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.

Hello,
Thank you all for your posts. I'm hoping (praying) that my L5-S1 fusion hasn't failed.. I'm almost 12 years post fusion and have had minimal problems although not pain free. 4 weeks ago I started having an increase in pain directly over the fusion site, my hip feels like its locking up (for lack of a better way to describe), tingling down my leg and foot.. I've been icing daily.. Needless to say I'm scared to death. I have an appointment with my surgeon Dec 11th, 2018.

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@nonna4

Hello,
Thank you all for your posts. I'm hoping (praying) that my L5-S1 fusion hasn't failed.. I'm almost 12 years post fusion and have had minimal problems although not pain free. 4 weeks ago I started having an increase in pain directly over the fusion site, my hip feels like its locking up (for lack of a better way to describe), tingling down my leg and foot.. I've been icing daily.. Needless to say I'm scared to death. I have an appointment with my surgeon Dec 11th, 2018.

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@nona I hope you dont have to have anymore surgery but Im glad your going to Dr.maybe just some P. T. Will help I know for myself since I had a fractured back I still have pain and have to not overdue resting every afternoon. Water aerobics and back exercises have helped my back hopefully this will be the case for you Let me know how you are .

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Hello, I'm new to this site and have been browsing discussions. I have degenerative disc disease like many seniors. Unfortunately mine has been painful for 6 years at L5S1 disc. Over those years I have been to physical therapy twice which was a great help in understanding and improving core strength. I have always walked 2-3 miles a day and gone to exercise classes and yoga for past 3 years. Additionally have had steroid shots in back and tried opiods 3 years ago……not a fan. The degeneration is now severe as shown on recent MRI and so is the pain. Have had to give up so many pleasures in my life like gardening, cooking, entertaining, taking trips, long walks and now exercise class. Have avoided surgery as a last resort, the pain is now at the last resort stage. Lots of nerve pain including sciatica. Am going to back surgeon this week. Last year he said he could relieve 90% of pain with spinal fusion, and I'm finally ready. Has anyone else had spinal fusion in lumbar? Am very interested in your experience. Thank you.

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I had lumbar fusion from L3-S-1 in 2016. I also had cage with screws, and I had scoliosis. So it was big surgery. I will say tough surgery but helped me tremendously. I would strongly suggest you use Neurosurgeon because of nerves involved as well as Spine. I used Dr Chen at Mayo-Florida and was pleased with him. Dr Chen is very skilled and compassionate Neurosurgeon.
I still have issued but not the same. I will be glad to answer anything I can if it helps you prepare.

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@budbarb

I had lumbar fusion from L3-S-1 in 2016. I also had cage with screws, and I had scoliosis. So it was big surgery. I will say tough surgery but helped me tremendously. I would strongly suggest you use Neurosurgeon because of nerves involved as well as Spine. I used Dr Chen at Mayo-Florida and was pleased with him. Dr Chen is very skilled and compassionate Neurosurgeon.
I still have issued but not the same. I will be glad to answer anything I can if it helps you prepare.

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I am new to this site. This was my first post.

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@beckyann

Hello, I'm new to this site and have been browsing discussions. I have degenerative disc disease like many seniors. Unfortunately mine has been painful for 6 years at L5S1 disc. Over those years I have been to physical therapy twice which was a great help in understanding and improving core strength. I have always walked 2-3 miles a day and gone to exercise classes and yoga for past 3 years. Additionally have had steroid shots in back and tried opiods 3 years ago……not a fan. The degeneration is now severe as shown on recent MRI and so is the pain. Have had to give up so many pleasures in my life like gardening, cooking, entertaining, taking trips, long walks and now exercise class. Have avoided surgery as a last resort, the pain is now at the last resort stage. Lots of nerve pain including sciatica. Am going to back surgeon this week. Last year he said he could relieve 90% of pain with spinal fusion, and I'm finally ready. Has anyone else had spinal fusion in lumbar? Am very interested in your experience. Thank you.

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Hello @beckyann and @budbarb, welcome to Connect.

@beckyann, I moved your discussion and combined it with a new discussion titled, "Chronic pain and spinal fusion." I did this so that all of the members discussing their chronic back pain and spinal fusion experience would see your message and have a chance to respond. Also, so you could see all of the messages already posted on this subject. If you are replying by email, you can click on VIEW & REPLY in your email notification to be brought to the new location if your post and to see some of the other posts members have made.

