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.

@lioness

@hopeful33250 your welcome all your uplifting words and concerns for us all are helpful.Thanks Linda

Jump to this post

I so admire all of you who deal with pain so courageously, @lioness.

REPLY
@hopeful33250

I so admire all of you who deal with pain so courageously, @lioness.

Jump to this post

@theresa. We are all warriors so have to be .

REPLY
@lioness

GrandmaR went to Dr today. Gailb saw a nurse practitioner Theresa I told him I wanted to avoid surgery if possible as we talked he agreed with what Im doing is good except he is sending me to Aqua Therapy 2times a week plus I do chair exercises 2times a week also Thanks guys for your concern I still have pain but he didn't think it was bad enough for surgery I would have had it if he felt it would be helpful. Oh well such is life

Jump to this post

@lioness
Thank you for the update.
I am glad you have a plan!
I pray it helps!!!
Ronnie (GRANDMAr)

REPLY
@grandmar

@lioness
Thank you for the update.
I am glad you have a plan!
I pray it helps!!!
Ronnie (GRANDMAr)

Jump to this post

@grandmar I hope so if not I,ll go back to him ,nice guy was a media c in Vietnam war

REPLY

I heard from my neurosurgeon my lumbar MRI has changed. I need a fusion at L-4 L-5, please share with me, your experiences. Thank you!

REPLY
@user_chf56161a

I heard from my neurosurgeon my lumbar MRI has changed. I need a fusion at L-4 L-5, please share with me, your experiences. Thank you!

Jump to this post

@user_chf56161a, you may notice I moved your discussion and combined it with an existing discussion titled "Chronic pain and spinal fusion." I did this so your post would be seen by many of the members already discussion spinal fusions and so that you could read some of their experiences and they can share more with you.

@user_chf56161a, if you are comfortable sharing, how soon are you needing your procedure?

REPLY

I am exactly 6 weeks today post surgery of a 6 level fusion L1-S1. It is the 2nd fusion I had the first one being 23 years ago when they fused L4-S1. The first injury which lead to the fusion left me with severe nerve damage, it's weird though because 23 years of chronic back pain is a long time but it certainly doesn't feel that long. Over 23 years I had 3 dorsal column pain stimulators implanted to help with pain, which provided good relief however come with their own set of complications which would be the reason I had them removed this year, I worked full time for 20 of that 23 of those years in chronic pain, unfortunately 3 years ago I had to give up full time work and not long afterwards had to give up part time, after a fall which knocked me unconscious and identified an acquired Chiari Malformation. For me this meant the bottom part of the brain, the cerebellar tonsils herniated through the foraman Magnum into the spinal canal 17mm interrupting Cerebral Spinal Fluid Flow to and from the brain/spinal canal, significantly compressing my brain stem and medulla. Although asymptomatic initially (apart from severe concussion), 18 mths later symptoms were so bad I couldn't walk unaided, hold my head up supported, smile, laugh or cry from the severe headaches this caused, swallow without chocking, the list goes on and is the reason behind why I had to give up work completely. I traveled to the other side of Australia to have brain surgery to reduce and hopefully stop any further long term damage by the herniation and compression of my brainstem and consequently my spinal cord. The surgery performed was Posteria Fossa Decompression, a laminectomy, cauterization of the cerebral tonsils and patch grafted from my own dural to prevent the brain from slumping further. That was Oct 2017. In terms of the decompression surgery I was recovering reasonably well and many symptoms were reduced however my spine felt like a concertina that was going to collapse. I was unable to have an MRI due to my pain stimulator however after losing bowel and bladder control 8 weeks ago my Neurosurgeon made the call that the devices and leads had to come out so they could get the necessary scans to find the cause of the the spinal problems and bowel/bladder control. They discovered severe spinal instability and degeneration from previous undiagnosed Juvenile Disc Disorder. The old fusion was taken apart,then a laminectomy, discectomy, bone removal and grafts, finishing with rods and titanium screws to stablise the spine from S1-L1. Recovery has been tough and pain severe. I have a number of pain medications that I take daily. Thankfully I discovered meditation a number of years back which helps enormously and a positive attitude is absolutely essential. Don't get me wrong I have my days, I've been through severe depression and thankfully came out the other side of some very dark times. The pain is enough sometimes to drive anyone spare but overall I maintain that a positive attitude has more benefits than any drug could ever offer. I feel there's so much I need to share with people in the hope that it makes their experience dealing with similar conditions and circumstances easier. Its hard to know where to start so sometimes rather than overthinking it you just have to start somewhere in the hope things evolve from there and I find an effective way of helping people, however that may be.

