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.

@grandmar

@tom2017
I had spinal fusionon my lumbar.
As far as what I had, I used a walker about 8 weeks then switched to a cane.
As far as pain, I had 4 months of pure hell.
All that being said, I would check with your surgeon.
Ronnie (GRANDMAr)

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Oh my goodness! I’m having fusion surgery this Wednesday on L-3 L-4 and L-4 to L-5. I have been having pain for about three years and I’m on Oxy. I’m able to walk(with my walker or cane) about 15 minutes before my legs give out. I am so concerned about the surgery and how long I’ll need to recover.
Being summer, my husband is looking forward to fishing, hiking, boating and tent camping. I’m think “Oh my…Lord help me!” I’m not sure how I’ll get through it. Almost cancelled several times. HELP

Liked by grandmaR

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@grandmar

Good advice,
I actually went home with a walker. I used it for the first couple of post-op visits then switched to a cane. I wore a back brace for a few months.
Yes, grippers are a great idea! Also have some ice packs and heading pads available. I don't want to scare you, but the first couple of months can be difficult.
As far as what you can and can't do, don't rush anything. As a matter of fact, do NOT do any of the things you know can reinjure your back. I believe that the reason some back surgeries are NOT successful is NOT because of the type of procedure or even the surgeon. I believe it is because people do too much, too soon.
I was told that even though the surgical area can look good, it can take a full year for a cervical surgery to be healed and 18-24 months for a lumbar to be completely healed.
I fell several months after my lumbar surgery.
I was 'healed' according to my f/u xrays.
Because of issues I am having, an MRI was taken.
Although I don't have pain, they can see that the spine moved at the fusion site.
Things are just so delicate and the older you are, the longer it takes.
I was 63 yo.
Ronnie (GRANDMAr)

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Thank you so much for the information you have shared. I am concerned about going up and down stairs. We have steps leading to our bedroom and bath. Thinking maybe we should put a bed and toilet down stairs. What is your experience? Thank you

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@salsa

Hi Beckyann, if you have a fusion, I would ask your doctor about your specific questions, taking trash out etc. I would say from my experience, do as little as possible so you can heal, at times I think I should be doing more, but then I realize I have metal rods in my back and a fake bone that are all trying to grow together to make me strong again. I realize that I must not push it, I would not overdue it at home after your surgery, your back will not be happy. I highly recommend buying some grippers to pick stuff up off the floor, they are lifesavers. A walker, or cane might help too, I used a walker for the first few weeks because it hurt a lot and I needed something to balance on. thats all i can think of for now, good luck to you.

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Such good advice. This group is really helping me come to terms with upcoming surgery. I have to say I’ve been feeling alone on this. Thank you

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@brendakaye

Oh my goodness! I’m having fusion surgery this Wednesday on L-3 L-4 and L-4 to L-5. I have been having pain for about three years and I’m on Oxy. I’m able to walk(with my walker or cane) about 15 minutes before my legs give out. I am so concerned about the surgery and how long I’ll need to recover.
Being summer, my husband is looking forward to fishing, hiking, boating and tent camping. I’m think “Oh my…Lord help me!” I’m not sure how I’ll get through it. Almost cancelled several times. HELP

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@brendakaye
Hi!
Take a deep breath and calm down.
March 2018, I had disc replacements on C5/6.
It was a quick recovery and my painful symptoms were gone within a week!!!!

I suffered from chronic pain 24/7 for over a decade.
The pain was horrible and there was a time I stopped walking for almost 3 years!
I couldn't bare the pain!!!

I started to see pain docs, but none could help me.
I reitred on disability for a few ailments.
I lived in New Jersey and could not take the cold!!!!
My hubby and I moved to the warmth of Florida.
I eventually found a FANTASTIC pain doc who was able to help me!
After 4 years, his magic stopped and I could no longer stand the pain which was now in my neck and causing horrible headaches.
In addition, I couldn't stand the lower pain, either.

It was then I decided to take my life back.
After lots and lots of research I found a neuro-surgeon.
He did my cervical surgery and then the lumbar.
About 7 months after my cervical surgery, I had my lumbar surgery.
I had L 3/4 done. I had an X-Lift Fusion.
Don't ask me what it is, I have no idea!

