Heavy back feeling post revision

[curlygirl]

I have not posted here in ages! My “back story” is all in an older thread and I thought I’d start a new thread for this topic.
I decided to go ahead and have revision surgery as I had worsening sciatic pain, rapidly increasing deformity, increasing flatback syndrome causing me to pitch forward, and a “deadline” on how long my bone density would be adequate to undergo surgery.

After long and hard consideration, I decided to go with Dr. Lehman at Columbia/NYP. He was very impressive and I was very comfortable with him.

I had the surgery in November, 2021 at The Spine Hospital in NYC. This was in two stages, OLIF L4/5 with a vascular surgeon and posterior T3 – Pelvis two days later. I wasn’t thrilled about the long construct but he explained that he had to get up to T3 to correct the flatback, as given my age and bone density, he wanted this to be a “one and done” remedy.

Basically everything went really well. No more sciatic pain, right rib and hip are no longer touching, I’m no longer leaning forward, and two inches of height were regained so I now stand at a towering (HaHa) 5’0.” Dr. Lehman sent me to a former Wash U colleague at Mayo here in Phoenix for interval follow-up appointments and x-rays. I had my one year follow up in NYC in late October and everything is in place and looks good – at least on paper.

However, I have a huge problem that nobody can seem to figure out. I feel like I am wearing a gigantic heavy backpack at all times. It’s quite uncomfortable and when I walk I feel like I’m being pulled backward by my hardware with every step even as I try to propel myself forward. The feeling is constant such that I never feel “normal.” It’s not pain, it’s a strong sensation of heaviness and backward pull. I have been going to PT almost since being released from the hospital and have many exercises that I still do but they don’t help with this, nor does walking about 2 miles daily, every day, no matter what.

Dr. Lehman didn’t have an explanation at my follow-up appointment, other than to say that I was possibly used to being pitched forward for so long that now that I’m standing straight it feels like I’m being pulled backward. His nurse did put me in touch with the head of PT for scoli surgery at Columbia who walked me through a bunch of exercises over the phone, but nothing is making a difference. I’ve had about 10 treatments from a myofascial release therapist who is very good and who “gets” scoliosis surgery, but it hasn’t helped. I have seen a few other posts about this problem on this forum, but they are old posts and nobody has reported back on what happened to them. Since I’m a tiny woman, sometimes I wonder if the hardware is too big for me, but it’s hard to imagine an experienced surgeon not customizing the hardware size to the patient, and I know they work on kids who are way smaller than me. I’ve been hesitant to ask that question as it sounds confrontational.

Does anyone have any ideas?

Thanks,
Irene

[jackieg412]

Hi Irene, I have also had multiple revisions. When the surgeon did the last one, he warned me I could feel like I would be feeling like I would be falling backwards. At times I do feel that. I also have a problem choosing the shoes that are best.
It may settle down in time.

[Tina_R]

Hi curlygirl. I read your post a while ago and have been meaning to reply. I keep having trouble with the scoliosis.org site. It keeps not recognizing me or my password so that I have to keep resetting it but it makes it impossible and I once had to call an administrator to get it reset.

Anyway I'm here now and will make the most of my time before I'm locked out again. I have this same problem, maybe a bit different because it not only feels like a heavy weight, like a backpack, is on my back, but like there is rigidity of the muscles in my back.

I feel like there is a hook in my back with a heavy weight attached pulling me backwards and causing me stinging pain. But also that the muscles in that spot are clenching and going rigid to varying degrees. I even fear that the tight muscles are not letting me breathe properly, although my oxygen levels look fine whenever I'm at the doctor's office. It's a terrible feeling, worse than the pain. And I think it's progressing. I don't know where this will end up.

A doctor and a physical therapist disputed that the muscles are actually rigid but my husband agrees with me that they feel that way.

This all started with my second scoliosis surgery which was about six months after my first. And not right after the surgery but it developed about four months later. I was optimistic about everything and fearless and seemed to be recovering well. I would briskly walk for exercise and was doing fine. Then the tightness and feeling of weightiness started gradually and I developed gait and balance problems as well. It got worse and worse and I am doing rather badly now. I have a handicapped parking plate.

My surgeon denied it had anything to do with the surgery. My scans and MRIs looked good. He says I must have developed a neuromuscular disease by coincidence and I should see a neurologist.

I have seen a string of neurologists and more surgeons as well and no one can find anything wrong. They pretty much all do the same kind of tests, though. Same physical exam, same EMG test. Somehow I need someone to take a fresh look at it.

I was over 60 when I had my surgeries. I think spine surgery is not great for people my age, not that there's a choice when you have scoliosis. And if there's no physical cause for my problems I'm thinking that some people do not adapt well to the changes the surgery brings about and their body reacts in weird ways..

[curlygirl]

Tina - our problems seem rather similar. I don't recall feeling this way until a few months after the surgery, and the sense of heavy weight pulling you backwards - wow - I thought I was the only one. I'm in some other support groups on FB and have been asking questions and nobody else reported this. I don't have the stinging feeling, though. I feel like maybe the tension on the rods has gotten stronger, but there's no way to know that. I saw a local scoli surgeon with a good reputation and he could find nothing wrong either. I am upset that surgeons, with their wealth of experience, leave it to us to figure out this very difficult puzzle. I'd like to discuss this more, will send you a PM if I can figure out how to do it.

[theizzard]

I have the feeling of a very large and heavy weight pushing me forward at all times but sometimes it’s worse. I have no idea what to do about it.

[curlygirl]

Hi "TheIzzard" - when did you have your surgery and what did you have done? Have you seen anyone about it? I'm sorry you are experiencing this.

[theizzard]

Last surgery was in 2021 and I had the gap between cervical and thoracic filled in. I am fused from cervical through sacral. That was because my head was falling forward and I couldn’t keep it upright. It did what it was supposed to do only now I am tilting forward again. The feeling with the weight is from the back of my head to where thoracic begins. Adding insult to injury I have been suffering with hip/butt pain down through my calf on my left side. I can barely walk and yet I can’t get an appointment with lenke!!

[curlygirl]

Did Dr. Lenke do your surgery? Wondering why you can't get in if that's the case. I have been thinking that surgeons know how to do the surgery but don't know how to troubleshoot.

[theizzard]

No it was done at Penn in Philadelphia. I tried to see him before the last surgery and gave up. I’m thinking of going back to Boston to see dr Rand who did my first long fusion.