REPLY
@lioness

GrandmaR went to Dr today. Gailb saw a nurse practitioner Theresa I told him I wanted to avoid surgery if possible as we talked he agreed with what Im doing is good except he is sending me to Aqua Therapy 2times a week plus I do chair exercises 2times a week also Thanks guys for your concern I still have pain but he didn't think it was bad enough for surgery I would have had it if he felt it would be helpful. Oh well such is life

Jump to this post

@lioness

Thanks for your update Linda. I'm so glad you don't need surgery. You have been taking good care of yourself and I'm sure that has helped you avoid surgery. Hugs from me to you.

Liked by lioness

REPLY
@sallymagint

I am exactly 6 weeks today post surgery of a 6 level fusion L1-S1. It is the 2nd fusion I had the first one being 23 years ago when they fused L4-S1. The first injury which lead to the fusion left me with severe nerve damage, it's weird though because 23 years of chronic back pain is a long time but it certainly doesn't feel that long. Over 23 years I had 3 dorsal column pain stimulators implanted to help with pain, which provided good relief however come with their own set of complications which would be the reason I had them removed this year, I worked full time for 20 of that 23 of those years in chronic pain, unfortunately 3 years ago I had to give up full time work and not long afterwards had to give up part time, after a fall which knocked me unconscious and identified an acquired Chiari Malformation. For me this meant the bottom part of the brain, the cerebellar tonsils herniated through the foraman Magnum into the spinal canal 17mm interrupting Cerebral Spinal Fluid Flow to and from the brain/spinal canal, significantly compressing my brain stem and medulla. Although asymptomatic initially (apart from severe concussion), 18 mths later symptoms were so bad I couldn't walk unaided, hold my head up supported, smile, laugh or cry from the severe headaches this caused, swallow without chocking, the list goes on and is the reason behind why I had to give up work completely. I traveled to the other side of Australia to have brain surgery to reduce and hopefully stop any further long term damage by the herniation and compression of my brainstem and consequently my spinal cord. The surgery performed was Posteria Fossa Decompression, a laminectomy, cauterization of the cerebral tonsils and patch grafted from my own dural to prevent the brain from slumping further. That was Oct 2017. In terms of the decompression surgery I was recovering reasonably well and many symptoms were reduced however my spine felt like a concertina that was going to collapse. I was unable to have an MRI due to my pain stimulator however after losing bowel and bladder control 8 weeks ago my Neurosurgeon made the call that the devices and leads had to come out so they could get the necessary scans to find the cause of the the spinal problems and bowel/bladder control. They discovered severe spinal instability and degeneration from previous undiagnosed Juvenile Disc Disorder. The old fusion was taken apart,then a laminectomy, discectomy, bone removal and grafts, finishing with rods and titanium screws to stablise the spine from S1-L1. Recovery has been tough and pain severe. I have a number of pain medications that I take daily. Thankfully I discovered meditation a number of years back which helps enormously and a positive attitude is absolutely essential. Don't get me wrong I have my days, I've been through severe depression and thankfully came out the other side of some very dark times. The pain is enough sometimes to drive anyone spare but overall I maintain that a positive attitude has more benefits than any drug could ever offer. I feel there's so much I need to share with people in the hope that it makes their experience dealing with similar conditions and circumstances easier. Its hard to know where to start so sometimes rather than overthinking it you just have to start somewhere in the hope things evolve from there and I find an effective way of helping people, however that may be.

Jump to this post

@sallymagint I appreciate the details of your experience and knowledge. You might also be interested in taking part in the discussion group:
– Chiari Malformation type 1 https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/

REPLY
@gailb

@lioness

Thanks for your update Linda. I'm so glad you don't need surgery. You have been taking good care of yourself and I'm sure that has helped you avoid surgery. Hugs from me to you.

Jump to this post

Gailb thanks Gail hugs to you too .

