I wanted to ask for any advice on failed fusion. I have a long history of back pain, starting back in 1998. I had my first fusion in 2002, fusing L4-L5-S1. Long story,but I had lost all the fluid in the discs and had bone-on-bone.
After surgery, I had pain just as bad as I did before. However, being younger, I lived with it for a while, as long as I could stand it, and then had to start the physical therapy, injections, etc...again with a new doctor as we had moved to a different state. I had spinal instability at L3-L4 and it was very severe, so we had to fuse that in 2008. They did an XLIF procedure because they didn't want to overstress my spine and they thought it would be the best approach. Well, after surgery, I was still having lots of pain. Turns out that my hardware from the first fusion needed to come out. So we took that out in March 2009.
Here's the weird part. I had to wait one year for the fusion at L3-L4 to take as it wasn't showing it was fused after 9 months....supposedly, it was only supposed to take 6 months. So we waited, and the doctors assured me that my L3-4 was fused and the hardware removal at L4-L5-S1 could proceed. This is at a different clinic than who did the surgery as we had moved to a different state again...yes, three surgeries all in different states
Well, we removed the hardware at L4-L5-S1, and I'm in worse pain than before the surgery! Turns out the screws at the S1 level were hitting the nerves for 7 years causing significant nerve damage. Well, the clinic I was at wanted to immediately implant an SCS for the nerve pain as they said it would be permanent. I however wanted a second opinion from a neuro. and found one. He's very conservative and we did the same usually process...X-rays, MRI, CT Scan, and then he tells me that my L3-L4 isn't fused and that it's too been too long for it to fuse. So I say WHAT???
I can't believe that the other clinic went ahead with the hardware removal surgery when the other level wasn't set...or maybe I can believe it as I now feel that they were all about how many procedures can they do on you...I even had to pay for paperwork to be completed...can you believe that??
Anyway, I wanted to see if any of you have a failed fusion and if so, what did your doctor recommend to do? I have thought about magnetic pulsing therapy and ask the neuro. but he said that it's too long out and it wouldn't generate bone now. I'm on a super-duper calcium supplement, but I have issues with calcium absorption as I have small intestine damage...which may be one of the reasons why my fusion failed.
Sorry for the long post and I look forward to hearing some of your suggestions and situations.
My fusion failed as well and I also recieved a you are all fused from my original surgeon and several , you aren't fused at alls' at the others I consulted for second, third and fourth opinions as to why I was in worse shape than I was before the surgery.
I had to have it revised and the neuro used bmp to try to make sure that it did in fact fuse.
As to why that other group removed the hardware without making sure that the bone graft had taken, is beyond any common sense.
The surgeon or group who told you that it far past the time when stim or any of that stuff would help progress the fusion area, take them at their word. What does he suggest that you do at this point?
Best of luck,
Thank you for your suggestions and sharing your experiences with me. First of all, I am so sorry for your issues.
What do you mean when you say "the neuro used bmp to try to make sure that it did in fact fuse"? They opened you up and put bmp around the bone/cage? My doctor used bmp and that is why I'm so confused at I thought it would harden no matter what...
After the bmp, did it fuse? Are you better now? What is going on with you?
I have an appointment with another doctor Monday. He is an expert in Spine Issues but he is at the clinic which did the hardware removal. I am taking him my CT scan to see what his opinion is. The other doctors who said that the fusion was good were only looking at X-rays so it may be that it was hard to see the detail when they said it was fused.
The neuro who told me it was past time for fusion said that I needed to take a calcium supplement, which I'm doing, and to be careful to not overdo things for the next year. He said after a year, we would redo the CT Scan to see if things have hardened up. That's why I was trying to find other ways to help the healing, like possibly magnetic pulsing therapy or [I]"sleeping facing the north direction"[/I] ...whatever I can do to help it along, you know?
I am also in the process of "waiting" for nerves to heal over the next year, as I had screws hitting S1 nerves almost 7 years. The doctor I am going to on Monday is super anxious to stick in an SCS, but I really want to wait for a year to see if the nerves will heal on it's own. No doctor I've seen seems to believe it will happen, but I believe anything is possible. I really, really don't want to have to do an SCS, but it may come to that and as long as I have exhausted all other options, then I feel I can move towards that.
Thank you again for sharing and I look forward to hearing about your issues.
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i would think twice about getting a spinal cord stimulator its another surgery. i hear the leads migrate and break which requires surgery. There is also the risk of infection. and the batter pack can do the same. the trial is around seven thousaand and the surgery close to 60 thousand insurance pays but still. it sounds profitable and the compaines who make the devices bid for it.