It's been about 9 months since the surgery and I am pain-free for the first time in a decade!
I am not going to lie to you, the lumbar surgery, FOR ME was horrible!!
The pain was terrible and the recovery worse!
It took me about 4 months, then one day the pain was gone; just like that!
I was pissed with my surgeon that he did not tell me about the pain.
But I now understand why he did the cervical first.

Each person recovers differently in a different amount of time.
I am, however, pretty sure that it will take at least a month or two to start to feel well.
Follow all the rules set by the surgeon and take this time to baby yourself!!!!!
No lifting, bending, twisting, sudden moves, hyper-extensions, or carrying anything heavy.
Even after all this time since my surgeries, I still follow those guidelines!!!
Many people feel better and go hog wild then complain the surgery did not work.

I used to cry and ask myself WHY did I do this to myself.
Now, I couldn't be happier I did it!!!!!!!!!!!!!!!!!!!!!!

Good luck!
Ronnie

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@brendakaye

Thank you so much for the information you have shared. I am concerned about going up and down stairs. We have steps leading to our bedroom and bath. Thinking maybe we should put a bed and toilet down stairs. What is your experience? Thank you

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I think that is a great idea! I actually slept in my recliner chair in the living room for about a week.
I then moved into a room that had a bed that was softer than mine and lower so that I could get in and out.
I live in a one level home.
Not to give TMI, but I would get spasms when I would sit to use the toilet, that my hubby would have to come get me off.
You will probably need a walker to get around and get you in and out of bed and on and off the toilet.
As far as the toilet, you might want to have the toilet paper ready before you sit down IF the holder is not right near you.
Showers feel great but you need to prepare for them, too.
If you have a free standing shower, that would be best.
If not, get help to step in and out of the tub.
Have grab bars available.
You do not have to get the permanent ones, they do make good ones that use suction.

Hope this helps and prepares you.
Ronnie

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@brendakaye I've had three back surgeries. My first one was for a herniated disc at L5-S1. The second surgery was for fusions in the same place you are getting them. They put in rods at that time. The third surgery, which was in 2013 was to put a cage in above L-3. These three surgeries were probably over a 10 year period and started when I was 54 or 55. I had never had any type of surgery prior to this and had been in great health all my life. I have degenerative disc disease so I continue to live with back pain. I was scheduled for a surgery to have my SI Joint screwed to my pelvic bone. After going in for the pre-op, I called the next day and cancelled the surgery. I've decided I won't have it done until I can no longer walk. I don't use a cane or walker and the only thing I take for pain in Advil. I can't walk more than one block without having back pain or stand for any long periods. But recovery from the first surgery was "a piece of cake"…. so much so that I didn't do what I was told and felt so good that I drove and went to a meeting just 10 days after surgery. I probably should not have and learned what not to do with my second and third back surgeries. Don't lift anything heavier than a gallon of milk for 6 weeks after surgery. Walking is the best thing you can do. I was able to go up steps after surgery. Just don't do any bending. I wore the back brace with my last surgery and I think it helped for the first month. But you also need to build up your muscle strength so I quit wearing the brace as soon as possible. The pain meds made me feel terrible so I quit taking them as soon as I could. I did have a muscle relaxer that helped with the spasms. Physical therapy is also key to your recovery. I started six weeks after surgery. Excuse my french…. but back pain is a bitch. That's the only way to explain it. I've lived with it for 15 years now and I still garden and attend our grandkids sporting events. I'm holding on to my husband when climbing the bleachers and have to take it easy, but I refuse to let it get the best of me. Think positive and listen to your doctors. Wishing you well and pain free in the days ahead.

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@grandmar

@brendakaye
Hi!
Take a deep breath and calm down.
March 2018, I had disc replacements on C5/6.
It was a quick recovery and my painful symptoms were gone within a week!!!!

I suffered from chronic pain 24/7 for over a decade.
The pain was horrible and there was a time I stopped walking for almost 3 years!
I couldn't bare the pain!!!

I started to see pain docs, but none could help me.
I reitred on disability for a few ailments.
I lived in New Jersey and could not take the cold!!!!
My hubby and I moved to the warmth of Florida.
I eventually found a FANTASTIC pain doc who was able to help me!
After 4 years, his magic stopped and I could no longer stand the pain which was now in my neck and causing horrible headaches.
In addition, I couldn't stand the lower pain, either.

