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lynn12
@lynn12

Posts: 10
Joined: Aug 16, 2018

Chronic pain and spinal fusion

Posted by @lynn12, Thu, Aug 16 9:14am

Hi
I am wondering if there is anyone out there has experienced what I am dealing with? In 2006 I had a spinal fusion from T2 through L4. Actually the fusion failed and after one year had to be repeated, this time using a bone morphosizing protein that ensured fusion. Like most who have endured a surgery like this I am left with chronic pain. I have through the years also developed quite a dowagers hump. The surgeon explained that my problem went up so high that she actually bent the rod a bit forward during surgery otherwise noting that I may become off balance. As the years have gone by this hump is looking more and more pronounced. I absolutely hate it and feel so ugly, can anything safely be done or does it involve another dangerous surgical procedure? As you can imagine the thought of more surgery is frightening to me. What complicates matters is I am on Warfarin (blood thinner) due to aortic valve repelacement in 2001. Any surgery for me is always more complicated.

REPLY

Hello,@lynn12. Oh my, what pain you must be in. I have had two back surgeries and one procedure which failed. I have two braces which help when I wear them as needed. I have DDD and spinal stenosis, Arthritis in all my joints, and severe Fibromyalgia. I have a cane and a walker, but I try to avoid using them. I don't want to be dependent on them. If I am shopping, I must have a buggy. A dear young friend had a spinal fusion a few years ago. I will try to contact her to see what worked for her. I will also do some research on the subject and get back with you. You are definitely in the right place. Different people will share their experiences with you. Some will direct you to procedures, methods, doctors, and clinics. Be your own consumer advocate. Love yourself. Practice self-care and honor this body. You are worth it! Love and light!
Mamacita

Thanks so much!

Hello @lynn12, in addition to @mamcita's post, I would like to invite @kimi, @artscaping, and @annmerc who have discussed having spinal fusion's as well to share their experiences with you. I would also like to invite @irene5, @steeldove, and @rnwholovedtowork who have all discussed kyphosis, which I believe is similar to dowager's syndrome. Lynn12, if you don't mind sharing, have you talked with your provider about the hump and your concerns with it?

I also have had a failed fusion but my level is L5 S1. I had my surgery in 1994 and I had a good 12-15 years before my fusion failed. The worst area for my pain is my right sciatica nerve which was damaged during my fusion and my lower back. I do have arthritis throughout my body, spinal stenosis as well as major gastrointestinal issues. I have constant chronic pain but I am now in a gym type of setting for wheelchair users and they have taught us how to safely use the various pieces of equipment to try to build muscles and gain strength. It is in a university operated program so we work with students who keep us working out and they provide great encouragement and empathy.

@JustinMcClanahan

Hello @lynn12, in addition to @mamcita's post, I would like to invite @kimi, @artscaping, and @annmerc who have discussed having spinal fusion's as well to share their experiences with you. I would also like to invite @irene5, @steeldove, and @rnwholovedtowork who have all discussed kyphosis, which I believe is similar to dowager's syndrome. Lynn12, if you don't mind sharing, have you talked with your provider about the hump and your concerns with it?

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Thank you for your reply. Last time I saw my surgeon I only discussed the constant vice like grip pain in the thoracic area. I didn’t bring up the ugly hump in my back. The surgeon stated that some people get relief by removing the hardware. I was told that surgery would involve two days of surgery aboout 12 hours each time. I was told while some benefit from this surgery, some can end up worse off. There is no way I will sign up for more surgery like that!

So sorry you are dealing with this.

@marychapman

I also have had a failed fusion but my level is L5 S1. I had my surgery in 1994 and I had a good 12-15 years before my fusion failed. The worst area for my pain is my right sciatica nerve which was damaged during my fusion and my lower back. I do have arthritis throughout my body, spinal stenosis as well as major gastrointestinal issues. I have constant chronic pain but I am now in a gym type of setting for wheelchair users and they have taught us how to safely use the various pieces of equipment to try to build muscles and gain strength. It is in a university operated program so we work with students who keep us working out and they provide great encouragement and empathy.

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@marychapman
Good Morning!
I am so sorry that you are having such difficulties.
At the end of February, I had 2 artificial disc replacements on C4/5.
I was told then that fusions last only so long before they need to be done again in addition to needing fusions on the discs below.
I was told that fusions are like dominoes. You do one set then eventually the next set below will need to be done (when, not if).
I was also told that in some instances, disc replacements do not work and another surgery for a fusion may need to be done.
So far, so good.
Although I am not in the medical field, it sounds to me like your fusion did not really fail, it just lived beyond its point and another must be done.
You are doing a great job working on yourself with the back issues you have.

Ronnie (GRANDMAr)

@marychapman

I also have had a failed fusion but my level is L5 S1. I had my surgery in 1994 and I had a good 12-15 years before my fusion failed. The worst area for my pain is my right sciatica nerve which was damaged during my fusion and my lower back. I do have arthritis throughout my body, spinal stenosis as well as major gastrointestinal issues. I have constant chronic pain but I am now in a gym type of setting for wheelchair users and they have taught us how to safely use the various pieces of equipment to try to build muscles and gain strength. It is in a university operated program so we work with students who keep us working out and they provide great encouragement and empathy.

