thoughts on long fusion

[Debra JGL]

I wanted to ask those of you with longer fusions or that may know others about the impact on motion, flexibility of having the majority of the thoracic and lumbar spine fused. I recently had an appointment with Dr. Boachie and I was very suprised he recommended a long fusion T-3 to L3 or 4. I did not ask him at my appointment why he wouldn't do a shorter fusion (as 2 other doctors recommended). I guess I was just stunned, foolish, not prepared. But I've been crying for the two days since my appointment, because all this time I thought my fusion would only go to L-1 as the longest option and I viewed this as having minimal impact on flexibility. I felt set on wanting to have the surgery before this, now I'm back to feeling very confused and that I must weigh all my options again. I do have a call into Dr. B to now ask why he wouldn't recommend a shorter fusion or if it is a possibility, and what kind of impact a longer fusion will have on me. I'm feeling like I'm on a roller coaster and I'm looking forward to being on settled ground again.

[Susie*Bee]

Debra-- What a tough and confusing time for you! I would think Dr. B with his expertise would really have what's best for you in the long run as his plan-- but it would be good to check on whether you need that long of a fusion or not, since the others hadn't thought so. Good luck with that!

Here's about me, for what's it's worth. I do have a long fusion-- T2-L4, so 15 levels... but I can't help but think that part of what is taking me longer to recover is from my added age, arthritis, and so on. Back when I was 42, my youngest daughter was just 7 and I know I was doing all kinds of things I haven't done for years now, like getting on the floor to play games, playing ball in the yard, later on tennis, etc. I THINK in a few more years I'll be doing better than I am right now, but I really don't know. I actually still feel like I'm recovering from the surgery, even though it was a little over a year ago now--but I've read it can take 1-3 years for recovery in some of us that are older. I am fairly strong again, but haven't quite got my endurance up-- and am still feeling pretty stiff and awkward, but I think that will get better as I get more used to the new me.

Since you are so much younger than I am, I imagine your recovery will be quicker and your abilities will be greater as well. You just kind of have to picture what it will be like to not be flexible at all in that area-- my fusion is about 20" long-- so if you really want to see, cut off a yardstick (or something with no "give" to it) and strap it to your back from just below your neck to right at your "gluteal cleft" (heh heh-- the technical term for "crack") That will show the length of fusion, roughly-- although our body/torso lengths may differ--I'm about 5'3". I'm not sure if that can actually give you a feel for it or not though. Worth a try, maybe. Any bending you do is more like tipping forward. You can find alternate ways to do many things, so all things considered, I don't mind being stiffer now, since everything else is better. I got great correction, pain relief, and I'm stable, and I am extremely glad I had the surgery.

Some of the more "middle age" of the over 30 bunch with long fusions may be able to give you more of an idea of what it might be like for you. But everyone is so different that it's really hard to know. Best wishes! Susie

[Writer]

If retention of flexibility is a high priority you might consider trying the Schroth physiotherapeutic method before submitting to surgery. It has a very long track record in Germany of helping patients improve their scoliotic malposture and avoid surgery altogether. There are several Schroth clinics and independent practitioners in the US now.

[Susie*Bee]

Dear Writer-- I really don't have any problem with people pursuing alternative methods, or with your posts supporting your "way"-- but I hope you realize that it's definitely not the way to go for many of us. Sometimes you make it sound so pat and that surgery is unnecessary. Some of us have complications compounding our scoliosis problems. And even if that method does have results, it seems to me that in older adults it's been the way it's been (our spines) for so long that I doubt that exercises could change things in a positive way, even over the course of several years. And then there's the need to keep it up with declining abilities and all? Doesn't sound very workable to me. What you write makes it sound like the Schroth method, by correcting musculature problems, could solve all our scoliosis problems. Even if that could possibly be true, it sure couldn't address the listhesis and stenosis problems that many of us have-- and it seems like it could actually do damage in those cases. Surgery is the only way out, as far as I can see. My curves aren't as severe as some, but if you look at my x-rays (in my signature) you can see the lateral listhesis (look at the 2006 one)-- and my mri (not available in my sig) showed severe stenosis. When you are posting to adults, (and possibly some younger people) you need to remember that it's often not a case of "just" plain scoliosis with milder curves that could possibly be addressed through the Schroth method. (And I'm not going to enter the debate on that.)

