1. < Spine Health

Chronic pain and spinal fusion

Posted by lynn12 @lynn12, Aug 16, 2018

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.

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Texas Freedom | @oregongirl | Aug 24, 2018
In reply to @marychapman "I also have had a failed fusion but my level is L5 S1. I had my..." + (show)
@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

REPLY
marychapman | @marychapman | Aug 24, 2018
In reply to @oregongirl "Mary. I have a terrible spine and neck. I have RA and only God knows how..." + (show)
@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.

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grandmaR | @grandmar | Aug 24, 2018
In reply to @marychapman "I also have had a failed fusion but my level is L5 S1. I had my..." + (show)
@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.

Jump to this post

@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)

REPLY
grandmaR | @grandmar | Aug 24, 2018

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)

REPLY
3 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 24, 2018
In reply to @grandmar "Hi All! An update on my saga...… I am scheduled for surgery on Sept. 17th. I..." + (show)
@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.

REPLY
1 reply
lynn12 | @lynn12 | Aug 25, 2018
In reply to @marychapman "I also have had a failed fusion but my level is L5 S1. I had my..." + (show)
@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.

Jump to this post

I walk at a very leisurely pace. I always take my little 7lb Yorkie with me, she poops out quickly so I have a stroller for her. The stroller actually helps me as I have something to hold on to that helps keep me upright for all those hours. I just feel like my whole midsection is sinking. Does anyone else have this problem. My fusion was T2 through L4.

REPLY
Texas Freedom | @oregongirl | Aug 25, 2018
In reply to @marychapman "I also have had a failed fusion but my level is L5 S1. I had my..." + (show)
@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.

Jump to this post

Lynn12...Yes I too have a 5 lb Yorkie. But no stroller. Some days I do well with the walk, but others can't wait to sit down. It is very hot here in Texas, so our walks are reduced due to heat.

REPLY
Texas Freedom | @oregongirl | Aug 25, 2018
In reply to @oregongirl "Mary. I have a terrible spine and neck. I have RA and only God knows how..." + (show)
@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.

Jump to this post

Mary..Oh my goodness. so many surgeries. If he suggests surgery to me, I will leave his office and go home. My shots that I got last week made my entire body hurt so bad. I could barely put my foot down on the ground to walk. The a day later no pain. It must be the medicine going into my body. My kids have finally talked me into moving into an INDEPENDENT living facility. Well, you know how that will go. Once I fall, they will require me to have ASSISTANCE. My daughter lives in Idaho so, that is where I would go. I love San Antonio and Oregon for over 11 years. Idaho does not excite me. She is in southern Idaho. Only nice thing is she is close to the Oregon border. I can cross the border go get some Marijuana and smoke it or use it and then drive back Actually, I don't smoke it, I use the oil. I have not had any since I left Oregon. It is by far MUCH BETTER than the pain drugs. You do not get HOOKED on the MJ. That is a lie the drug companies put out.

REPLY
grandmaR | @grandmar | Aug 25, 2018
In reply to @marychapman "I also have had a failed fusion but my level is L5 S1. I had my..." + (show)
@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.

Jump to this post

@lynn12
Hi Lynn!
It's a great idea to have the stroller to hang on to. I do the same when I go to stores. If it doesn't have a scooter, there has to be a shopping cart for me to hold on to.

I haven't had fusions, but what you are describing makes sense based on what I have been told about fusions.
When you are fused, the fused discs lay heavily on the discs below it. That is why another fusion is eventually needed. The discs basically collapse on one another.

Have a pain free day.....
Ronnie (GRANDMAr)

REPLY
grandmaR | @grandmar | Aug 25, 2018
In reply to @oregongirl "Mary. I have a terrible spine and neck. I have RA and only God knows how..." + (show)
@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.

Jump to this post

@oregongirl
Good Morning!
I am so sorry your shots hurt so much. That is actually a good thing because it means that the medication is going where is needed. When I used to get my shots, I could actually feel the steroids going down my legs and up my back. It is painful. The reason there is pain is because your nerve endings are inflamed and the medication is trying to calm it down.

If your shots work, I agree that surgery should not be a thought. I took shots for over 10 years. Some were better than others. Some pain docs were better than others. I went through 5 pain docs before I found one that actually helped me. It takes a knowledgeable doctor who can find the right spot and use the right meds to help. My last pain doc was FANTASTIC! However, after 4 years, the shots stopped working as PT has. Now it is surgery all the way.

Have a terrific weekend with as little pain as possible!
Ronnie (GRANDMAr)

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