Time to face up to it

[leahdragonfly]

Hi bluestone,

and one more link, this one from mgs:

http://www.scoliosis.org/forum/showt...ware%2Bremoval

I can't find her earlier posts right now, but you can click on her profile I think it is to find all her other posts. I recall she posted regularly leading up to her hardware removal, which I think she says was done for pain.

You can also search for "hardware removal" and there are at least 12 pages of posts, many of which don't apply, but most of the posts discussing hardware removal turn up there if you sift through them.

I wish you the very best of luck in deciding the next step.

[rohrer01]

Any idea of why they think you absolutely need to have the implants removed? I've never heard of that before.

--Linda

Because of where they would be in my neck. His opinion is that it would protrude quite a bit.

[rohrer01]

Rohrer, I know that you may have explained this before and I may have misread your entry, but if you have a scoliosis/spine problems and are in a lot of pain, why are injections your only option? Why isn't surgery an option? Susan

I have an unusual curve type and my surgeon isn't convinced that the scoliosis is the cause of all of my pain. My curve is also not huge, however it is impinging on my heart, something that my surgeon is not aware of, yet. My heart is functioning normally, though, so I doubt that this would change his opinion much.

As far as my pain not coming from my scoliosis? I think the scoliosis may be a result of other abnormalities that I have. I have torticollis (cervical dystonia) which gives me SEVERELY hard muscles in my neck. They literally crunch when a needle is put in them, as when I got my nerve block for shoulder surgery. That was very tough for the anesthesiologist to do because it took a lot of strength just to put a needle through the muscle. I also have some other muscle disease that is causing severe weakness and paralysis of some muscles. This can also cause pain. So for now I'm getting Botox and trigger point injections in my neck and shoulders/upper back. I get epidurals for my lower back pain which help some. I had an SI injection that also helped. That and medication are the only things I have to help these conditions. Back surgery would likely not help with pain because these other conditions would remain. My biggest concern is for my heart.

I don't want to hijack Bluestone's thread to talk about me, though. I just wanted to reassure her that hardware removal isn't that uncommon and there are valid reasons for having it done. When she gets into the right mental place, as we all need to be when making these decisions, it will be easier for her to decide what she wants for sure. Unfortunately, no medical procedure comes with any guarantee.

[susancook]

Thank you for your reply, it makes me feel a bit less of a 'failure' because that's how I've been feeling. So many people keep their hardware in that it makes me feel like I've failed in some way needing to have it all removed. My surgeon has said many times that I have zero fat on my back. I'm not thin-size 10-12 but my back is literally skin and bone. I do know of thin people though who have no problems with their hardware. I don't know whether some people's hardware is sunken in deeper, maybe a question to ask my surgeon but I am certain that it is only the protruding screws causing the pain. He told me my curve was extremely stiff and that to get it as straight as he did he used big screws 'bunched up' which is probably why I'm having a lot of pain there.

I just wish there were posting from people who have had hardware removal and felt much better for it.

I hope your DIL finds the strength soon to have her hardware removed. Your right you know when you have reached that 'place' in your mind to go through another surgery. I'm still not 100% that I have but I see my surgeon on 6th Jan for further discussions.

Oh, Bluestone, it makes me sad to think that you feel like a failure because you are investigating having surgery to have your hardware removed. If I was in such pain and that seemed to be the cause, I would do the same thing. It would be great if the source of your pain could be exactly pinpointed and accurately diagnosed and if the surgery to alleviate that pain was always 100percent successful. There are probably fat people and thin people and people with short screws and long screws that have pain that might be from their hardware.

I hope that the resources that Gayle provided are helpful to you and that talking to others w ho have had their hardware removed is also helpful. And, if you do have your hardware removed or have another treatment done, I hope that you have decreased pain.

Keep us posted on your journey as we are all on your team cheering for you to have a better life with less pain. You are in my thoughts and prayers, Ever-so-gentle-hugs, Susan

[bluestone]

Thank you Susan, i don't know what I would do without the support of forums, it made getting through my fusion surgery easier knowing there were people who had faced the same thing.

The decision to have my fusion was easy compared to making the decision to have removal. I've not known a day without pain for the past 22 years, I'm kind of used to pain but I guess my journey to have less pain isn't over yet.

[Pooka1]

Bluestone, here is an abstract about fat grafts to help with instrument-related pain...

http://journals.lww.com/spinejournal...the.97448.aspx

Spine:
POST ACCEPTANCE, 2 December 2013
doi: 10.1097/BRS.0000000000000146
Case Report: PDF Only
The Role of Sacrolumbar Fat Grafting in the Treatment of Spinal Fusion Instrumentation-Related Chronic Low Back Pain: A Preliminary Report
Salgarello, Marzia M.D.; Visconti, Giuseppe M.D.
Published Ahead-of-Print
Collapse Box
Abstract

Study Design. A report of two cases.

Objective. The purpose of this paper is to report two preliminary cases with instrumentation-related chronic low back pain successfully treated with fat graft in the sacrolumbar region.

Summary of Background Data. Patients undergoing successful spinal fusion surgery may experience new or recurrent chronic low back pain. Instrumentation-related soft tissue irritation is a well-know etiology of this frustrating condition. Treatment options vary from conservative treatment till instrumentation removal, with no consensus on their efficacy.

Methods. A 32 and 37 years old patient with instrumentation-related debilitating chronic low back pain VAS 7 and 10, respectively, underwent one session of fat grafting in the sacrolumbar region.

Results. At 9-month and 6-month follow up, both patients reported a substantial pain relief, a considerable improvement in daily quality of life and satisfaction for less implant palpability and visibility.

Conclusion. The encouraging results of these preliminary cases may open new horizons for a multidisciplinary approach in treating instrumentation-related chronic low back pain. Fat grafting may represent a valid and minimal invasive option to be taken into account when established therapeutic options fail. Further experience with longer follow-up is needed to confirm our findings.

(C) 2013 by Lippincott Williams & Wilkins

[bluestone]

Bluestone, here is an abstract about fat grafts to help with instrument-related pain...

http://journals.lww.com/spinejournal...the.97448.aspx

Fat transfer was discussed at a visit to the pain clinic and I was booked in to see a plastic surgeon to discuss it further. I was told though that it won't improve my pain, it is to make my back feel more comfortable especially when leaning against the protruding screws. I decided against going to the appt to discuss it further until I spoke with my surgeon because I'm concerned about the risk of infection when they inject around the hardware. I notice this article only mentions relief in the lower back-all my pain is thoracic, I'm also concerned that my pain is very much internal so I doubt transferring some fat would help much with actual pain relief but I will ask my surgeons opinion on it when I see him in a weeks time.

[bluestone]

I am now on the waiting list for injections, my surgeon thinks it would be a good idea to try them because I am very reluctant to got for removal. He informed me that he hasn't removed hardware from any of his patients for the past 10 years-I don't really want to be his first so I will try anything that's suggested before I take the drastic step of removal.