I'm not saying you shouldn't post what you post-- just saying that to me it seems like you haven't thought this all the way through when you are addressing the "older bunch" with our own serious problems.

[Geish]

debra,
I am fused from T-4 to the Sacrum...doesn't get much longer than that. I had my surgery in December of 2007. I am still in the recovery process but feel that I can live with the range of motion I have. I may not like it but I can live with it. Being fused to L-3 or L4 would probably make a huge difference in my life, however that wasn't an option for me. My surgeon wasn't sure if he could stop at L-5 even and right before surgery I looked him in the eye and told him to treat me the way he would treat his wife. I ended up fused to the sacrum, but have no doubt he did what he truly believed was right for me.

There are things that are different now and if you really want to know the impact it has on my daily life send me an email or PM and I will gladly share all of the intimate details. I am pretty up front and honest and won't pull any punches. Keep in mind my range of motion is more limited than some long fusion because I am fused to the sacrum. And long fusion that include mostly thoracic vertebrae don't limit range of motion nearly as much. BTW I went through surgery at 46 as a single mom of 2 daughters ages 20 and 15. Together we made it through and we make it work everyday.

I also want you to know I have no regrets about the surgery or the length of the fusion. I would go back and do it again in a heartbeat if necessary. I know my quality of life is better and will continue to improve over time.
Alicia

[briarrose]

Hi Debra,

I had surgery almost 8 weeks ago and was fused from T2 to L2 (13 vertebrae). Though that isn't as long as Susie's and Alicia's, I think it is still considered a long fusion. At first I was told I would be fused from T4 to L1 by my surgeon. I went for a second opinion and this surgeon said to at least L3 (you can see my x-rays in my signature and can see why L3 was suggested, but from my post-op x-ray it's easy to see that L2 was good enough). After going back to my surgeon, he had decided to increase my fusion levels after studying my x-rays more to either T2 or T3 to L2 or L3. I was upset about this at first because of the loss of flexibility. I'm only 8 weeks, but I can bend slightly at the waist. I don't do it often because I don't want to hurt myself, but I'm guessing it will get better with time. My surgeon said I should be able to touch my toes eventually (even if I had been fused to L3). This is a tough decision, but to me it was worth it. Good luck!!

Shell

[Sharshe]

hi,
I'm T3-sacrum but surgery was back in May with some set backs so I don't know what my long run flexibility will be but so far so good. I think you'll just need to relearn how to do some stuff. Also like mentioned on other threads it depends a lot on your condition going in to surgery and attitude. I sure have no regrets. I was looking to progressing curves and increasing pain. My feelings were do it now while I would get better correction/balance and easier recovery. But it does sound like a good idea to see why Dr Boachie feels the longer fusion is needed.

[Theresa]

Debra,

I am now fused T2 to Sacrum 2. I have just past my one year mark for the last surgery. In 2004 I was fused T2 to Sacrum. At first you really do notice the loss of flexiblity. But as time goes by, you will notice that at lot of it comes back to some degree. I can sit on the floor only if I have a large pillow to sit on and not for a long stretch of time. I can still bend over and pick things up off the floor just in a different way than before. I can not, no matter how many times I have tried, look under the couch, bed or something like that. I can kinda squat from a distance and see a little bit or lay on the floor and look, but getting up from that is not very pretty!!!! After the first surgery I also couldn't put my head back to gargle with mouthwash but now I can! Have you heard back from Dr. B yet? Did your other doctor have MRI's to look at and did dr B? It's possible he saw something there that could cause problems in the future like DDD and is taking that into consideration. Hopefully you'll hear back from him soon and you'll have your answer. I know waiting is tough but he is one of the best!!!! I think that you are in good hands! Try to relax and call his office again or e-mail him if you know his e-mail.