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How is your pain level, it sounds as though you are doing well, so happy to hear that. Thank you so much for your response.

I wish I had been to,d this info prior to surgery. I am so frightened of more surgery. Any surgery for me is very complicated as I am on a blood thinner for life and a 12 hour surgery is risky. My two prior surgeries involved a large amount of blood loss, I was in ICU over 10days. I don’t believe I could physically or psychologically go through it ever again. Well I say that but realistically I had no choice. For years I dealt with pain before any surgery but my plan was never to do surgery, just keep doing epidurals and PT. Everyth8ng changed from an accident my already very troubled spine (bone spurs, scoliosis, degenerative disc disease, spondliyothesis, etc) become completely unstable. This was the one factor that changed everything. I was t9ld by my surgeon that walking is the best thing I can do for myself. I religiously walk every single day. For certain I walk a minimum of at least 4 miles but very often walk between 6 and 10 miles. I am not speedy at all an de it takes me hours but feel as though I am doing everything I can.

@marychapman

I also have had a failed fusion but my level is L5 S1. I had my surgery in 1994 and I had a good 12-15 years before my fusion failed. The worst area for my pain is my right sciatica nerve which was damaged during my fusion and my lower back. I do have arthritis throughout my body, spinal stenosis as well as major gastrointestinal issues. I have constant chronic pain but I am now in a gym type of setting for wheelchair users and they have taught us how to safely use the various pieces of equipment to try to build muscles and gain strength. It is in a university operated program so we work with students who keep us working out and they provide great encouragement and empathy.

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Hi Ronnie
Thanks for this info as I never heard this before and have wondered why so many fusions fail. My spine is such a mess that the dr has said that he wouldn’t do any more surgeries on me as that could just make me worse. Although I’m in a wheelchair or use my small scooter I can also walk in my home for short distances and I work hard to keep moving as I am afraid to lose this little bit of mobility that I have. It can be exhausting but it’s something that I must keep doing.

Mary. I have a terrible spine and neck. I have RA and only God knows how long before I cannot walk anymore. I force myself to walk my dog 4 times a day. I come home hurting so bad that I must lie down. They did shot a week ago and doctor "warned" me that if this did not help at all, he cannot do anymore shots. First time I had shots and I cannot believe he is giving up that easy. Doctors today.. I just don't know what to say anymore about them. After telling him HE IS GOING TO DO MY NECK again, I have an appt on Monday. The neck shots hurt terrible, but if it will work HELP ME. And of course, no pain pills. I would not even be able to tolerate the pain if I did not have the Hemp Lotion. I know I don't want to get addicted to heavy duty pain meds, but what else can we do? My spine doctor said he could fit me with a brace. Oh great wonder what that would be like? I fell about 6 months ago and have concrete in my Veritibra. Keep my spirits up and keep going.

@marychapman

I also have had a failed fusion but my level is L5 S1. I had my surgery in 1994 and I had a good 12-15 years before my fusion failed. The worst area for my pain is my right sciatica nerve which was damaged during my fusion and my lower back. I do have arthritis throughout my body, spinal stenosis as well as major gastrointestinal issues. I have constant chronic pain but I am now in a gym type of setting for wheelchair users and they have taught us how to safely use the various pieces of equipment to try to build muscles and gain strength. It is in a university operated program so we work with students who keep us working out and they provide great encouragement and empathy.

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My gosh, I cannot believe you walk that far. I am lucky to get in 1/2 mile

@oregongirl

Mary. I have a terrible spine and neck. I have RA and only God knows how long before I cannot walk anymore. I force myself to walk my dog 4 times a day. I come home hurting so bad that I must lie down. They did shot a week ago and doctor "warned" me that if this did not help at all, he cannot do anymore shots. First time I had shots and I cannot believe he is giving up that easy. Doctors today.. I just don't know what to say anymore about them. After telling him HE IS GOING TO DO MY NECK again, I have an appt on Monday. The neck shots hurt terrible, but if it will work HELP ME. And of course, no pain pills. I would not even be able to tolerate the pain if I did not have the Hemp Lotion. I know I don't want to get addicted to heavy duty pain meds, but what else can we do? My spine doctor said he could fit me with a brace. Oh great wonder what that would be like? I fell about 6 months ago and have concrete in my Veritibra. Keep my spirits up and keep going.

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@oregongirl
We sound like we have some similar pain issues as I can only walk a bit in my home. You are wise to force yourself into walking your dog as it helps to keep you active so that is something to be proud about. I have degeneration in my neck from C5-C7 but I will hold off having that surgery as long as I can based on my previous experience with my failed fusion. Not really keen on more surgeries as I have had 14 surgeries already. I am a firm believer in mediation to help me to relax when the pain is too bad and I also watch my own “self talk” so that I don’t become too negative.

