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bluestone
12-22-2013, 06:19 PM
I have posted before about my continued pain issues and the possibility of hardware removal. I've had all the tests I can have and everything looks okay. My surgeon can only suggest removal. I've got my 3 year post op check in January so I think its time to take that step. Christmas has always ment extra pain for me and this one is no different, I hate to say it but I'm in more pain with preparations this year than I was last year so its obvious what needs to be done. I'm pretty sure its the metal because the pain is in a specific area-in the centre where I have a bunch of protruding screws. I've put it off because it all has to come out and that fills me with worry but I know i have to focus on the future and I can't continue with this pain.

There doesn't seem to be many people who have had hardware removal which does make me ask why me, why can't my body just accept it. Its frustrating because when I had this surgery I never dremot I would be having to make the decision to have more.

golfnut
12-22-2013, 08:00 PM
I truly feel for you. I know that having gone through this major surgery once, that I never want to have revision surgery, however, like you said, it might be "time to face up to it." Many on this forum are extremely pleased with their revision surgery and feel much better afterwards. I am hoping for the best for you!

JenniferG
12-23-2013, 01:19 AM
Hi bluestone, as long as I've "known" you on these forums, you've been struggling with pain. I am so sorry this has been your outcome and I hope the removal of your hardware gives you the pain-free life you've been waiting for. I remember my surgeon saying hardware removal is unusual but not nearly the huge surgery of putting them in. You should be well and truly fused now. Hope 2014 turns out to be a great year for you.

PeggyS
12-23-2013, 07:19 AM
Bluestone - I just want to say I'm thinking of you & praying for lessening pain during Christmas. I'm glad you have support of this forum!

susancook
12-23-2013, 04:01 PM
Bluestone, sounds like you have come to a conclusion that will hopefully help you. I feel lucky that my fusion went well and that I have just some random pains which can be generally tolerated. Having spinal fusion surgery is a craps shoot, sometimes it goes well, other times it does not.

You are in my thoughts and prayers that you find some relief and hat you can have an active life.

Susan

bluestone
12-23-2013, 06:05 PM
Thank you all for your kind words, I don't know what I would do without support from people who truly understand. I feel as though I'm going through the biggest dilemma ever! Most days I'm pretty happy, I have a good life, I take care of my animals and I crochet for my online shop. On the 'ordinary' days I can cope with the level of pain I'm in-its those not so 'ordinary'' days that shoot my pain levels up. If I had to go out to work the push to get this done would be greater but I can rest when I want, I lie down most afternoons. BUT I have to think about the future, one day when (if) I become a grandmother I want to be an active grandmother, I don't want pain to limit my life. I got an amazing correction for which I'm truly grateful for so I just pray that my fusion is good. I just hate the thought of having my back cut open again and I fear that by having a second surgery I could be risking even further surgery-I fear so much!

susancook
12-25-2013, 05:15 AM
Thank you all for your kind words, I don't know what I would do without support from people who truly understand. I feel as though I'm going through the biggest dilemma ever! Most days I'm pretty happy, I have a good life, I take care of my animals and I crochet for my online shop. On the 'ordinary' days I can cope with the level of pain I'm in-its those not so 'ordinary'' days that shoot my pain levels up. If I had to go out to work the push to get this done would be greater but I can rest when I want, I lie down most afternoons. BUT I have to think about the future, one day when (if) I become a grandmother I want to be an active grandmother, I don't want pain to limit my life. I got an amazing correction for which I'm truly grateful for so I just pray that my fusion is good. I just hate the thought of having my back cut open again and I fear that by having a second surgery I could be risking even further surgery-I fear so much!

It would be great if you could both do and not do surgery....and then you could see the results and then know for sure what you want. I used to counsel women who were deciding whether to have an elective surgical procedure. I would say that the best way to decide is to have you and your twin sister both have the same problem, one of you have the surgery and the other one not have surgery, and then look out 20 years and see how each person is doing in life.

Wouldn't it be great if there were guarantees with surgery? If so, you wouldn't have the pain that you do and I wouldn't have my incisional hernia! Life isn't fair! My surgeon was outstanding and when I sent her an email to tell her about my hernia, she told her nurse to tell me that it probably wasn't a hernia, that it was common for people postop to have a small bulge. I laughed as I looked down at my belly button that was on my right side and my left lower abdomen was bulging out when I laughed! I did not respond to her, but showed her my hernia at my 6 month checkup.

