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.

That's sounds so Horrible I am so sorry that you had to go through all that. I sure hope you're able to find help real soon. I also had two Different spinal fusion. I have a 3 level fusion in my neck and a 4 level fusion in my back. I had real good Success in my neck surgery. Wish I could say the same for my back I have had 7 back surgery's over all the Fusion was the last one. That was 8 years ago and now I'm dealing with Chronic pain and now I have RSD wish has Completely changed and ruin my life. I now have two Spinal stimulators and a morphine pump to help control the pain. It all Started with me exercising one afternoon riding my bicycle And someone decided to go get drunk and get behind the wheel of his car and thought it was ok to drive. I have had 43 surgery's yes 43 that's right. Life is hard enough without someone else making it harder. Thank you all for letting me share its 3:41am sleep is something that was Taken away from me when he decided to drive drunk. Not sure What is in stored for me for the rest of my life I understand that I have to change my life and Learn how to live it differently now and I'm trying to Except the fact that life as I'v known it will never be that way again but I'm trying I haven't given up but I sure do miss my old life that I worked so hard for. But I know God didn't bring me this far for nothing. Thanks again for Allowing me to share.

REPLY
@james2189

That's sounds so Horrible I am so sorry that you had to go through all that. I sure hope you're able to find help real soon. I also had two Different spinal fusion. I have a 3 level fusion in my neck and a 4 level fusion in my back. I had real good Success in my neck surgery. Wish I could say the same for my back I have had 7 back surgery's over all the Fusion was the last one. That was 8 years ago and now I'm dealing with Chronic pain and now I have RSD wish has Completely changed and ruin my life. I now have two Spinal stimulators and a morphine pump to help control the pain. It all Started with me exercising one afternoon riding my bicycle And someone decided to go get drunk and get behind the wheel of his car and thought it was ok to drive. I have had 43 surgery's yes 43 that's right. Life is hard enough without someone else making it harder. Thank you all for letting me share its 3:41am sleep is something that was Taken away from me when he decided to drive drunk. Not sure What is in stored for me for the rest of my life I understand that I have to change my life and Learn how to live it differently now and I'm trying to Except the fact that life as I'v known it will never be that way again but I'm trying I haven't given up but I sure do miss my old life that I worked so hard for. But I know God didn't bring me this far for nothing. Thanks again for Allowing me to share.

Jump to this post

@james2189
Thank you for sharing your story!!!
I am so sorry for all you have been through.
I cannot imagine having so many surgeries.
Drunk driving is a whole other topic that I am sure many members can relate to.

I did not have any accidents that required the 2 spinal surgeries.
A major reason for these problems come from aging (I am 63 yo), weight (I lost 80 lbs.) and I believe that all the years I worked out inappropriately.
Whatever the reason, it is what it is!!!
For years I went to pain doctors for help.
When they could no longer help, surgery was the next option.

I know that the surgeries (c5/6 and L 4/5) may not be the entire answer but it has to be better than what I was experiencing.
My pain doctor told me a long time ago, something that you mentioned.
Regardless if I have surgery (which I did), I still need to be careful and adjust my life accordingly.
I retired 5 years ago at the age of 48 on SSI.
My retirement is nothing like I expected.
My pain doc said the same thing you did, I have to get used to living a different life style.
I refuse to become a cripple and do whatever they suggest in order to get back to my old self.

One last thing, I promise.
No one knows what life will be like.
None of us have asked to live in pain or a restrictive life.
So, we have to make the best of things and work our butts off in order to get some quality of life.
Remember, we don't have any alternatives (except death) that are acceptable.

Have a pain free day and keep writing.
You are not venting, you are sharing.
There are people who will find something you said as that AH, HA moment.

Ronnie (GRANDMAr)

REPLY
@grandmar

@james2189
Thank you for sharing your story!!!
I am so sorry for all you have been through.
I cannot imagine having so many surgeries.
Drunk driving is a whole other topic that I am sure many members can relate to.

I did not have any accidents that required the 2 spinal surgeries.
A major reason for these problems come from aging (I am 63 yo), weight (I lost 80 lbs.) and I believe that all the years I worked out inappropriately.
Whatever the reason, it is what it is!!!
For years I went to pain doctors for help.
When they could no longer help, surgery was the next option.

I know that the surgeries (c5/6 and L 4/5) may not be the entire answer but it has to be better than what I was experiencing.
My pain doctor told me a long time ago, something that you mentioned.
Regardless if I have surgery (which I did), I still need to be careful and adjust my life accordingly.
I retired 5 years ago at the age of 48 on SSI.
My retirement is nothing like I expected.
My pain doc said the same thing you did, I have to get used to living a different life style.
I refuse to become a cripple and do whatever they suggest in order to get back to my old self.

One last thing, I promise.
No one knows what life will be like.
None of us have asked to live in pain or a restrictive life.
So, we have to make the best of things and work our butts off in order to get some quality of life.
Remember, we don't have any alternatives (except death) that are acceptable.

Have a pain free day and keep writing.
You are not venting, you are sharing.
There are people who will find something you said as that AH, HA moment.