@marychapman

I also have had a failed fusion but my level is L5 S1. I had my surgery in 1994 and I had a good 12-15 years before my fusion failed. The worst area for my pain is my right sciatica nerve which was damaged during my fusion and my lower back. I do have arthritis throughout my body, spinal stenosis as well as major gastrointestinal issues. I have constant chronic pain but I am now in a gym type of setting for wheelchair users and they have taught us how to safely use the various pieces of equipment to try to build muscles and gain strength. It is in a university operated program so we work with students who keep us working out and they provide great encouragement and empathy.

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@marychapman
Hi!
You are welcome for the information.
When I first began with this neurosurgeon, we had a long discussion on how to help me with my C5/6.
He gave me 2 choices, fusion or replacement.
I really didn't know anything about either so we had a long discussion about both.
I knew when I got the replacement, that there was a chance that it would not work and I would need a fusion.
I also knew that if I had the fusion, I would need other fusions down the spine, in the future.
It's the nature of how fusions work.
My neurosurgeon suggested trying the replacement since failure is very minimum.
So glad I did. I am very blessed to have found this doctor.
Did learn something else that is news to me……
It is law in Florida that he cannot give me any pain meds without doing surgery.
And when pain meds are given, it is only for 1 week after surgery.
It always amazes me that things sway fully in one direction and then in the other.

Before giving up on any more surgeries (that is if you still want them), find another doc for another opinion.
New techniques are coming out all the time.

I understand you feelings about keeping up your mobility.
I've actually started using a scooter or wheelchair when we go out.
Only problem is I don't own one, so we only go to places that have them to rent or borrow.
I try to get into my pool each day and walk and do some leg exercises.
I can't do much so I really don't know if it helps.

Hope you have a great weekend!
Ronnie (GRANDMAr)

Hi All!
An update on my saga……
I am scheduled for surgery on Sept. 17th.
I am having a procedure called X-Lift for L3/4.
With this procedure, they go through your side in a 1 inch incision.
I am hoping this will help with my lower body pains and will be enough for me to work on getting my muscle strength back……as well as my life!

When I was at the neurosurgeon this week, he was reading the report from my Mylogram CT.
He said he didn't really go along with the report 100%/
He felt there was more going on.
So with a fine tooth comb he looked over the films himself.
He found a 'dot' in the spinal column.
He did not know if it was a tumor or cyst (can't remember the name of it).

I went for an MRI with contrast.
Guess what?
He was right, there was something and thank goodness it was not a tumor or cancer.
It is a certain kind of a cyst that I could have had since birth or from a previous fall.
They usually just watch it when it is that small, but even so, it can be the answer for many of the things that I have been experiencing.
Doc did not mention changing plans for my X-Lift so I assume we are going ahead with it.
I am, of course, not happy to have yet another surgery, but I am excited at the prospect of getting at least some of my quality of life back.

I am currently sitting in my chair, in my family room, because of pain.
I just took a pill which will take the edge off but not the pain.
In my room, is sleeping my precious 7 year old granddaughter who wanted a sleepover.
I haven't been feeling well so she has not been able to stay.
Felt good earlier, but now……………..

It is for her, my 2 other grands, my children and wonderful hubby that I fight so hard to find answers.
I am 63, retired and waiting to get this retirement hopping…………

Here's to a painful weekend for us all…..
Ronnie (GRANDMAr)

@grandmar

Hi All!
An update on my saga……
I am scheduled for surgery on Sept. 17th.
I am having a procedure called X-Lift for L3/4.
With this procedure, they go through your side in a 1 inch incision.
I am hoping this will help with my lower body pains and will be enough for me to work on getting my muscle strength back……as well as my life!

When I was at the neurosurgeon this week, he was reading the report from my Mylogram CT.
He said he didn't really go along with the report 100%/
He felt there was more going on.
So with a fine tooth comb he looked over the films himself.
He found a 'dot' in the spinal column.
He did not know if it was a tumor or cyst (can't remember the name of it).

I went for an MRI with contrast.
Guess what?
He was right, there was something and thank goodness it was not a tumor or cancer.
It is a certain kind of a cyst that I could have had since birth or from a previous fall.
They usually just watch it when it is that small, but even so, it can be the answer for many of the things that I have been experiencing.
Doc did not mention changing plans for my X-Lift so I assume we are going ahead with it.
I am, of course, not happy to have yet another surgery, but I am excited at the prospect of getting at least some of my quality of life back.

I am currently sitting in my chair, in my family room, because of pain.
I just took a pill which will take the edge off but not the pain.
In my room, is sleeping my precious 7 year old granddaughter who wanted a sleepover.
I haven't been feeling well so she has not been able to stay.
Felt good earlier, but now……………..

It is for her, my 2 other grands, my children and wonderful hubby that I fight so hard to find answers.
I am 63, retired and waiting to get this retirement hopping…………

Here's to a painful weekend for us all…..
Ronnie (GRANDMAr)

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@grandmar – What a good thing that Dr found the spot, and took the time with you. I will hold you in prayer until then and on surgery day, that you will get relief.

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