Yes, grandmothers need a lot of energy. I have 4 grandchildren.

Do you have confidence in your surgeon? Susan

bluestone
12-25-2013, 10:26 AM
It would be great if you could both do and not do surgery....and then you could see the results and then know for sure what you want. I used to counsel women who were deciding whether to have an elective surgical procedure. I would say that the best way to decide is to have you and your twin sister both have the same problem, one of you have the surgery and the other one not have surgery, and then look out 20 years and see how each person is doing in life.

Wouldn't it be great if there were guarantees with surgery? If so, you wouldn't have the pain that you do and I wouldn't have my incisional hernia! Life isn't fair! My surgeon was outstanding and when I sent her an email to tell her about my hernia, she told her nurse to tell me that it probably wasn't a hernia, that it was common for people postop to have a small bulge. I laughed as I looked down at my belly button that was on my right side and my left lower abdomen was bulging out when I laughed! I did not respond to her, but showed her my hernia at my 6 month checkup.

Yes, grandmothers need a lot of energy. I have 4 grandchildren.

Do you have confidence in your surgeon? Susan

I had a suspected hernia in my groin, I was convinced it was a hernia but at my 3 month review my surgeon said it may settle. A month later I showed it to my GP-he actually thought I had a double hernia-one each side of my groin and referred me to a specialist. He examined me and said it was a hernia and that he would operate when I felt ready. Thank goodness I waited because it disappeared, I'm not sure at what point it did but I looked down one day and it had gone so my surgeon was right.

I do trust him, he's been so right about many things during my recovery and I'm sure he's offering metalwork removal because he knows the screws are very protruding. If I could have just the screws removed the decision would be much easier. I think without my hardware I will be for ever checking my back again.

I've got a twin brother-no scoliosis for him though :)

rohrer01
12-25-2013, 10:36 AM
Bluestone,

First of all I will tell you that I have not had surgery at this point. With that said, my surgeon told me that if the day comes where I do have surgery, I will be committing myself to two surgeries. He said that I would NEED hardware removal after the fusion was complete. So, some of us are just different. I have a dear DIL who, in my opinion will need hardware removal. She hasn't come to that place in her mind, yet, because of the traumatic memories of having the surgery. She absolutely doesn't want another surgery. With that said, she's very young and her pain is ever increasing to where she needs daily meds AND she has a place where the surgeon left the rod too long and it's not attached to anything. This piece is protruding and can be felt through the skin. Her muscle is always inflamed there and the skin around that area is often pink from the constant irritation.

So, while this isn't an easy decision by any means. I'm definitely not trying to downplay this because of the struggles I see firsthand in my DIL. I hope that this gives you the needed relief. Living with constant back pain, as many of us do, is debilitating to say the least. I have one grandchild. I have to FORCE myself to do things with him sometimes because I just hurt. It's not as enjoyable as it should be. Right now my only options are injections. Your problems seems fixable, hopefully, especially if your pain is right where you have protruding hardware. I'm assuming you are thin. My doctor said that this is a problem with very thin people, as I am thin, too. He also said that by far, the most "revision" surgeries he does are hardware removal. So I hope this has given you a little confidence boost that you are by no means abnormal for needing this. I wish you all the best!

susancook
12-26-2013, 01:33 AM
Oh, Bluestone, I hope that I wake up and my hernia is gone. The surgeon did an ultrasound and he said that the entire length of the ALIF incision was open. If it would self-heal, I would be very, very happy!
Susan

LindaRacine
12-26-2013, 02:55 AM
Bluestone,

First of all I will tell you that I have not had surgery at this point. With that said, my surgeon told me that if the day comes where I do have surgery, I will be committing myself to two surgeries. He said that I would NEED hardware removal after the fusion was complete. So, some of us are just different. I have a dear DIL who, in my opinion will need hardware removal. She hasn't come to that place in her mind, yet, because of the traumatic memories of having the surgery. She absolutely doesn't want another surgery. With that said, she's very young and her pain is ever increasing to where she needs daily meds AND she has a place where the surgeon left the rod too long and it's not attached to anything. This piece is protruding and can be felt through the skin. Her muscle is always inflamed there and the skin around that area is often pink from the constant irritation.

