My recent kyphosis surg :)

[Ryy]

Hey all,

Now almost 8 wks post op and doing very well. I can pretty much do all the basic things for myself now with no help. I'm still sort of stiff and it takes a minute to get loose after sitting or laying down for a while, but that's getting better every day. My main concern is my neck. It wants to look down, and it sticks out forwards. I get fatigued easily if i hold it up and tucked back. It it gets worse, what is the treatment? I can't find much on it online anywhere. If it is junctional kyphosis or it develops or my prob persists, what's there to do? Just keep fusing up? Doesn't that get really risky, the higher the fusion? Hopefully it works itself out but being 8 wks post, i'm worried it won't. Anyone with more info on the neck thing would be great to hear from.. Anyways take care and have an excellent weekend!

[JenniferG]

I wish I had some answers for you but just wanted to say I'm sorry this is a continuing concern for you and I hope you get some answers soon. Have you emailed your surgeon your concerns? You've had to deal with this for some time now, I think you need some answers. Best of luck Ryy.

[Snoopy]

Hi Ryy,

My daughter is fused from T3-L2. Before surgery, her Scoliosis was 46* and her Kyphosis was 71*. She did really well with her recovery until her one of her early follow-ups. I noticed that her neck seemed to lean forward and I mentioned it to the doctor who confirmed it and so did the x-rays. He wanted to see if it settled down so he saw her month after that for a while. I could see it getting worse from appointment to appointment. Finally the doctor told us if it has gotten worse at the next appointment, we'd need to discuss more surgery. Next month, it had progressed again and he wanted to schedule surgery. We weren't ready for that and asked if we could wait for a while and he agreed. By the next appointment, it had not progressed.

As her mom, I can see the Kyphosis, but most people can't. I gave her the option of whether or not to have surgery and she said not for a cosmetic reason. Thankfully, it has not started progressing and we pray that it won't as she ages.

I have posted pictures of Jamie's x-rays on another post, I think it is the one called "before and after pictures" and I don't remember if I included a side view of her post-op x-rays. If I did you can see what her next looks like there.

As others have said, you need to address this with your surgeon. When is your next follow-up appointment? If it isn't soon, I'd suggest calling the office to see if you can get an appointment soon.

Hang in there.

Mary Lou

[Ryy]

What surgery did the dr want to schedule Snoopy? If more fusing, up to which level? It's hard to see high up there on the photos you posted. How high up was her kyphosis pre surgery?

My curve was pretty high, and i'm fused up to T3. My upper back (way up behind my neck) still looks pretty curved, which pushes my neck out forward, so much that when i look up, there is a crease in my skin from where my upper back meets my neck back there. Anyone else with more info would be excellent to hear from. I'm at a loss until I see my doctor. I'm afraid that if he suggests another fusion up there, that my neck will just totally drop down, and then what? Alright guys take care

[Snoopy]

Ryy,

You're asking some tough questions....her surgery was almost 6 years ago, so it's hard to remember everything, but I'll try.

The doctor was suggeting extending her fusion into her neck area, maybe
C5/C6 area? Not sure. I don't remember how far up the Kyphosis went. If I get a chance, I'll look it up for you.

Mary Lou

[titaniumed]

Ryy

I have to agree with Mary Lou, the answers to your questions are not going to be easy.....

I know that surgeons don’t like to go back in quickly.. this situation of yours will take time. I think that after a while, if your problems are an issue, your surgeon or surgeons will offer a possible solution that might include more surgery. How will they proceed? I have no idea.

I wish I had some answers for you, but only a surgeon can make that decision.

Ed

[hdugger]

Hi Ryy,

I've been making note of patients whose necks curve forward after surgery (because my son has kyphosis, along with scoliosis, and kyphosis patients seems to be particularly at risk). Although I think I've seen about ten instances of people mentioning neck issues after surgery, I haven't seen one yet where they actually extended the fusion in order to resolve the issue. And, that lack of treatment seems to have worked out OK for all of the patients.

Your doctor is the only one who can really sort this out, but I just wanted to let you know that it *seems* like the issue mostly resolves itself satisfactorily before it gets as far as surgery. People note that their neck curves a bit, but it doesn't end up being a big deal (or, at least, it's not a big enough deal to drive them to further surgery.)

[foofer]

Hi Ryy,

I've been making note of patients whose necks curve forward after surgery (because my son has kyphosis, along with scoliosis, and kyphosis patients seems to be particularly at risk). Although I think I've seen about ten instances of people mentioning neck issues after surgery, I haven't seen one yet where they actually extended the fusion in order to resolve the issue. And, that lack of treatment seems to have worked out OK for all of the patients.

Your doctor is the only one who can really sort this out, but I just wanted to let you know that it *seems* like the issue mostly resolves itself satisfactorily before it gets as far as surgery. People note that their neck curves a bit, but it doesn't end up being a big deal (or, at least, it's not a big enough deal to drive them to further surgery.)

HDugger, do any of your notes show that these patients had neck complaints before surgery?

[hdugger]

That's a good question, Foofer. From some of the pics posted, many of them carried themselves "head forward," but I don't know if that's the case with all of them. Nor do I know if getting yourself out of the head forward posture (as my son has somehow managed to do) before surgery helps to fend this off.