Ronnie (GRANDMAr)

Jump to this post

Thank you so much for your reply wasn't sure if I would get one or not. I have tried this before on other site but it was full of people Complaining that they couldn't find a good pain clinic to give them more pills. I would be so happy if I didn't need any at all. It's good to be able to talk to other people who are going through the same thing as you are. It breaks my heart to here some of the stores. I will be 54 in March and had to go on SSI 6 years ago What a eye open that was for me as far as money I had a Really good job working for myself. Never once did I ever think about how much money I spent at the grocery store. All I can say is thank God for coupon lol .. I'm with you about not trying to live like a Cripple most people dont even know What kind of pain I'm in each day. Life goes on just need to fine a Purpose too much time on my hands. I hope your day is better then yesterday and you can fine a reason to smile. 🙂

REPLY
@james2189

That's sounds so Horrible I am so sorry that you had to go through all that. I sure hope you're able to find help real soon. I also had two Different spinal fusion. I have a 3 level fusion in my neck and a 4 level fusion in my back. I had real good Success in my neck surgery. Wish I could say the same for my back I have had 7 back surgery's over all the Fusion was the last one. That was 8 years ago and now I'm dealing with Chronic pain and now I have RSD wish has Completely changed and ruin my life. I now have two Spinal stimulators and a morphine pump to help control the pain. It all Started with me exercising one afternoon riding my bicycle And someone decided to go get drunk and get behind the wheel of his car and thought it was ok to drive. I have had 43 surgery's yes 43 that's right. Life is hard enough without someone else making it harder. Thank you all for letting me share its 3:41am sleep is something that was Taken away from me when he decided to drive drunk. Not sure What is in stored for me for the rest of my life I understand that I have to change my life and Learn how to live it differently now and I'm trying to Except the fact that life as I'v known it will never be that way again but I'm trying I haven't given up but I sure do miss my old life that I worked so hard for. But I know God didn't bring me this far for nothing. Thanks again for Allowing me to share.

Jump to this post

@james2189 Thank you for sharing. I am sure that you have made a difference in someone's life today. Wishing you a Wednesday as pain-free as possible,
Ginger

REPLY

Hi
I had a spinal fusion in 2006. I was fused from T2 through L4. I had suffered many years from pain due to scoliosis as well as the other many common spinal ailments, spondlyothedisis, degenerative disc disease , etc. My plan was never to do surgery, choosing instead to do epidurals at different times. A car accident changed everything,making my very complicated spine completely unstable, hence the surgery. The first surgery in 2006, took 12 hours and did not fuse. The entire thing had to be done again in 2007, this time the fusion took hold. Many years have passed and I am so disappointed, left with chronic pain and what looks like a dowagers hump as my surgeon said my problem went so high she had to slightly bend the rod at the top otherwise I might have tipped forward or backward. I hate looking at myself when walking by a store front, I look l8ke a turtle. Is there anything that can be done just at the top, where this hump is? I just hate it but am petrified to have all the hardware removed. My surgeon told me to remove the hardware would be another two days of surgery at about 12 hours each time, with no guarantee’s. Is it possible to just corrrect the top where that ugly hump is? Does it mean they would have to break my bone where the hump has grown over the rod? I am guessing this is probably the only way and that frightens me to death. I am also on Warfarin as I had aortic valve replacement in 2001 and have a mechanical valve. Due to valve I have to be on this blood thinner forever, which when having surgery has much more additional risks, either losing too much blood or cutting back on the blood thinner too much and risk having a blood clot. Why can’t something be easier for me? Any ideas or advice would be much appreciated.

REPLY
@lynn12

Hi
I had a spinal fusion in 2006. I was fused from T2 through L4. I had suffered many years from pain due to scoliosis as well as the other many common spinal ailments, spondlyothedisis, degenerative disc disease , etc. My plan was never to do surgery, choosing instead to do epidurals at different times. A car accident changed everything,making my very complicated spine completely unstable, hence the surgery. The first surgery in 2006, took 12 hours and did not fuse. The entire thing had to be done again in 2007, this time the fusion took hold. Many years have passed and I am so disappointed, left with chronic pain and what looks like a dowagers hump as my surgeon said my problem went so high she had to slightly bend the rod at the top otherwise I might have tipped forward or backward. I hate looking at myself when walking by a store front, I look l8ke a turtle. Is there anything that can be done just at the top, where this hump is? I just hate it but am petrified to have all the hardware removed. My surgeon told me to remove the hardware would be another two days of surgery at about 12 hours each time, with no guarantee’s. Is it possible to just corrrect the top where that ugly hump is? Does it mean they would have to break my bone where the hump has grown over the rod? I am guessing this is probably the only way and that frightens me to death. I am also on Warfarin as I had aortic valve replacement in 2001 and have a mechanical valve. Due to valve I have to be on this blood thinner forever, which when having surgery has much more additional risks, either losing too much blood or cutting back on the blood thinner too much and risk having a blood clot. Why can’t something be easier for me? Any ideas or advice would be much appreciated.