So, while this isn't an easy decision by any means. I'm definitely not trying to downplay this because of the struggles I see firsthand in my DIL. I hope that this gives you the needed relief. Living with constant back pain, as many of us do, is debilitating to say the least. I have one grandchild. I have to FORCE myself to do things with him sometimes because I just hurt. It's not as enjoyable as it should be. Right now my only options are injections. Your problems seems fixable, hopefully, especially if your pain is right where you have protruding hardware. I'm assuming you are thin. My doctor said that this is a problem with very thin people, as I am thin, too. He also said that by far, the most "revision" surgeries he does are hardware removal. So I hope this has given you a little confidence boost that you are by no means abnormal for needing this. I wish you all the best!
Any idea of why they think you absolutely need to have the implants removed? I've never heard of that before.

--Linda

susancook
12-26-2013, 04:08 AM
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

bluestone
12-26-2013, 07:34 AM
Bluestone,

First of all I will tell you that I have not had surgery at this point. With that said, my surgeon told me that if the day comes where I do have surgery, I will be committing myself to two surgeries. He said that I would NEED hardware removal after the fusion was complete. So, some of us are just different. I have a dear DIL who, in my opinion will need hardware removal. She hasn't come to that place in her mind, yet, because of the traumatic memories of having the surgery. She absolutely doesn't want another surgery. With that said, she's very young and her pain is ever increasing to where she needs daily meds AND she has a place where the surgeon left the rod too long and it's not attached to anything. This piece is protruding and can be felt through the skin. Her muscle is always inflamed there and the skin around that area is often pink from the constant irritation.

So, while this isn't an easy decision by any means. I'm definitely not trying to downplay this because of the struggles I see firsthand in my DIL. I hope that this gives you the needed relief. Living with constant back pain, as many of us do, is debilitating to say the least. I have one grandchild. I have to FORCE myself to do things with him sometimes because I just hurt. It's not as enjoyable as it should be. Right now my only options are injections. Your problems seems fixable, hopefully, especially if your pain is right where you have protruding hardware. I'm assuming you are thin. My doctor said that this is a problem with very thin people, as I am thin, too. He also said that by far, the most "revision" surgeries he does are hardware removal. So I hope this has given you a little confidence boost that you are by no means abnormal for needing this. I wish you all the best!

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.

leahdragonfly
12-26-2013, 08:50 AM
Hi bluestone,

there have been a few people over the last 5 years here that I can recall who had hardware removal. I am trying to find links to their posts. Here is one link with two folks who had their hardware out:

http://www.scoliosis.org/forum/showthread.php?12209-Hardware-removal&highlight=hardware%2Bremoval

Hope this is helpful. Where is that crystal ball when you need it.

Another option to gain info would be to ask your surgeon for the contact info of any other patients of his who have had hardware removal, so you could talk with them directly. Good surgeons will provide this sort of info if they have it.

leahdragonfly
12-26-2013, 08:54 AM
Hi bluestone,

there have been a few people over the last 5 years here that I can recall who had hardware removal. I am trying to find links to their posts. Here are are links with folks who had their hardware out:

http://www.scoliosis.org/forum/showthread.php?12209-Hardware-removal&highlight=hardware%2Bremoval

http://www.scoliosis.org/forum/showthread.php?13788-Anyone-Had-Harrington-Rod-Removal-After-20-years&highlight=hardware+removal

Hope this is helpful. Where is that crystal ball when you need it.

Another option to gain info would be to ask your surgeon for the contact info of any other patients of his who have had hardware removal, so you could talk with them directly. Good surgeons will provide this sort of info if they have it.

leahdragonfly
12-26-2013, 09:05 AM
Hi bluestone,

and one more link, this one from mgs:

http://www.scoliosis.org/forum/showthread.php?11713-a-little-cheese-to-go-with-my-whine&highlight=hardware%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
12-26-2013, 03:57 PM
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
12-26-2013, 04:11 PM
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
12-27-2013, 03:09 AM
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
12-27-2013, 06:12 PM
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
12-28-2013, 09:17 PM
Bluestone, here is an abstract about fat grafts to help with instrument-related pain...

http://journals.lww.com/spinejournal/Abstract/publishahead/The_Role_of_Sacrolumbar_Fat_Grafting_in_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
12-29-2013, 12:21 PM
Bluestone, here is an abstract about fat grafts to help with instrument-related pain...

http://journals.lww.com/spinejournal/Abstract/publishahead/The_Role_of_Sacrolumbar_Fat_Grafting_in_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
01-08-2014, 10:54 AM
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.