Possible Fusion Extension Info Please

[skoshi314]

I re-posted this as a new thread with a different title hoping to get some responses.

I have a question for anyone that has had their fusion extended. In June of 2008, I was fused T-10 thru L-5. My primary curve was a thorocolumbar curve (+/- 60 degrees) with a secondary thoracic curve of +/- 49 degrees. Obviously the hope was to only go as high and as low as absolutely necessary. I've begun having a pain at the top of my fusion that extends to between my shoulder blades. Can anyone give me an idea what their pain was like that signaled the need to extend their fusion? I'm still (UGH!) on narcotic meds for pain, 13 months post op, but this is a newby to the usual pain collection I have. I do have an appointment with my surgeon on July 23 for my one year check but I'd love an some input before I go see him. I know there is so much knowledge and experience on this forum that it's the first place I go when I have a question.

Thanks in advance for any advice!

[mgs]

I don't have any wisdom for you, but I am sorry that you are having this new problem, and I hope that further fusion won't be necessary.

Your situation is a variation of a question that I have. I am having my fusion at the end of next month, and the surgeon's first look at my first set of X-rays led him to guess that he'd fuse from T-1 to L-1. .. but he did say that (with a smaller lumbar curve and some arthritis in my lumbar sign visible on X-ray) that I might be back in a decade or so to have my lumbars fused, too.

I do have minimal lumbar pain now, so I wonder if I should get the lumbars fused now, too - because, after I go through fusion once, I might not show up for the "twice".

Best of luck - and keep us posted!

[csc]

Going back for more!

Hello!
I seldom post-just read and generally find answers. I was fused from T3-L4 Jan. 08. The discs below the fusion were healthy so there wasn't a need to fuse to the sacrum. I was told that there was a one in five chance of that happening.
Around Christmas I noticed excruciating pain that was recognizable to me. It was like "Oh, no! This can't be!" Sure enough. DDD and stenosis have set in again. So that's where I am and how I knew. Trying to put off additional surgery until late March. I've been given epidurals and back on pain pills when needed. The injection two weeks ago really seems to have helped.
Sincerely hope that this is not your problem. It's going to be tough going through it again.

[summer]

Hi,
My surgeon told me straight out that if I didn't fuse to S1 I would most certainly be back for more surgery. Considering I didn't want to do that I went for the long fusion in hopes that I never have to have another surgery again.
He said sometimes the scoliosis would continue above & below the fusion. Anyone else hear the same thing???

[PNUTTRO]

Pain is a clear indicator of the need for further intervention. Usually the pain comes on gradually over a long period of time. You have to decide when is the right time to do it.

My opinion:
Always get at least 2 opinions. Exhaust other treatment options first. Get as much exercise as possible before surgery--I know, it hurts, but you will recover faster if you are in better physical shape.

p

[LindaRacine]

I re-posted this as a new thread with a different title hoping to get some responses.

I have a question for anyone that has had their fusion extended. In June of 2008, I was fused T-10 thru L-5. My primary curve was a thorocolumbar curve (+/- 60 degrees) with a secondary thoracic curve of +/- 49 degrees. Obviously the hope was to only go as high and as low as absolutely necessary. I've begun having a pain at the top of my fusion that extends to between my shoulder blades. Can anyone give me an idea what their pain was like that signaled the need to extend their fusion? I'm still (UGH!) on narcotic meds for pain, 13 months post op, but this is a newby to the usual pain collection I have. I do have an appointment with my surgeon on July 23 for my one year check but I'd love an some input before I go see him. I know there is so much knowledge and experience on this forum that it's the first place I go when I have a question.

Thanks in advance for any advice!

Hi Becky...

I have problems both above and below my fusion. The pain I have for the problem above my fusion is very different from the pain below my fusion. Above my fusion, it's not nerve pain. It's more of a fatigued muscle pain, and it comes and goes for periods of time.

I definitely think it's time to discuss the problem with your surgeon and/or another surgeon. If you want to do some searching on the problem, you'll find it described as junctional kyphosis or adjacent level kyphosis. Since you're still on narcotics this far after surgery, I would also address the issue of why you still have such significant pain.

Regards,
Linda

[skoshi314]

Thank you!