REPLY
@sallymagint

I am exactly 6 weeks today post surgery of a 6 level fusion L1-S1. It is the 2nd fusion I had the first one being 23 years ago when they fused L4-S1. The first injury which lead to the fusion left me with severe nerve damage, it's weird though because 23 years of chronic back pain is a long time but it certainly doesn't feel that long. Over 23 years I had 3 dorsal column pain stimulators implanted to help with pain, which provided good relief however come with their own set of complications which would be the reason I had them removed this year, I worked full time for 20 of that 23 of those years in chronic pain, unfortunately 3 years ago I had to give up full time work and not long afterwards had to give up part time, after a fall which knocked me unconscious and identified an acquired Chiari Malformation. For me this meant the bottom part of the brain, the cerebellar tonsils herniated through the foraman Magnum into the spinal canal 17mm interrupting Cerebral Spinal Fluid Flow to and from the brain/spinal canal, significantly compressing my brain stem and medulla. Although asymptomatic initially (apart from severe concussion), 18 mths later symptoms were so bad I couldn't walk unaided, hold my head up supported, smile, laugh or cry from the severe headaches this caused, swallow without chocking, the list goes on and is the reason behind why I had to give up work completely. I traveled to the other side of Australia to have brain surgery to reduce and hopefully stop any further long term damage by the herniation and compression of my brainstem and consequently my spinal cord. The surgery performed was Posteria Fossa Decompression, a laminectomy, cauterization of the cerebral tonsils and patch grafted from my own dural to prevent the brain from slumping further. That was Oct 2017. In terms of the decompression surgery I was recovering reasonably well and many symptoms were reduced however my spine felt like a concertina that was going to collapse. I was unable to have an MRI due to my pain stimulator however after losing bowel and bladder control 8 weeks ago my Neurosurgeon made the call that the devices and leads had to come out so they could get the necessary scans to find the cause of the the spinal problems and bowel/bladder control. They discovered severe spinal instability and degeneration from previous undiagnosed Juvenile Disc Disorder. The old fusion was taken apart,then a laminectomy, discectomy, bone removal and grafts, finishing with rods and titanium screws to stablise the spine from S1-L1. Recovery has been tough and pain severe. I have a number of pain medications that I take daily. Thankfully I discovered meditation a number of years back which helps enormously and a positive attitude is absolutely essential. Don't get me wrong I have my days, I've been through severe depression and thankfully came out the other side of some very dark times. The pain is enough sometimes to drive anyone spare but overall I maintain that a positive attitude has more benefits than any drug could ever offer. I feel there's so much I need to share with people in the hope that it makes their experience dealing with similar conditions and circumstances easier. Its hard to know where to start so sometimes rather than overthinking it you just have to start somewhere in the hope things evolve from there and I find an effective way of helping people, however that may be.

Jump to this post

Your experience helped me feel better about my chronic pain. I am 9 months post scoliosis correction and 6 spinal fusions. I am trying hard not to call into depression due to constant pain.

REPLY

Good Morning,
Just thought I would fill you in on my progress since my fusion surgeon 2 1/2 weeks ago.
I had my first post-op x-ray of my L3/4 fusion.
I am healing very well.
I will take another x-ray before my next appointment in 4 weeks.

As far as my abilities.
I still need to walk with assistance because of the pain, I am not steady on my feet.
As per my doctor's instructions, I walk (with the walker) at least 3 times a day, 15-20 minutes each walk.
When I am not 'exercising', I use the cane.
I still can't bend, reach, stretch or twist.
I also can't go into my swimming pool.
I'm still on pain medication so I can't drive.

As far as pain is concerned:
I am still in bad pain.
I take my pain pill regularly throughout the day (every 5 hrs.).
The morning, getting our of bed, is a BIG issue.
The pain is horrible!!
I need my husband with me for fear that I will get a spasm and fall.
Throughout the day, the pain and spasms subside.
I cannot sleep in my bed because the mattress is too firm.
Luckily, I have a softer mattress in my guest room, that is
perfect……
How was it in the 3 BEARS? 1 was too soft, 1 was too hard, but 1 was just right! 🙂
The pain goes from my lower back and down my legs.
This is surgical pain and nerve inflamation.
Thankfully, I feel a big difference in my right leg.
I go back to the doctor in 4 weeks.
Hopefully, I won't need assistive devices to walk, I'll be off pain med. so I can drive and do all the things I can't do now.
Was this surgery worth it?
Depending on when I am asked that question, depends on my answer.
Truth is, I really had no choice.
If I continued on the road I was on, I probably would have wound up in a wheelchair and in constant pain. I had not alternatives left.
I am hoping this surgery will be the answer to my chroic pain.
The pain, along with the spasms, I very painful!
Deciding to have this surgery is something not to be taken lightly.
I would make sure I've exhausted every option, including thinking out of the box.
I know that over time, I will feel better.
My only worry now is to make sure I don't become dependent on the pain med.
My doc is overseeing that I don't.
Hopefully, by next week, I'll be able to take my pain med less frequently and even more less frequently the following week, etc.
Thanks for letting me share!
If you are thinking of having fusion surgery or you already had it and you have questions, don't hesitate to ask.