[titaniumed]

Debra
It is tough accepting the fact that they might want to go longer with your construct. The last thing the surgeon or yourself wants is for you to come back into the office down the line and find out that problems arose due to going short. Problems can occur above and below the fused area. Actually I dont think that 1 or 2 discs down low will provide all that much mobility. When it comes to bending foward, most happens from the hips anyway.

As far as mobility is concerned, I can bend foward and reach down to about 3 inches from the floor. I support with one arm on my knee so I dont rip my screws out. Im almost 6 months post now. I dont do this often since I just squat now to get down low. Squatting is something you will get used to and bending foward to pick up something off the floor isnt good for anybodys back.

I would say that some of the things Ive noticed that are of some concern are things like, getting into a car without hitting your head,that took about a month to perfect! Visibility issues are not a problem in the car. I can turn and look out the right rear window of a car. Emptying the dishwasher is the ultimate squatting exercize routine for me. My biggest complaint would have to be the fact that I cannot sleep on my stomach. Its impossible. Sleeping is done on the back or sides.

These are some things that we sacrifice by having the surgery. I was in quite a bit of pain the last few years and I can say that the old scoli pain is gone. It was a good trade for me, and getting used to the inconviences is something that you will get used to. I think of it as entering the next chapter of the book, you will enter a tough chapter and finish it and continue on. The last chapters are always the best part of any book.

"Gluteal cleft". thanks for the info Susie Bee! I no longer have to use "Crack of doom"

Ed

[Geish]

I don't know if I am the odd man out here, but I love sleeping on my stomach. It was rough the first few tries but now I have no problem. I just don't use any pillows under my head when I sleep on my stomach. I have a 4 inch Serta memory foam mattress topper and it is quite comfortable without a pillow when I am on my stomach.
It also took me about a month to perfect the getting into the car with out hitting my head thing. I have a convertible and for a while I would have one of my girls put the top down every time I had to get in or out. It was great fun in January when it was 28 degrees out and sometimes snowing!

[Susie*Bee]

Geish-- just a thought, but since both Ed and I have troubles on our stomachs, maybe it's a matter of those extra top two vertebrae... both Ed and I start at T2. It is just really uncomfortable for me and feels like I'm trying to bend where I can't bend. I can do it if necessary (like at PT), but it has to be without a pillow. Occasionally I will lie that way for just a little bit (because I miss that feeling of being on my tummy after all those years of sleeping that way) but I would never try to sleep that way, at least not at this point. But then again, I can't sleep on my side either. I'll lie that way for maybe 5 minutes, but that's about it, then I have to go back to being on my back. Oh well. I'm really used to being on my back now, so it's ok. "Small potatoes" in the big picture. Any of you other T2 or above people have problems lying on your stomachs? Although I don't want to hijack Debra's thread...

Glad you liked the "gluteal cleft" bit, Ed! But I think "crack of doom" is pretty interesting too!

Debra-- it looks like, all in all of the people who responded, we are all glad we had our surgeries and are able to compensate for the flexibility we don't have any more... It's good to know what to expect so you are not disappointed with the limitations you will have from a long fusion. But our lives are going to be much better than they would have been if we hadn't had the fusion. Who cares (not me!) if I could have hunched my back better and been more flexible, but would have experienced progressively worse pain, compromised my lung/heart function, my ability to walk, or compromised bowel and bladder function! YIKES! Give me a stiff back over those any day!

Again, best wishes as you sort through your feelings and the information you have-- and are still acquiring. It's a tough choice-- and one that is an individual thing. We are all so different-- and it may be that you are not wiling to give up that flexibility right now-- and that may be a viable choice for you. And it could be too, that Dr. B is giving you his conservative view and might change his opinion as he looks at your case longer. My surgeon changed from his decision to do A/P (I had the two dates set up till the last month or two)-- and ended up with just posterior fusion-- and there are others with similar stories. So the best bet may be to just ask him, see if he's positive it needs to be that long-- and why!, and then base your decision on what you see will be best for you in the long run. Hugs, Susie

[Janet]

Debra-

I am almost 7 months out, fused T2 - L2. I have regained a lot of flexibility - squatting is my friend - and I can get into my car without hitting my head (I had thought I'd need to buy an SUV). In fact, I feel a lot more flexible than before my surgery.