Thank you so much everyone for the responses. It's just nice to know I'm not alone.

I'm posting this on my phone because I'm out of town and will not have Internet this weekend and I'm just not good with the keys on this phone
I began keeping a diary of the different pain I have, where it's located and how severe it is. It's kind of scary to look at the changes that have taken place and the new pains I seem to have.
As my phone service permits I will keep checking back over the weekend for additional posts.
Thanks again!

[naptown78]

Good luck Becky on your journey. I have posted to you before as we are both about the same post op. Me , just over 13 months too. I really don't have any advice other than keep your chin up and look out for yourself. If you think there is a problem, keep asking until someone can give you an answer that satisfies you. There are so many variables with this type of surgery and recovery and we are all different in how we recover I have discovered. I myself am finally going for a second opinion in a few weeks for problems I have been experiencing since week one.
Again good luck and am thinking of you.

[debbei]

Hi Becky,

you said that your above the curve pain is between your shoulder blades. How would you know if this pain is because of a problem above your fusion or muscle spasms? I know my fusion starts much higher (T3) but I get terrible muscle spasms between my shoulder blades sometimes that really knock me on my butt.

I'd agree with the others that it's time to see your surgeon (or a new doctor) about your problems. Oh, I see you have an appointment coming up. Good luck, and I hope you get some relief soon.

[skoshi314]

Good luck Becky on your journey. I have posted to you before as we are both about the same post op. Me , just over 13 months too. I really don't have any advice other than keep your chin up and look out for yourself. If you think there is a problem, keep asking until someone can give you an answer that satisfies you. There are so many variables with this type of surgery and recovery and we are all different in how we recover I have discovered. I myself am finally going for a second opinion in a few weeks for problems I have been experiencing since week one.
Again good luck and am thinking of you.

Thanks Kristy. I sent you a PM.

Hi Becky,

you said that your above the curve pain is between your shoulder blades. How would you know if this pain is because of a problem above your fusion or muscle spasms? I know my fusion starts much higher (T3) but I get terrible muscle spasms between my shoulder blades sometimes that really knock me on my butt.

I'd agree with the others that it's time to see your surgeon (or a new doctor) about your problems. Oh, I see you have an appointment coming up. Good luck, and I hope you get some relief soon.

Debbe,
I considered the possibility that the pain is from muscle spasms and it's possible that's what it is but it doesn't really feel like spasms or nerve pain. It's somewhere between the muscle fatigue Linda mentioned above and a burning ache. However, on the off chance it is spasms, I've tried a couple different muscle relaxers that typically take care of any spasms I have and they've not helped.

I'm very anxious to see my surgeon next week. I feel like the "I can't find anything wrong" response is a double edged sword. While I will be thrilled beyond belief and relieved, I'll also wonder why the heck I'm still in so much pain. I'll cross that bridge when I get to it.

Thank you everyone for your input. You're all such wonderful friends!

[debbei]

Thanks Kristy. I sent you a PM.


Debbe,
I considered the possibility that the pain is from muscle spasms and it's possible that's what it is but it doesn't really feel like spasms or nerve pain. It's somewhere between the muscle fatigue Linda mentioned above and a burning ache. However, on the off chance it is spasms, I've tried a couple different muscle relaxers that typically take care of any spasms I have and they've not helped.

I'm very anxious to see my surgeon next week. I feel like the "I can't find anything wrong" response is a double edged sword. While I will be thrilled beyond belief and relieved, I'll also wonder why the heck I'm still in so much pain. I'll cross that bridge when I get to it.

Thank you everyone for your input. You're all such wonderful friends!

Becky,

My muscle tightness between my shoulder blades continues, off and on. Since I was at the surgeon last week, he reassured me that I could take motrin safely, because evidence of fusion on the Xrays is looking very good. I've taken it 3x already, Saturday morning, Sunday morning and yesterday morning. OMG I can't believe--it takes all that tightness away for the WHOLE DAY! I don't quite understand why, but it makes me feel totally normal. I'd prefer not taking it every day, but on those really bad days, if it makes me feel better---wHOOHOOOO!!

Let us know what the Dr. says, and good luck. You'll be in my thoughts.