It was then I decided to take my life back.
After lots and lots of research I found a neuro-surgeon.
He did my cervical surgery and then the lumbar.
About 7 months after my cervical surgery, I had my lumbar surgery.
I had L 3/4 done. I had an X-Lift Fusion.
Don't ask me what it is, I have no idea!

It's been about 9 months since the surgery and I am pain-free for the first time in a decade!
I am not going to lie to you, the lumbar surgery, FOR ME was horrible!!
The pain was terrible and the recovery worse!
It took me about 4 months, then one day the pain was gone; just like that!
I was pissed with my surgeon that he did not tell me about the pain.
But I now understand why he did the cervical first.

Each person recovers differently in a different amount of time.
I am, however, pretty sure that it will take at least a month or two to start to feel well.
Follow all the rules set by the surgeon and take this time to baby yourself!!!!!
No lifting, bending, twisting, sudden moves, hyper-extensions, or carrying anything heavy.
Even after all this time since my surgeries, I still follow those guidelines!!!
Many people feel better and go hog wild then complain the surgery did not work.

I used to cry and ask myself WHY did I do this to myself.
Now, I couldn't be happier I did it!!!!!!!!!!!!!!!!!!!!!!

Good luck!
Ronnie

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@grandmar Glad to hear from you and that its been 9 months since your X-Lift happy your out of pain now.

Liked by grandmaR, brendakaye

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@lioness

@grandmar Glad to hear from you and that its been 9 months since your X-Lift happy your out of pain now.

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@lioness
Thank you!
Yes, I couldn't be happier with the result from the surgery!!
It was a tough road, but worth it!
Ronnie

REPLY
@grandmar

@brendakaye
Hi!
Take a deep breath and calm down.
March 2018, I had disc replacements on C5/6.
It was a quick recovery and my painful symptoms were gone within a week!!!!

I suffered from chronic pain 24/7 for over a decade.
The pain was horrible and there was a time I stopped walking for almost 3 years!
I couldn't bare the pain!!!

I started to see pain docs, but none could help me.
I reitred on disability for a few ailments.
I lived in New Jersey and could not take the cold!!!!
My hubby and I moved to the warmth of Florida.
I eventually found a FANTASTIC pain doc who was able to help me!
After 4 years, his magic stopped and I could no longer stand the pain which was now in my neck and causing horrible headaches.
In addition, I couldn't stand the lower pain, either.

It was then I decided to take my life back.
After lots and lots of research I found a neuro-surgeon.
He did my cervical surgery and then the lumbar.
About 7 months after my cervical surgery, I had my lumbar surgery.
I had L 3/4 done. I had an X-Lift Fusion.
Don't ask me what it is, I have no idea!

It's been about 9 months since the surgery and I am pain-free for the first time in a decade!
I am not going to lie to you, the lumbar surgery, FOR ME was horrible!!
The pain was terrible and the recovery worse!
It took me about 4 months, then one day the pain was gone; just like that!
I was pissed with my surgeon that he did not tell me about the pain.
But I now understand why he did the cervical first.

Each person recovers differently in a different amount of time.
I am, however, pretty sure that it will take at least a month or two to start to feel well.
Follow all the rules set by the surgeon and take this time to baby yourself!!!!!
No lifting, bending, twisting, sudden moves, hyper-extensions, or carrying anything heavy.
Even after all this time since my surgeries, I still follow those guidelines!!!
Many people feel better and go hog wild then complain the surgery did not work.

I used to cry and ask myself WHY did I do this to myself.
Now, I couldn't be happier I did it!!!!!!!!!!!!!!!!!!!!!!

Good luck!
Ronnie

Jump to this post

Oh my goodness thank you so much for your input. I had the fusion done on L3-4 and 4-5. I have degenerated discs and spinal stenosis. Been in rehab 10 days now and going home tomorrow. Have to say the pain is excruciating at times. The pain meds help. I’m walking with a cane, inside, and a walker outside. Like you, my best advice is to take it slow. Listen to your doc and remember no BLT: bending lifting twisting. As I shared before, I’m diabetic and my bs #’s have gone through the roof, and bp dips. So I get tired real easy. As much pain as this has caused I’d do it again simply because the only other option was losing my ability to walk. Thanks again

