lumbar.

I will say the trial is very miserable. The external leads are covered by thick bandages and thick tape. It was hot, you can't get it wet, etc. The surgical pain is difficult as well. It will depend, though, on what medications they give you. I needed an adjustment at that time, so I can't blame the surgeon or the implant. Also, you have to keep your back as straight as possible. If you sleep on your stomach or back, it will be tough. I had to sleep on my side, and still do. That took a big adjustment. The leads are carefully taped down, so you probably won't have any issues with it. I didn't.
The permanent implant surgery was a lot better. The worst part was keeping my back straight for 6 weeks. No twisting, bending, lifting, it can be very frustrating. What got me through was knowing I was going to have some normalcy back.

It took me about 3-4 months to fully adjust to the implant. I kept forgetting to charge the battery, which I still forget sometimes. My vision and tastebud changes were temporary, thank goodness. That took 3 different adjustments by Boston Scientific. Once we got the stimulator adjusted properly, everything returned to normal. Food didn't taste right, or it had no taste. Vision was harder to deal with, until it returned to normal. I felt like everything was moving, like being on a shaky roller coaster. And, for the first few months, if I didn't have the setting on the remote right, it would do that. I haven't had a problem with it in over a year, though. Eventually, it all settled, and it really only took a few months, if that.
I have heard from a lot of other patients who had a stimulator that after a year or two, they had it removed. It either didn't work, or they just hated it. I have not reached the point where I hate it. In fact, I'm fighting a surgeon who wants to remove it. I'm keeping it, though. For me, it's been worth it.

The doctors that I've dealt with insist on using an MRI, and some have refused to treat me unless I have the stimulator removed. It really depends on the physician. I have found that doctors rely on MRI for just about everything, especially soft tissue damage. If it's not an option, they get very frustrated. On the other side, some doctors found the challenge interesting. (Ran out of room. More to come)View Thread

Posted bySuzie_Q_76

6 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal Cord Stimulation Implant for Severe Chronic Shoulder Pain I'm sorry I haven't responded sooner. I'm so glad I could help, at least some. I went...

Reply: Need Advice Spinal Fusion with Multiple Discs

Thank you for the information. It has been very helpful. I won't be going with the...

Posted by Suzie_Q_76

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.View Thread

Posted bySuzie_Q_76

13 Replies | Reply | Watch This DiscussionReport This| Share this:Need Advice Spinal Fusion with Multiple Discs Thank you for the information. It has been very helpful. I won't be going with the...

Reply: Need Advice Spinal Fusion with Multiple Discs

Currently, the doctor is looking to fuse the L4-L5. My L5-S1 is the other disc with the...

Posted by Suzie_Q_76

13 Replies | Reply | Watch This DiscussionReport This| Share this:Need Advice Spinal Fusion with Multiple Discs Currently, the doctor is looking to fuse the L4-L5. My L5-S1 is the other disc with the...

Reply: Spinal Cord Stimulation Implant for Severe Chronic...

Hi Fighting, I am so sorry about your struggles. I know how frustrating it can be, and...

Posted by Suzie_Q_76

Hi Fighting,

I am so sorry about your struggles. I know how frustrating it can be, and I am so proud of you for not giving up. I suffer from nerve damage to my back/leg and I have the Boston Scientific stimulator. I also have neck problems and nerve pain associated with it that shoots through my shoulder and into my arm. So, my views are limited, but I can offer at least something. I am 35 and I've had my stimulator for a 18 months.

Getting the stimulator was one of the best things I ever did; however, I have a love/hate relationship with it. There are things the material will not tell you, and the doctors will tell you it's impossible. Other people I've spoken to, that also have the stimulator have had the same experiences, though. So, I know I'm not crazy:)

My pain levels went from a 10 to a 5 after I received the implant. I still have the nerve pain, but it is livable. It does help my arm if I turn it up high enough, but if you turn it up too high, it puts a severe strain on your body. I wasn't able to walk or get out of bed before. Without my implant, I wouldn't have a life. Lightning storms will sometimes cause a jolt through your body and I can always tell when they're near. If you forget to charge it, once a week for a few hours, it takes twice as long to feel the relief again. So, if it's been off for 12 hours, it'll be 24 before you start feeling better again. Your tastebuds will change. Your vision will change slightly, but over time it evens out and you won't notice it. Most of the people I've spoken to had to have it removed after 1-2 years because it no longer provided relief.

There are a lot of medical limitations with the stimulator. MRIs are out, and doctors can be really mean about the limitation. I needed an MRI and when I couldn't have one, the doctors (3 of them) refused to run any other type of tests and refused to treat me unless I had my stimulator removed. I just want you to be prepared for that.

What I did to figure out if it was helpful or not was to go off my pain meds during the trial period. The doctor and the Boston Scientific people will tell you not to do that, but it was the only way for me to learn if it was going to help me. When it worked, I went ahead with the permanent stimulator. If you haven't had a psychological exam yet, your doctor should refer you. Most insurance companies require it. They want to make sure that you are mentally prepared for the limitations.

I hope this helps you some. My family and I agree that it is the best thing I ever did, after many failed procedures. It does come with its own negatives, but that happens with everything.View Thread

Posted bySuzie_Q_76

6 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal Cord Stimulation Implant for Severe Chronic Shoulder Pain Hi Fighting, I am so sorry about your struggles. I know how frustrating it can be, and...

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