Have a pain-free day……
Ronnie (GRANDMAr)

REPLY
@grandmar

Good Morning,
Just thought I would fill you in on my progress since my fusion surgeon 2 1/2 weeks ago.
I had my first post-op x-ray of my L3/4 fusion.
I am healing very well.
I will take another x-ray before my next appointment in 4 weeks.

As far as my abilities.
I still need to walk with assistance because of the pain, I am not steady on my feet.
As per my doctor's instructions, I walk (with the walker) at least 3 times a day, 15-20 minutes each walk.
When I am not 'exercising', I use the cane.
I still can't bend, reach, stretch or twist.
I also can't go into my swimming pool.
I'm still on pain medication so I can't drive.

As far as pain is concerned:
I am still in bad pain.
I take my pain pill regularly throughout the day (every 5 hrs.).
The morning, getting our of bed, is a BIG issue.
The pain is horrible!!
I need my husband with me for fear that I will get a spasm and fall.
Throughout the day, the pain and spasms subside.
I cannot sleep in my bed because the mattress is too firm.
Luckily, I have a softer mattress in my guest room, that is
perfect……
How was it in the 3 BEARS? 1 was too soft, 1 was too hard, but 1 was just right! 🙂
The pain goes from my lower back and down my legs.
This is surgical pain and nerve inflamation.
Thankfully, I feel a big difference in my right leg.
I go back to the doctor in 4 weeks.
Hopefully, I won't need assistive devices to walk, I'll be off pain med. so I can drive and do all the things I can't do now.
Was this surgery worth it?
Depending on when I am asked that question, depends on my answer.
Truth is, I really had no choice.
If I continued on the road I was on, I probably would have wound up in a wheelchair and in constant pain. I had not alternatives left.
I am hoping this surgery will be the answer to my chroic pain.
The pain, along with the spasms, I very painful!
Deciding to have this surgery is something not to be taken lightly.
I would make sure I've exhausted every option, including thinking out of the box.
I know that over time, I will feel better.
My only worry now is to make sure I don't become dependent on the pain med.
My doc is overseeing that I don't.
Hopefully, by next week, I'll be able to take my pain med less frequently and even more less frequently the following week, etc.
Thanks for letting me share!
If you are thinking of having fusion surgery or you already had it and you have questions, don't hesitate to ask.

Have a pain-free day……
Ronnie (GRANDMAr)

Jump to this post

God bless you real good! I’d like to say I can’t imagine – but actually I can – two friends of mine have had fusions. One stayed at home afterwards, but the other opted to go into a nursing home because she didn’t want her hubby having to do “personal” care. I want to tell you that both women are success stories for their fusions. They had them done in Hartford, Ct. . I have needed one for years (I’m 69)but can’t because of other disease processes and low weight. Don’t worry about pain meds. If you need them – take them. Thank you for your honest posting of this. I wish you all the best. I believe in “the big picture” you will be happy you had the fusion. I will pray for your continued healing.

REPLY
@irene5

God bless you real good! I’d like to say I can’t imagine – but actually I can – two friends of mine have had fusions. One stayed at home afterwards, but the other opted to go into a nursing home because she didn’t want her hubby having to do “personal” care. I want to tell you that both women are success stories for their fusions. They had them done in Hartford, Ct. . I have needed one for years (I’m 69)but can’t because of other disease processes and low weight. Don’t worry about pain meds. If you need them – take them. Thank you for your honest posting of this. I wish you all the best. I believe in “the big picture” you will be happy you had the fusion. I will pray for your continued healing.

