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View Full Version : I'm new and I have been suffering with pain for 8 years (post op)



SapphireTomoe
06-30-2013, 07:55 AM
I had Harrington rods and fusions when I was 12, at Syracuse University Hospital. My pain started in my hips when I was 16, I first when to a normal Dr. and they thought it was possibly ovarian cysts and the like so I went through trials with that with no luck. Then I went up to see my orthopedic dr, and he couldn't find anything wrong either, my xrays are perfect. So I went back every year complaining about hip pain, hip pain turned to combination hip and knee pain (right side) when I was about 20. I went back still nothing showed on my xray and every-time I went in I had no evidence of physical pain (go figure) which happens every time I walk into a hospital so no one ever takes me seriously.
Fast forward, just before my 23rd birthday, the pain has gotten so intense that couldn't even stand to complete my shift and work, I stand for maybe an hour at most then I would be in excruciating pain for the next 8 hrs, then I couldn't lay down when I got home because my knee, hip and back hurt so much that being in anything other than a sitting position was excruciating. even sitting was extremely painful, but it was the most comfortable I could get. I slept sitting most nights, so I left work because of this and being coupled with my social anxiety getting sever to the point I was afraid to leave my house.

I kept up on some exercises, like the ball, lifting some light weights to try and keep the fat off because I know being heavy puts strain on my back, but that too got to painful to complete. It seemed like every-time I reached a weight goal I was taken 20lbs back because I had to take so much time off because of my pain.

I went back again and they did xrays again, and nothing showed, I had a choice between physical therapy or an epidural. I chose physical therapy, which was a bad idea because my anxiety was really bad and left after about a month of it. It didn't do anything at all anyways and I was going 3-4 times a week, on top of trying to exercise at home.

I can't walk for more than 45 minutes now, and I don't really want to go back to hear the same results over and over and no one will help. I applied for disability because (TMI ALERT) I can barely twist far enough to wipe my a**, let alone work and my a** isn't big. They told me in the disability office that I only had 75% of my twisting mobility but I was fine, fine my a**! They denied me disability even though I can't stand to work, it sucks because I am only 24, who would have thought I would have been disabled at 24. NOT ME! I had big plans and I still do and this really gets in my way! I take my dog for a walk and I'm out of commission for the whole day and part of the next.

This is kind of a post to get things rolling here and to talk to people who might be in my situation.

What have any of you done to alleviate pain? I feel like nothing works and I often give up hope of ever being pain free.

Pooka1
06-30-2013, 08:12 AM
Hi And welcome. Very glad you posted as others might be dealing with the same thing.

I hope some adult patients come on here to advise you. I can only suggest that you go to a top revision spine surgeon to finally determine if your pain is due to the fusion or not. It sounds like it could be some type of arthritis completely separate from your fusion but of course I have no idea because I have no training.

I hope some one here has heard about the type of symptoms you are experiencing and has some idea of if it is at all related to your fusion or not.

Good luck.

Pooka1
06-30-2013, 08:18 AM
Just to add, I don't believe you will ever be able to rule your fusion in or out as the cause of your pain until you go to a top revision guy or at least someone specializing in spine/scoliosis. I don't think any other type of doctor will necessarily be able to help you at this point except maybe an arthritis expert who can rule that in or out.

Pooka1
06-30-2013, 08:26 AM
I just read your other post and realized your operation was in 2001. I don't think Harrington rods were still in use then.

Where does your fusion end? You say you had a double major curve. If it goes below L3 or so, you would be expected to need a revision some day as I understand it but I don't know if your symptoms map to that or something else. Other people here will know.

SapphireTomoe
07-01-2013, 12:43 AM
I do have Harrington Rods with a fusion, I don't remember where it starts but I think its either my T1 or T2 and ends near my L1 and the fusions go down to my L4 and the pain in between my L2 and L3, I also have upper back pain around my T5 which is right below-ish were the rod starts. Those spots are also painful to the touch, I jumped off the exam table in my disability physical exam because when she pressed on my spine it was a sharp stabbing pain all the way up to my neck.

rohrer01
07-01-2013, 02:19 AM
Sharon,
My DIL had her surgery 7 years ago. Her instrumentation looks eerily like Harrington instrumentation. She has the hooks and a couple of cross-bars instead of pedicle screws and a lot of rotation was left after surgery. Maybe the doctor was only trained in the Harrington procedure. She's an older lady.

Sapphire, I'm sorry to hear that you are in so much pain. I do believe you that you have Harrington's.