Ryy, did you have any neck issues before surgery?

[Ryy]

Thanks Ed. I have an appt coming up soon. I def don't want more surgery, yet again a last resort of course.

hdugger,
I didn't have any neck issues pre-op other than the normal forward head thing with kyphosis. It never caused any pain/discomfort though. If it was, the back pain overpowered it and i didn't know. My head looks more forward now, not sure if it really is or it just looks like it is because my back is now straighter. My doctor didn't overcorrect me, he left a good curve in me.

Kyphosis curves aren't in the same spot for everyone that has it. Some are high up on the back and some are lower. Mine was/is very high up, which I think makes it harder to keep a good sagittal balance without fusing up into the neck..

Doesn't it get risky when fusing way up to the cervical spine? What are the risks? Hm I Don't want the natural curve in the C spine to reverse and get a whole lot worse than my situation now, where i still have the somewhat proper curve up there. Well I'll see what happens, thanks for the replys guys!

[JenM]

Hi Ryy, Foofer, and hdugger-

The same thing that is happening to Ryy happened to me after my surgery in June. My neck was fine for 3 weeks after the surgery, and then it collapsed and just wanted to look down for the next 8 weeks. It was one of the scariest times of my life as I thought it would be that way forever. After tons of physical therapy, I finally was able to look straight ahead for the entire day. However, now I am having shoulder blade pain which is coming from the cervical spine. Like Ryy's, my neck looks alot more forward than it did before. I also had kyphosis high up. I thought that after I had surgery to correct my scoliosis and kyphosis that my neck would look more normal. However, it looks like it is leaning more forward than before surgery, maybe because my back is straighter and you can notice it now. My surgeon didn't overrcorrect my curve either. My curves were in the high fifties before surgery (and I had a 68 degree kyphosis curve).

Foofer - just wanted to tell you I had some neck pain before the surgery, but nothing like it is now. I am 5 months post op and still have to lie down a few times during the day to have my neck feel better. I never had the back of the shoulder blade pain before, am I am 100% positive it is coming from my neck.

Foofer and Ryy- Sorry I didn't respond back to your emails. I usually collapse and go to bed at 8pm ( I used to go to bed at midnight before surgery!!). I have a 3 and 5 year old who get up at 6am and they totally tire me out, I am backed up on my emails. I will get back to you as soon as I can! The pain in my neck and shoulder blade really wear me out. THe one thing I can say is my doctor put me on a NSAID and it is helping alittle.

Talk soon,
JenM

[hdugger]

The neck thing is really throwing me for a loop. Without it, we'd just be on the fence about surgery. With it . . . I just don't see how we'd justify taking my son from a place where he's in no pain and has no serious issues (even though he has largish curves) to having ongoing issues with his neck.

Linda (if you're reading) is this something new that's come up since the use of pedicle screws? Or, if not, is there some reason why there isn't more interest/research/resolution about this problem?

I've read the research that says that they can't pin down the causes of PJK, but every single person with a kyphotic curve (with or without scoliosis) that I've watched go into surgery has come out with this problem. I don't see how the two things can *not* be related.

[Snoopy]

The neck thing is really throwing me for a loop. Without it, we'd just be on the fence about surgery. With it . . . I just don't see how we'd justify taking my son from a place where he's in no pain and has no serious issues (even though he has largish curves) to having ongoing issues with his neck.

Linda (if you're reading) is this something new that's come up since the use of pedicle screws? Or, if not, is there some reason why there isn't more interest/research/resolution about this problem?

I've read the research that says that they can't pin down the causes of PJK, but every single person with a kyphotic curve (with or without scoliosis) that I've watched go into surgery has come out with this problem. I don't see how the two things can *not* be related.

hdugger,

I feel your pain and confusion. As a parent, making the decision to allow Dr. Segal to do surgery on Jamie was the hardest thing I've ever had to do and I've had to do deal with some very difficult situations over my lifetime.

Jamie's surgeon told us before surgery, the PJK was always a possibility. He discussed it just like he discussed the risk of bleeding, etc. I'd be curious to know if other surgeons mention this at a pre-op appointment for patient's without Kyphosis.

When you asked Linda if this is something new that's come up since the use of pedicle screws, are you thinking the screws have something to do with PJK? If so, sorry, Jamie doesn't have any screws in her back.

Mary Lou

[hdugger]

Hi Mary Lou,

Of the people I've tracked, you're the only one I recall where the doctor mentioned it beforehand (and talked about what he was going to do to counteract it, as I recall).

I just don't understand why this isn't a bigger deal in the literature. If fusing a scoliosis curve almost always caused the compensatory curve to *grow,* the literature would be about nothing else (and doctors would be having some very different discussions with their patients). Is it just because kyphosis affects such a small percentage of the spine patients?

The good news, so far, has been that these neck problems seem to be self-limiting. I haven't seen anyone who's gone back in for surgery, or even who continues to perceive it as a major issue after awhile. But it does make it much harder to evaluate the risks and benefits of this surgery.

(Oh, I take that back. There was one person who went back in for surgery, but he smoked during recovery, and I always attributed his fusion failure to that.)

[Elisa]

I have to ask what PJK is. I tried to look it up but only got weird urban dictionary meanings which I know is not what you're talking about here.