Fusion Surgery Advice Needed from the Experienced - how long to wait?

caszyman

After 18 months of non-surgical methods and two other opinions in Feb. '05 we decided with my daughter's dr that it was time for her to have a fusion. We chose to book surgery in June when she finished school. That was our choice to wait a few months. The dr felt that we were safe to do that. cas

lfoster21

Ive scheduled 2 fusions. The 1st took about 4 wks. and the 2nd I asked for a specific week, once I sent my daughter off to college. I gave them an 8 wk. notice. Otherwise, they said they can usually get a person in between 3-5 wks. It depends on the Dr's schedule...how often does he do surgeries. How many Drs. are on staff in the practice. How many different hospitals they are on staff at? It the surgery is going to be done w/2 doctors (ortho and neuro). Then they dnned to find a time that both Drs. have an opening on a surgery day and the hospital you want to go to has an opening on the same day. It also depends how many operating rooms are at the hospital.

Good luck and keep us posted,

Lorie

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Quietcook

Notpain,

I've had 8 spine surgeries, been temporarily paralyzed, and four of my surgeries were fusions. Three were 3 levels because after one of the 3 levels, was in a wreck which broke a solid fusion, then more levels collapsed and finally, the last fusion was a 10 level fusion 9 months ago.

When the pain became unbearable, I gave in to the first fusion. But it has to be a combination of what your medical provider says and when you are ready to get relief.

A couple of other things I really want to stress though. First, please, if you are to the point of having fusion, have a true spine specialist and not a general ortho surgeon or general neuro surgeon. The difference? The spine specialist will noit only have completed a lengthy spine fellowship (I prefer a 2 year, but no less than a one year), PLUS and a must with me, that they must truly specialize in that 75 to 100 percent of their patients are spine patients. If they are neurosurgeons and doing brain surgery and other nerve related surgeries, they are not true spine specialists, but general neuro surgeons. If they are orthos and treating knees, elbows, shoulders, etc. they are not true spine specialist as they spend maybe 25% or so of their time on the spine.

So what, you say? Well, a true spine specialist is going to already be up and going on the newest technqiues approved by FDA as well as the clinical trials. The general ortho or general neurosurgeons may get around to the BMP fusions several years after it was approved; still won't be doing any Artifical disc replacements and certainly won't be doing the Dynesys flexible fusions. In fact, although they do fusions, by doing the older method, you wind up suffering with the bone from the hip which will hurt worse than the fusion and it will take you up to 2 years to fuse plus failure rate is considerably higher than with BMP which will take a few months. (My 10 levels were fused solid in 7 months, but looked good earlier). BMP fusion can use ground bone from the laminectomies done at the time of fusion, so no hip bone being drilled out, or they may prefer donor or autograph bone which increases your risk for non-fusion. BUT, the biggest difference here is that a general ortho surgeon or general neuro surgeon is only going to offer the fusion as your only option. Artifical disc replacement on one level with fusion on 1-2 levels is now approved by FDA, so a true spine specialist may, depending on your condition offer you that which allows you to remain more flexible, OR they may be able to do a Dynesys flexible fusion instead of the hard hardware rigid rusion. Lots of variables, but mainly your condition and your doctor's skills and this is why a true spine specialist is so doggone important.

You have only one back and one life. Once you are solidly fused, yes it can be taken apart, as they had to do that to the 6 levels I already had fused, in order to totally realign the spine in the 10 level job. However, once fused there's virtually little if any chance you can go back for an artifical disc even after insurance companies don't try to fight the costs, because with that time it has been fused, your muscles, tendons, etc have all atrophied and can no longer support you once again having a moving flexible back.

Finally, the second thing I wanted to address was your question regarding timing or when to have the surgery. Having tried conservative treatment is of course the thing to do. But also what I found out too late after dealing first with ortho/neuro surgeons was that because they are NOT spine specialist per se, they didn't bother or else just are not in tune to the fact that while I wanted to do all I could to avoid surgery, they did not inform me that the longer I pushed on in severe pain, trying NOT to have surgery, the more I was reducing my chances for a full recovery. On my first visit with my spine specialist, I had already been stuck, bent over at the waist for 10 months and living with horrific pain, when I learned that if a nerve which is being severely compressed is repaired/released within 6 months there is excellent chance for full recovery. That drops to 75 percent chance at 9 months and only 50 percent at a year or more. Not exact - because the amount/severity of compression, our general health, etc plays into that. I was lucky and got rid of the pain, but was left with permanent numbness in toes. Far better than not getting rid of the pain and having to deal with increasing amts and strengths of pain meds for the rest of my life while trying to mask the pain but coming immune to medications!