Jump to this post

@irene5
Thank you for your kind words and thoughts.
I've needed it for some time, too.
However, I was not mentally ready to do anything.
When I moved to Central Florida, from Southern New Jersey, I actually found a pain doctor who was able to help me manage my pain with injections.
When in NJ, I saw 5 different pain docs with NO success.
In addition, I went for accupuncture, chiropractics, PT,and method called cupping.
Not 1 gave me relief
Once I know we were moving, surgery was certainly not on my list of things to do.
I am glad I waited because I found a FANTASTIC pain doc who got me comfortable for 4-12 weeks with injections.
Sadly, the last 2 injections he gave me, no longer worked.
It was at this time I realized surgery was the next step.
I am very lucky to have the hubby I have.
There was NO question in his mind that he would be the one to care for me!
And he has. He does a FANTASTIC job!!!!!!!!!
I didn't take my pills at the beginning, on a regular basis, but after talking with the neurogurgical nurse practitioner and the doctor, I need not worry.
My doctor helped me to develp the basis for a pill taking surgery that I can modify to meet my needs.
I've already changed the schedule.
As soon as my pain is no longer constant, I will start to wean off the pain pill.
I am no longer worried about that.

Anyway, I am so sorry you have pain and you are unable to have the surgery.
For me, in my opinion, it is sooo painful and unless you are able to tolerate the pain pill, accept the help you need and have to time to recouperate, surgery is not the answer.

Good luck to you!
Hope you have a pain free day!
Ronnie (GRANDMAr)

REPLY
@grandmar

Good Morning,
Just thought I would fill you in on my progress since my fusion surgeon 2 1/2 weeks ago.
I had my first post-op x-ray of my L3/4 fusion.
I am healing very well.
I will take another x-ray before my next appointment in 4 weeks.

As far as my abilities.
I still need to walk with assistance because of the pain, I am not steady on my feet.
As per my doctor's instructions, I walk (with the walker) at least 3 times a day, 15-20 minutes each walk.
When I am not 'exercising', I use the cane.
I still can't bend, reach, stretch or twist.
I also can't go into my swimming pool.
I'm still on pain medication so I can't drive.

As far as pain is concerned:
I am still in bad pain.
I take my pain pill regularly throughout the day (every 5 hrs.).
The morning, getting our of bed, is a BIG issue.
The pain is horrible!!
I need my husband with me for fear that I will get a spasm and fall.
Throughout the day, the pain and spasms subside.
I cannot sleep in my bed because the mattress is too firm.
Luckily, I have a softer mattress in my guest room, that is
perfect……
How was it in the 3 BEARS? 1 was too soft, 1 was too hard, but 1 was just right! 🙂
The pain goes from my lower back and down my legs.
This is surgical pain and nerve inflamation.
Thankfully, I feel a big difference in my right leg.
I go back to the doctor in 4 weeks.
Hopefully, I won't need assistive devices to walk, I'll be off pain med. so I can drive and do all the things I can't do now.
Was this surgery worth it?
Depending on when I am asked that question, depends on my answer.
Truth is, I really had no choice.
If I continued on the road I was on, I probably would have wound up in a wheelchair and in constant pain. I had not alternatives left.
I am hoping this surgery will be the answer to my chroic pain.
The pain, along with the spasms, I very painful!
Deciding to have this surgery is something not to be taken lightly.
I would make sure I've exhausted every option, including thinking out of the box.
I know that over time, I will feel better.
My only worry now is to make sure I don't become dependent on the pain med.
My doc is overseeing that I don't.
Hopefully, by next week, I'll be able to take my pain med less frequently and even more less frequently the following week, etc.
Thanks for letting me share!
If you are thinking of having fusion surgery or you already had it and you have questions, don't hesitate to ask.

Have a pain-free day……
Ronnie (GRANDMAr)

Jump to this post

@grandmar Ronnie you are a trooper physical problems are tough but you have a great sense of humor the 3bears .funny dont lose that I love it I have some suggestions that help me Im probably repeating ,forgive me For inflammation which causes pain either ice it or buy ginger-Tumeric tea ,Trader Joe's, for the nerves My painaway from Topricin ,CVS these both work for me just suggesting.Glad your doing so well.hugs .Linda

REPLY
Please login or register to post a reply.