Pooka1
07-01-2013, 06:39 AM
I do have Harrington Rods with a fusion, I don't remember where it starts but I think its either my T1 or T2 and ends near my L1 and the fusions go down to my L4 and the pain in between my L2 and L3, I also have upper back pain around my T5 which is right below-ish were the rod starts. Those spots are also painful to the touch, I jumped off the exam table in my disability physical exam because when she pressed on my spine it was a sharp stabbing pain all the way up to my neck.

Are they just attached at the top and bottom or are there screws and hooks at several levels?

Pooka1
07-01-2013, 06:46 AM
Sharon,
My DIL had her surgery 7 years ago. Her instrumentation looks eerily like Harrington instrumentation. She has the hooks and a couple of cross-bars instead of pedicle screws and a lot of rotation was left after surgery. Maybe the doctor was only trained in the Harrington procedure. She's an older lady.

Sapphire, I'm sorry to hear that you are in so much pain. I do believe you that you have Harrington's.

Rohrer, hooks instead of screws doesn't make it Harrington rod as opposed to more modern segmental instrumentation. There are at least two girls on the group who have all hooks and no screws, both fused about 6-7 years ago, whose vertebra were too small for the screws as I understand it. But there were hooks at most levels. Harrington rods are just attached at the top and bottom. Neither has Harrington rods. They are completely different and the key difference is not the presence of screws. Harrington rods work by distraction from top and bottom whereas the segmental instrumentation aligns and de-rotates individual vertebra to my knowledge.

Your DIL may have had incompetent bones to allow screws and only had hooks. But unless the hooks were just at the top and bottom, it is not Harrington rods. Maybe Linda will chime in.

SapphireTomoe
07-01-2013, 10:47 AM
I drew a picture from what I remember of them, http://i.imgur.com/gKRrUlO.png, its done in MS Paint to its not very good. But I did pull up my records, and it states that I have a Moss-Miami rod, which is confusing to me because they call it a Harrington Rob every time I go in, and they called it that on the day of surgery, so myself and my whole family have been calling it that :/ So I have been miss-informed by my Dr.s this whole time.

It's 6.35 mm diam. Up going lamina hooks at Left L3, up-going wide lamina left L3, and right T11, bone grafts from my ribs were done, up-going left pedicle hooks at T4 & T6, reduce distance hook left downward at T10, wide lamina left hook downward T12. On the right, wide lamina hooks at downward at L1& L3, up going pedicle at T8 & T5. Wide Lamina at T4 downward to form a claw between T4 & T5. Left Rod was inserted, in the lumbar portion first, Inner and outer bolts were attached, and hook were advanced to the rod then tightened into place. The right side rod was then inserted, and seated into the hooks. Inner and outer bolts were attached, the rod was secured into place. Rods were tied together using cross-connecting plates.

I also have a flat back now when I bend over instead of a "hill", they tried to force me to bend my back at physical therapy and it was really painful and I absolutely could not but they insisted it was because I had weak muscles there., I can only bend at the top and bottom of my spine, so I can't do sit ups or crunches because of the rods either.

Pooka1
07-01-2013, 11:52 AM
I like your drawing! Your drawing rules out Harrington rods as you know know. I saw a reference saying H rods were only used up to the late 1990s. Not sure if that is true or not. Anyway, shame they didn't tell you what instrumentation you had. That sounds crazy.

Okay anyway, you are fused to L3 which even with new instrumentation available today is not immune to the need for revision, unfortunately. Did they tell you of the possibility you would need revision at some point? I am doubting it since they didn't even tell you the correct instrumentation apparently.

Anyway, the revision guys hopefully can help you.

Pooka1
07-01-2013, 11:53 AM
By the way, it sounds like you are only fused from T4 to L3.

rohrer01
07-01-2013, 05:36 PM
Rohrer, hooks instead of screws doesn't make it Harrington rod as opposed to more modern segmental instrumentation. There are at least two girls on the group who have all hooks and no screws, both fused about 6-7 years ago, whose vertebra were too small for the screws as I understand it. But there were hooks at most levels. Harrington rods are just attached at the top and bottom. Neither has Harrington rods. They are completely different and the key difference is not the presence of screws. Harrington rods work by distraction from top and bottom whereas the segmental instrumentation aligns and de-rotates individual vertebra to my knowledge.

Your DIL may have had incompetent bones to allow screws and only had hooks. But unless the hooks were just at the top and bottom, it is not Harrington rods. Maybe Linda will chime in.