Have you considered Prolotherapy? You could research it. It is done by MD's but it is not surgery. It actually enabled me to completely avoid surgery and I'm doing well now. I highly recommend, especially if you're "on the fence" about having surgery.
[QUOTE=vlaud;4314907]i would think twice about getting a spinal cord stimulator its another surgery. i hear the leads migrate and break which requires surgery. There is also the risk of infection. and the batter pack can do the same. the trial is around seven thousaand and the surgery close to 60 thousand insurance pays but still. it sounds profitable and the compaines who make the devices bid for it.[/QUOTE]
Before simply skipping the Neurostimulator as a viable option for your pain management, I would undergo the trial and see if in fact you find the stimulator beneficial. I have had a Spinal Neurostimulator after 3 different fusion and a laminectomy procedures (the Laminectomy procedure was the first surgery, I just want to clarify that).
Do the Stimulator leads migrate? Yes. However, I found that the best possible approach for my situation was to have two leads installed. I did a tremendous amount of personal research on the various stimulators available and their strengths and weaknesses. Finally, I ended up at odds with the surgeon who was to do the stimulator implant and when he refused to use the stimulator brand which I felt was best for me, I found a surgeon who worked with the specific brand I wanted implanted.
I chose the Boston Scientific Spinal Neurostimulator for several reasons. [B][U]Please keep in mind that my selection was based upon the equipment available when I had my stimulator implanted and although it has only been about 30 months ago, the technology and features of these units is constantly being upgraded.[/U][/B] So, based upon the time I was to have a Stimulator implanted, the Boston Scientific 2 lead unit with each lead having 7 different programmable levels on EACH LEAD provided me with the best possible coverage opportunities and also allowed reprogramming of the leads should they migrate, which they did. I also preferred the specific battery used by Boston Scientific and the recharge methods were more flexable with the Boston Scientific unit than the others I considered. The Boston Scientific unit uses a battery which does not develop a "memory" and draining the battery completely before recharging it does not damage or impair the battery in any way.
[B][I]My spinal neurostimulator has been a tremendous device for pain management.[/I][/B] Yes, it took some getting used to. Yes, I had to have the programing adjusted a handful of times (maybe 3 or 4 in 2.5 years). Yes, the leads migrated slightly and with the flexability of the style of leads I had implanted, no surgery or any procedure is required to change the leads generating position and strength. Simply attach a patch which looks like the EKG leads which are used over the stimulator location and the technicians can make the changes necessary. Would I do it again now knowing what I know? Yes.
It is extremely important to realize that until the leads "scar in" to your body, the sensations generated by the stimulator will in fact move around in your body to some degree. The stimulator will often produce different sensations and even intensity strenghts based upon your physical position at the time of programming. Therefore, it is important to try different positions (lying flat, lying on your side, sitting in a chair, standing, etc.) while the technician is programming the unit. With the two lead option as well as the multiple programming levels available on each lead, you have numerous options of how the signal is delivered.
One of the things which I found particularly annoying is the fact that the stimulator unit itself is commonly surgically implanted in your upper butt, lower back area, which makes attaching the charging belt or stick on patches tricky for you to do alone until you get used to it. I am told the reason why the units are not implanted in the front abdomen is because during the implanting of the unit, to install the stimulator in the front of the patient would require the surgeons to "break scrub" and have to flip the patient over and clean and sanitize the frontal implant area. Well, I can only say that the inconvienence which the surgeon would incur seems minimal to the permanent challenges the patient must deal with in charging a device which is behind you.
I figured out the best way to do this was to lie on my stomach and have my wife mark the exact location of the stimulator unit with a permanent black marker. That way, I could stand in front of the mirror and see exactly where I needed to apply the battery charging unit and it allowed me to charge the unit without any assistance. It is important that the charging unit be as centered over the stimulator as possible to make the charging of the battery as effecient and quickly as possible. Even having the charging unit off center by 25% would sometimes almost double the time requirement to completely recharge the units batteries.
By also having the unit in your backside, you can not apply the charging unit and "sleep or lie" on it as the battery charging unit shuts off automatically when the unit overheats or reaches a specific temperature. On more than one occasion, I would fall asleep lying on the charging unit only to find that it shut itself off soon after I applied it so even though I had worn the charging unit all night, the battery was not charged and still required me to reapply the charging unit.
You can charge the unit while moving around the house, setting there reading the paper, etc. as long as the charging unit stays centered on the stimulator. Boston Scientific provides these double sided tape devices which allow you to stick the charging battery on the skin and for the most part, it will stay where you put it. Depending upon what I am doing when I charge the unit, I usually will use either just the belt unit or just the double sided tape to hold the charging unit in place. Again, having the area marked makes aligning the charger easier when doing it alone. Oh, and don't worry, the permanent marker usually wears off or washes off in a few days so in my case, using the permanent marker has not been a permanent ink spot on my back!