Jump to this post

@lynn12 Im sorry you have all this but you are right to fear this surgery I dont have any answers for you but will lift you up in prayer

REPLY
@lynn12

Hi
I had a spinal fusion in 2006. I was fused from T2 through L4. I had suffered many years from pain due to scoliosis as well as the other many common spinal ailments, spondlyothedisis, degenerative disc disease , etc. My plan was never to do surgery, choosing instead to do epidurals at different times. A car accident changed everything,making my very complicated spine completely unstable, hence the surgery. The first surgery in 2006, took 12 hours and did not fuse. The entire thing had to be done again in 2007, this time the fusion took hold. Many years have passed and I am so disappointed, left with chronic pain and what looks like a dowagers hump as my surgeon said my problem went so high she had to slightly bend the rod at the top otherwise I might have tipped forward or backward. I hate looking at myself when walking by a store front, I look l8ke a turtle. Is there anything that can be done just at the top, where this hump is? I just hate it but am petrified to have all the hardware removed. My surgeon told me to remove the hardware would be another two days of surgery at about 12 hours each time, with no guarantee’s. Is it possible to just corrrect the top where that ugly hump is? Does it mean they would have to break my bone where the hump has grown over the rod? I am guessing this is probably the only way and that frightens me to death. I am also on Warfarin as I had aortic valve replacement in 2001 and have a mechanical valve. Due to valve I have to be on this blood thinner forever, which when having surgery has much more additional risks, either losing too much blood or cutting back on the blood thinner too much and risk having a blood clot. Why can’t something be easier for me? Any ideas or advice would be much appreciated.

Jump to this post

Hi @lynn12, welcome back to Connect. I moved your message to the discussion you started in a little while back so that you could easily get back in touch with you the members you connected with, who share experiences with chronic pain. It is understandable that you're not welcoming the thought of corrective surgery. You ask great questions however to help your decision making.

Did you ask your surgeon about what the 2 day, 12 hour each, surgeries would involve? She or he would be the only person who could knowledgeably tell you if by removing the hardware that they hump would be reduced or eliminated, and if so, how. I encourage you to contact your surgeon to ask these questions.
Lynn, would the goal of this surgery also be to reduce the pain?

REPLY
@mamacita

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

Jump to this post

@mamacita

Good Morning!

I was just reading your post from August 16th.
I found many of the things you are going through is similar to me.
I also had 2 back surgeries; one surgery the end February 2018 on my cervical spine, and another surgery 3 weeks ago on my lumbar spine.
It can take a full year to be sully healed so I have a ways to go.
My cervical just 3 weeks ago.
The first one, in my cervical spine (removed bad discs and replaced with artificial ones.
The cervical surgery was easy compaed to my lumbar which has been HORRIBLE!
I feel like I live in a drug related head.
I want to get off Effexor, but will probably wait until the holidays are over.
Monday will be the beginning of the 4th week of recovery.
I definately see improvement but I am still in quite a bit of pain and I need assistive walking device.
On the plus side, I am now able to fall asleep and remain asleep.
I am using my cane more often that the walker.
Except for the early morning, I am to move around with only my walker. I no longer need by hubby to hold me from the rear.
I've cut my meds way down, including the dreaded opiods……..like relearning to walk without assistive walking device.
I am trying to cut down the opiods for fear of becoming addicited.
I seem to be getting down the opiods.
I was taking 2 tabs and 5 mg.wcwey 4-6 hours.
It was moved to 10 mg.
Now, I am taking the opiods 2-3 times a day.
I now take 1 I1g) when I get up and when I go to sleep. If I have pain that wakes me up during the night, is all I take.
After reading about Effexor withdrawal, I believe I am going through some of the symptoms.

Well, good luck!!!
Have a terrific weekend!
Ronnie (GRANDMAr)

REPLY

Hello @grandmar

I just noticed your post (directed to @mamacita) however, I wanted to drop in to your conversation and let you know how pleased I am that you are one month into recovery and noticing some improvements. I'm sure it will take some more time, but I'm glad that you are seeing some good bench-marks in your pain and recovery. Will you keep in touch and post again?

REPLY

@hopeful33250
Good Morning Teresa!
Thank you for dropping in!
I am happy to post messages.
Have a great day!
Ronnie (GRANDMAr)

REPLY
@grandmar

@hopeful33250
Good Morning Teresa!
Thank you for dropping in!
I am happy to post messages.
Have a great day!
Ronnie (GRANDMAr)

Jump to this post

@grandmar

You have been on my mind for 3 days, and this is the first time I've been able to ask how you are doing from your lumbar surgery. I see that some things are physically better, which is wonderful. However you are still having lots of pain. I'm so sorry about the pain, and again encourage you to take the amounts of medication prescribed by your surgeon. You will need to go through withdrawal anyway in the future, so you may as well be as comfortable as possible now. I'm sure you will do well after everything is healed because you have such a great attitude! I'm wishing you well and holding you in my thoughts as pain free.

REPLY
@janice0809

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.

Jump to this post

@janice0809 how are you feeling, I hope you’ve managed to stay afloat but remember chronic pain can really tough so I hope you’re being kind to yourself especially on those tough days.

REPLY
Please sign in or register to post a reply.