You know, Sharon, I don't remember if there were any "in between" hooks. I'll have to look at her x-rays again. Next time I see her I will ask to see them. You may be right, but I definitely remember seeing much more anchoring at the top and bottom. I don't remember if there was anything in the middle. If there was, it wasn't much. So maybe she had newer than Harrington but not up to date. She's a very thin, but tall and big boned girl. I can't see the problem with using pedicle screws on her, but I'm not a doctor, either. It's not like she was a tiny wisp of a little girl, though. Skinny doesn't always correlate to bone size. When I look, I'll let you know what I see.

rohrer01
07-01-2013, 05:48 PM
Sapphire, your drawing is wonderful! It looks a lot like my DIL, so guess she didn't have Harrington's, either.

jackieg412
07-01-2013, 09:17 PM
I think that the medical people refer to the rods as" Harrington". I just had a chest X-ray that says I have "harrington rods" . I don't as mine were placed in 2008 and 2011. Maybe it is a general name for the rods in the spine?

LindaRacine
07-01-2013, 10:26 PM
I've seen quite a few errors by radiologists calling rods "Harrington" when they weren't. Guess we probably shouldn't expect radiologists who don't work close to surgeons who treat scoliosis patients to keep up on implants.

Those drawings are definitely not Harrington. They're either C-D rods or some sort of universal rod. In addition to the possibility that someone might be too thin or small for pedicle screws, it's possible that the surgeon just isn't trained in pedicle screw insertion.

--Linda

titaniumed
07-02-2013, 01:55 AM
I have attached the original Harrington rod drawings done by Dr Harrington back in 1955.

The second is a photo of the rods in their neat kit. Notice no screws back in those days. They had been using screws in other parts of the body, but not pedicle screws for the spine. We had to wait a few more decades for those.....

Sapphire, Its probably time to go see a “scoliosis” surgeon.....so sorry about your pain.

Find a hot tub....it’s the easiest way to get some relief.

Ed

Confusedmom
07-02-2013, 03:48 AM
Sapphire,

To be clear, top scoliosis revision doctors can help with your kind of pain. You might have areas of your back that never fused, which still causes pain. Or you might have developed flat back syndrome, which can make it very painful to stand up. Both of these things can be fixed, but you need to go to a TOP doctor. Where are you located? Maybe our moderator can suggest a specialist.

Also, you are right about never being able to bend. The area where you have the rods won't ever bend. That's all going to be one solid bone. I don't think it's a good idea to even attempt sit-ups and the like. Sounds like you need a more educated physical therapist, as well.

Evelyn

rohrer01
07-02-2013, 07:17 AM
I have attached the original Harrington rod drawings done by Dr Harrington back in 1955.

The second is a photo of the rods in their neat kit. Notice no screws back in those days. They had been using screws in other parts of the body, but not pedicle screws for the spine. We had to wait a few more decades for those.....

Sapphire, Its probably time to go see a “scoliosis” surgeon.....so sorry about your pain.

Find a hot tub....it’s the easiest way to get some relief.

Ed

Very interesting, Ed. Now I'm not sure again because of those thingies on the thin rods on the left.

Pooka1
07-02-2013, 07:33 AM
Very interesting, Ed. Now I'm not sure again because of those thingies on the thin rods on the left.

I have never seen H rods that were attached anywhere except the top and bottom. Any other hook anywhere in the middle rules out H rods to my knowledge. The OP has several attachment points besides the top and bottom.

LindaRacine
07-02-2013, 11:25 AM
Very interesting, Ed. Now I'm not sure again because of those thingies on the thin rods on the left.

I think that's the Harrington compression rod. They're not very common. Below is an example of an xray of that type of construct. The compression rod is the one on the left in the xray.

Secondary_Harrington_Rod (http://www.gettyimages.com/detail/photo/chest-x-ray-with-scoliosis-showing-high-res-stock-photography/sb10067350g-001)

rohrer01
07-02-2013, 03:46 PM
I think that's the Harrington compression rod. They're not very common. Below is an example of an xray of that type of construct. The compression rod is the one on the left in the xray.

Secondary_Harrington_Rod (http://www.gettyimages.com/detail/photo/chest-x-ray-with-scoliosis-showing-high-res-stock-photography/sb10067350g-001)

Thank you, Linda. It for sure isn't Harrington rods, then. But it isn't the level by level pedicle screw instrumentation like most people are getting now days, either. It is like Sapphire's.