Sadly, it seems as though the years of taking narcotics for my chronic pain has severely affected my hearing, especially in my left ear. The stimulator beeps when the charging unit is not charging to inform you to address the problem. Often, I can not hear the beeping and my wife will finally have to inform me that I am "beeping" so I can fix whatever the problem is. The good which has come from this is it confirmed to my wife that in fact my hearing is impaired, not that I had been ignoring her as she thought. Of course I am kidding, well at least in part.
I just underwent a second stimulator trial for severe chronic pain in my shoulder. Three surgeries and the pain is worse each time so if in fact the problem can't be surgically repaired, I may as well at least attempt to "cover up" the pain, which is precisely what the stimulator are for. My doctor had to place the temporary trial leads 5 times, as everytime I got off the procedure table, the leads would have migrated so far that the unit could not be programmed to address the specific pain area. Finally, after extensive stitching of the lead and it's cover to my back, the lead stayed in place for the first 5 days of the trial. By time I had the lead removed, the doctor specifically said that he wanted the live xray image taken before removing the lead to see where it had ended up and sure enough, it has moved again, down out of the correct area by about 3".
I am still not certain if I am going to proceed with the implanting of this second stimulator as the surgeon informed me I would have to wear a neck brace for 8 weeks and would be unable to turn my head or move up and down during this period, which I find too restrictive and unacceptable.
In closing, I would have to say I am a HUGE FAN of the spinal neurostimulator and it has been extremely beneficial in my quest for pain control. Yes, it was extremely expensive, with Blue Cross paying almost $80,000.00 between the surgeon, facility and with the majority of the cost being for the device itself. My personal opinion is that if you are unable to manage your pain in the other acceptable methods, consider the stimulator and give the unit a try in the trial program. At least then you will know if the unit can help you. Best Wishes.
[QUOTE=jenj770;4315020]Have you considered Prolotherapy? You could research it. It is done by MD's but it is not surgery. It actually enabled me to completely avoid surgery and I'm doing well now. I highly recommend, especially if you're "on the fence" about having surgery.
I'm glad to know that it worked for u. I have one question is that I suffer a lot with pain. During Pt I used a tens unit or tried but it caused me extreme pain when it touched the skin i have allodania from the nerve damage caused by CRP.so my question to u was did u have any pain relife with a tens electrical stim?
[QUOTE=vlaud;4315750]I'm glad to know that it worked for u. I have one question is that I suffer a lot with pain. During Pt I used a tens unit or tried but it caused me extreme pain when it touched the skin i have allodania from the nerve damage caused by CRP.so my question to u was did u have any pain relife with a tens electrical stim?[/QUOTE]
Personally I found no relief from the Tens Unit and actually I found it quite annoying. The "sensation" you get in pain relief from the Implanted Neurostimulator is difficult to describe as it is really not like anything else I have experienced. In my opinion, the stimulator sensation is wholly unlike the sensation I felt when the Tens Unit was used. I did not like the Tens Unit sensation.
The level of narcotics I was on prior to the stimulator implant is almost unbelievable. When I would indicate the meds I was on like on a new patient form, the doctors or nurses would always argue with me and tell me I must be confused as there is no way one person would need that level of meds. Well, it was 100% true.
After the stimulator, meds cut down 75% within the 1st year. I did investigate having an internal pain pump implanted but the conversion of the meds I needed to the pump volume meant that I would have had to fill the pump multiple times per month, which was not practical and no local Pain Docs would do it as they actually lose money each time they fill the pumps because their Insurance Reimbursements had been reduced resulting in the cost to fill the pump exceeding the amount they would be paid to fill it.
For me, the stimulator sensation is dramatically better then the pain I experience without the stimulator. This is one of the reasons why I suggest the stimulator trial. I am not familiar with Allodania so I really cant comment on that topic. Best Wishes......
Thanks for your quick reply and i also know what its like to list the med's I'm on and get this surprised look. The pharmacy's make u feel like a drug addict, and believe me I.'m not on enough for good pain control. I'm still in pain but refuse to go up on my dose. We are looking into other things. I just really wanted to stay away from anything that had to do with opening my back.I had a botched surgery and was traumatized. if you read my other post you will see how i describe my life. So I'm really scared. but i will mull this around in my head some more. Thank you for your time
[QUOTE=mommamurph;4316164]I am sorry I have no advice, but I will pray for you It is difficult to deal with unrelenting pain on top of Dr's that are not telling you everything. Keep your head up, you are not alone.[/QUOTE]
I know I'm not alone but am sorry for what everyone on this board is going through . The main thing is we dont give up faith and hope.