Liked by trishanna, grandmaR

REPLY
@brendakaye

Oh my goodness thank you so much for your input. I had the fusion done on L3-4 and 4-5. I have degenerated discs and spinal stenosis. Been in rehab 10 days now and going home tomorrow. Have to say the pain is excruciating at times. The pain meds help. I’m walking with a cane, inside, and a walker outside. Like you, my best advice is to take it slow. Listen to your doc and remember no BLT: bending lifting twisting. As I shared before, I’m diabetic and my bs #’s have gone through the roof, and bp dips. So I get tired real easy. As much pain as this has caused I’d do it again simply because the only other option was losing my ability to walk. Thanks again

Jump to this post

@brendakaye
Hi!
I am so happy that you are doing so well.
I had an X-Lift Fusion (I don't know if this is different) on L3-4 in October.
It took me 4 months to re-cooperate!
It was the worst pain!!!!!!!!!!!!!!!!!!!!!!
However, now I am pain free for the first time in over a decade.
I, too, would do it all over again!

I am glad you reminded everyone about BLT!
So many people will go right back to doing everything the way they did before surgery and then complain that the surgery was not a success.
I MY experience (I also had C5-6 replaced 6 months earlier) that once you have any kind of spine surgery, you have to CONTINUE to follow BLT!!!!!
Once you have back surgery, it takes at least a year for it to completely heal and even then, it might not be as strong as it once was.

BTW…..I am sure you know that it is not unusual for your BS and BP to go haywire when you are in pain and taking all sorts of meds. I hope the rehab is taking all that into consideration when giving you your meds.

I wish you continued luck in your healing…..
Ronnie (GRANDMAr)

REPLY
@grandmar

@brendakaye
Hi!
I am so happy that you are doing so well.
I had an X-Lift Fusion (I don't know if this is different) on L3-4 in October.
It took me 4 months to re-cooperate!
It was the worst pain!!!!!!!!!!!!!!!!!!!!!!
However, now I am pain free for the first time in over a decade.
I, too, would do it all over again!

I am glad you reminded everyone about BLT!
So many people will go right back to doing everything the way they did before surgery and then complain that the surgery was not a success.
I MY experience (I also had C5-6 replaced 6 months earlier) that once you have any kind of spine surgery, you have to CONTINUE to follow BLT!!!!!
Once you have back surgery, it takes at least a year for it to completely heal and even then, it might not be as strong as it once was.

BTW…..I am sure you know that it is not unusual for your BS and BP to go haywire when you are in pain and taking all sorts of meds. I hope the rehab is taking all that into consideration when giving you your meds.

I wish you continued luck in your healing…..
Ronnie (GRANDMAr)

Jump to this post

Being home is sure nice but there are always challenges to overcome. I’ve set my goal to walk 15 minutes a day, with help from hubby and walker. I also have a list of exercises to do to build strength in my legs and back. I can do those with not too much pain. But the core exercises for around my middle are at the moment unbearable . My one advice is to take it easy and don’t get depressed when you have to step back. It’s all part of healing. And each day do Something that helps in healing process.

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@gingerw

@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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Hi Ginger. I see your post was 2018. Did you have more back surgery? My husband had sever scoliosis, huge hump in upper back. His last rod would protrude out his back looking like it would come through his skin any moment

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@brendakaye

Being home is sure nice but there are always challenges to overcome. I’ve set my goal to walk 15 minutes a day, with help from hubby and walker. I also have a list of exercises to do to build strength in my legs and back. I can do those with not too much pain. But the core exercises for around my middle are at the moment unbearable . My one advice is to take it easy and don’t get depressed when you have to step back. It’s all part of healing. And each day do Something that helps in healing process.

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I e week ago dr Jeremy Fogelson fused his entire spine except for c1. He looks amazing

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@clogue8

I e week ago dr Jeremy Fogelson fused his entire spine except for c1. He looks amazing

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@clogue8 Dr. Jeremy Fogelson is my surgeon too. It sounds like your husband had a big surgery. Blessings to him for a good recovery. I was very impressed with Dr. Fogelson and what he did for me. You might enjoy this story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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when i was young, the "dowager's hump" was quite common, and most people with it wore a scarf in summer and a fur or fox in the winter, with one end hanging down the front and the other down the back. for me, the look of my dowager's hump is not nearly as bad as the pain and uncertainty of surgery

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