I consulted with 2 other very well respected spine surgeons before consulting with Dr. B: all 3 had proposed different approaches (posterior only or anterior + posterior, number of vertebrae to be fused, etc.). I think the reason spine surgeons differ on approach is due to their training and experience, so I'm not surprised that you are faced with several options.

I chose Dr. B not because of his proposed approach (which he revised slightly at the time of my 2nd consultation, based on his studying my MRI & x-rays again) but on other factors: his very conservative approach - he said he would not try for a "perfect" correction because he feared that doing so would put so much strain at the top & bottom vertebrae that the fusion would likely have to be extended at each end within a few years. One of the other doctors said he could achieve a perfect correction with a posterior-only approach, and I would regain all of the 3 3/4 inches in height that I had lost over the years; when I later consulted with Dr. B., I realized that the other surgeon was focused on immediate results, not on what my condition might be a few years later.

I am delighted that my back is so much straighter now - there is still a slight kyphotic hump that only the PTs have noticed, and that I regained only 2 1/4 inches. I look and feel so much better.

Your feelings of confusion, uncertainty and sadness are all quite normal - this is a huge decision to make. Give yourself all the time you need to decide what is best for you. I am sure that Dr. B. will provide you with the answers you seek (I was so overwhelmed by the decision making that even though I knew Dr. B. was the right one for me, and that I needed the surgery sooner rather than later, I waited 2 months after my initial consultation before I had the courage to actually schedule the surgery).

You are in my thoughts. Let us know what Dr. B. says.

[Qikdraw]

Debra

Well I am 25 years out from surgery and I don't regret having it. I literally would not be here if I didn't have the operation, so I may be biased on that one. I am fused from T2 - L4.

To be honest I do have problems now. What I believe, and what I am trying to get my doctors to believe, is that the discs below my rods have deteriorated because my only spinal movement has been in a few vertebrae below my rods. Twenty-five years of that and there is a problem. I'm having pinched nerves that tingle and numb my right side, leg and arm, and into my left leg at times too. Sometimes shooting pain as well, if I overdo it. I am taking this seriously, as I'm only 37 and have a lot of life yet to live. I want to get this fixed.

However, when I had surgery there wasn't really any thought on the long term consequences of the surgery. There was no physical therapy, no exercises given me. This is very important I have come to learn. Back in 2000 I saw one of the doctors who performed my surgery and he was surprised I had no exercises given me, so he gave me some to do. I didn't do them. Now I am in the position I am in. Would exercises, if I did them, have stopped disc degeneration? No I don't believe so, but it would have delayed it by a considerable margin.

I would ask the doctor who recommended the long fusion why not the shorter fusions. Always get as much information as you can so you can make a decision. In the end you still have to trust the doctor to know what they are talking about, but also know for yourself too.

Brad

[titaniumed]

When I roll over to my stomach, it feels like Im bending my rods and adding more lordosis in the small of my back. I dont think it has anything to do with being fused up to T2.

Ive done it twice now for about 5 minutes and when I stand up, it feels like Im leaning back slightly. When I see the Doc next on Aug 8th I will bring it up and of course we will look at the x-rays to see if everythings ok. Scary stuff!
I have no pain at all down low, and if I have pain it is usually up high. All my life, most of the pain was down low, and now if I have pain its up high.

Alicia is using a 4 inch foam topper and that sounds like a good idea. Its time to go back to the mattress factory. Im using a 2 inch topper, and I dont think its enough.

The addition of the foam on top of the bed was a life saver. I have a medium tempurpedic and it wasnt soft enough.

[abhbarry]

You have already got a lot of replies, but I guess my 2 cents can't hurt either - I'm fused from T12 to L3. I feel like I have enough flexibility now - just one year out of surgery. I am bending from my waist, which I didn't think I could ever do again. It is amazing how the body adjusts. My surgeon told me that I would lose flexibility, and of course, I can't bend my back, but I don't feel like it lessens my quality of life. Sometimes I forget that I can't bend or twist in certain ways now, but my body reminds me and I adjust. There are many more benefits of the surgery that out-weigh the loss of some flexibility.

Best of luck to you,
Anya