When I became paralyzed and then left on the virtual limb waiting to fall further into the trap so many general orthos and general neuros leave us in by saying there is nothing that can be done, it took being on that limb to realize that what they are really saying is that there is nothing more that they can do because that is the limit of their skills. They are human and cannot specialize in every area of the body, but why not admit that it's really that there is no more that THEY themselves can do, but there are others even more skilled who may help? Once I realized that and then did my research of credentials and started seeing spine specialists, then the whole world changed for the positive.

There are good and mediocre in every field AND in specialized fields. You have to find the one that is right for you, but back to the subject - you must not keep waiting while the nerves become more and more and perhaps permanently damaged. Then, no matter how skilled the surgeon, you may be out of luck and that nerve may never stop hurting, or that numbness may never leave.

So, I encourage you to be sure you have a true spine specialist who can offer you more than a hard fusion if your body and condition will allow that, and to do so quickly so as to not reduce your chances for successful recovery.

If you don't know how to search for a spine specialist I do have a post "how to find a spine specialist in your area" which you can find with the search.

Best wishes and do let us know how you are doing.

notpain

Quietcook - thank you for taking so much time to address my question. I am at almost 14 months now. According to my first MRI there is no compression on the spinal chord. Finally after a dozen doctors and I am still in pain I insisted my physiatrist write me a prescription for another MRI. Still no chord compression but my disc is now "obliterated" per the neuroradiologist who reviewed the films. I have seen the films as well and I can see the degeneration. I have terrible balance which is supposedly a result of chord compression yet none shows on the MRI. What is scarey to me is I have read that sometimes the MRI doesn't show a piece of herniated material pressing on the chord because of it's location. I am first going to try and see if I can get an endoscopic proceedure to remove the herniated material. If that does't work then I will be left with fusion as an option. I have read about autografts and there is no way I'll be going that route. I have also read about BMP and the surgeon I am consulting with on Oct. 19th has written research papers on the protein dating back to 1997 when it first came out. He did a fellowship in Chicago and specializes in spinal injury although he is an Orthopeadic Surgeon not a Nuerosurgeron. So it's still a crapshoot as I nothing about him other than his education and his reasearch papers I've found online. I will probably pay for the Healthgrade report after I consult with him. I have no insurance so I'm free to select whomever I want as long as they are willing to see me (which is tough because they all love to bill those insurance companies at full tilt).

I found it interesting in your note that you can get a one level artificial disc and fusion at the other levels. Personally from what I have read I would opt for all artificial discs if I could. But aside form leaving the country and going to germany I am stuck with the FDA. And while I understand the risks in any surgery, and the risk of a new piece of equipment I'm willing to go that route because I know the discs have been in use for 11 years now in Europe. At what point do we finally decide there is more benefit than harm? We let the government decide that for us? That is even more scarey to me - the same folks that brought you the war in Iraq, the blunder in New Orleans, and Vioxx and Celebrex? If I had the resouces I'd already be in Europe. Anways not intended to be a political ramble, just very grateful THANK YOU For your reponse.

I am still however wondering how long the average person waits to get surgery from the time the surgeon says and I agree "lets do it". My condition is declining rapidly and I am very afraid of permanent nerve damage.

Quietcook

Can't say how long the average person waits, as I often see others who know about their surgey date 5-6 weeks in advance. I've never had to wait more than 3 1/2 weeks and that was because we needed four pints of blood. I'm fortunate to have a friend with my rare negative blood, so that was achievable for my 10 level fusion. My other surgeries took place within 2-10 days of my office visits. The spine specialist didn't want to wait that long this last time since the slippage was putting me at risk for permanent paralyzation, but between the blood need and the fact my mother was not well and I needed to get her better and make arrangements for her oxygen, etc and line up people to help me insure she got her meds I prepared and that they would come see that she ate routinely while with me at the hospital, I appreciated the time. I could remind her and do things when I was awake, provided I was in my right mind, but who knows how we will react to meds, when we will be awake, etc. All worked out fine.

Not sure how surgeons decide, but if your condition is declining, once you agree to the surgery, if they don't have an open slot, would think they might reschedule one that might be less pressing.

Best wishes.

Neecywoman

after i saw my doc....surgery was scheduled in 2 weeks
Please please please....do EVERYTHING before going for back surgery. I now have 6 screws and two rods and i hurt every damn day. I could to back...i never would have had the surgery.