@budbarb, here are a few other discussions you may want to check out on Connect in addition to this one:
– Scoliosis, introduce yourself, https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/
– Scoliosis and chronic back pain, https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/

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Welcome @beckyann and @budbarb

I feel your pain, or should I say I felt your pain.
For more than a decade I lived with chronic pain 24/7!
I had and still have issues up and down my spine and everywhere in-between.
For years I took shots, had radiofrequency ablation, went to the chiropractor, went for acupuncture and acupressure, cupping, PT on land and aquatic.
You name it, I did it!!
I went to 5 different pain doctors before I found one of my heroes (when I moved to Florida).
For almost 4 years, he was the FIRST and ONLY pain doc that was able to help me.
My shots lasted anywhere from 4 to 12 weeks!!
The the shots stopped working. 🙁
He tried other things but none worked.
That, my new friends, is when I decided that the only thing left was surgery.
I decided I wanted to use a neurosurgeon that specialized in spinal surgery (although there are other surgeons that also can perform this sort of surgery).
I did my research and found a doctor!!!
He decided that I should start with my cervical spine.
I had developed SEVERE headaches that woke me up each morning.
When I got out of bed, I would feel bettwe usually within a half-hour.
(I bought more pillows that you can imagine!).
I had 2 disks replaced, C5/C6.
The surgery was done through the front part of my neck (you can harldy see the scar).
The surgery was at the end of February 2018 and the recovery was easy and quick.
After completing PT, we decided that it was time for the lumbar surgery.
I had the surgery in August, about 6 months after the first one.
This time, I had what was called an X-LIFT FUSION of L3/L4.
The doctor did NOT prepare me for what the recovery would be like.
I assumed it would be similar to the cervical surgery.
Boy, was I WRONG!!!!!!!!!!!!!
I've had 2 children, several joint repairs, etc. and NOTHING prepared me for the pain I had with this.
When I told the surgeon he kind of said he didn't want me to back out.
It took me approx. 4 months to recover enough to start going out and to the stores.
I was worried about opiod addiction because of how long I took the pain meds, but the NP worked it out with me.
During the earlier part of my recovery, I'd cry to my hubby that I NEVER would have had the surgery if I knew what pain it would be.
But on the day I awoke and notices I was pain free, I rejoiced!
Needless to say, I am now HAPPY that I had the surgery.
For the first time in over a decade, I am pain free!!!
I wish, however, I could say that is the end of the story, but it isn't!!!
I still have stenosis in my lumbar, as well as arthritis, degenerative disease, severe and permanent nerve damage and proabaly vascular issues as well (working on that now).
I've developed neuropathy in my feet and no one seems to know why.
It started BEFORE the lumbar surgery.
I walk with a cane and just got a brace to help because my big toe drops and I trip over it.
I cannot drive since my reflexes are poort.
I have been given the option of another surgery to clean up a bunch of nerves that have bunched together near my L3/4, but the surgeon cannot guarantee that it might start the pain, again.
So, I am happy to be PAIN FREE and unless whatever is causing my issues will kill me or prevent me from living my life, I will do nothing.
And by the way, I PERSONALLY BELIEVE that waiting so long for the surgery is why I have so much damage!

Best of luck to the both of you!
Ronnie (GRANDMAr)

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i had a spinal fusion in my l4/l5 approximately 8 weeks ago. This was my 3rd back surgery, and most certainly the toughest one because it was much more involved. The first three weeks were the worst by far, but as time has passed, so has most of the pain. I still have to wear a brace which bothers my hips, but overall things seem to be going well. I am walking outside, coaching my son's soccer team, and able to run errands. I am careful with what I lift, gallon of milk max, and I rest alot. I still have a long road ahead of me, but I am happy I did it, my back was giving out regularly and something needed to be done. My best to you moving forward, stay strong, pain is a bummer and hopefully this fusion will give you relief.

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@salsa

i had a spinal fusion in my l4/l5 approximately 8 weeks ago. This was my 3rd back surgery, and most certainly the toughest one because it was much more involved. The first three weeks were the worst by far, but as time has passed, so has most of the pain. I still have to wear a brace which bothers my hips, but overall things seem to be going well. I am walking outside, coaching my son's soccer team, and able to run errands. I am careful with what I lift, gallon of milk max, and I rest alot. I still have a long road ahead of me, but I am happy I did it, my back was giving out regularly and something needed to be done. My best to you moving forward, stay strong, pain is a bummer and hopefully this fusion will give you relief.

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@salsa
Good Morning!
It sounds like you are doing very well!
Congrats!
It took me longer before I could get around, although, the pain was worse in the morning when I got up.
First thing was to get into my chair with a heating pad on my back and ice packs on my thigh and groin area.
You are wise to follow the instructions of the doctor.
Many people no longer have their old pain so they overdo.
I still watch myself VERY closely.
No lifting, deep bending, twisting, lifting more than a gallon and resting at the end of the day.
Keep up the good work!
PT for you, next, I assume!
Ronnie (GRANDMAr)

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@grandmar So hard to be careful. Still learning on that lifting thing!!

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@parus

@grandmar So hard to be careful. Still learning on that lifting thing!!

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Yes, it is. I don't know if it is a blessing or a curse, but I have a watch horse, my husband.
Ronnie

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Thank you all for your replies, very helpful. I live in a smaller community about 3 hours from nearest metropolitan area. We have only one orthopedic spine surgeon, no neurosurgeon. Our surgeon has a very good reputation, does a tremendous amount of spinal surgeries because we are a winter visitor haven. I live alone with no family so will spend a few days in hospital after surgery and then inpatient rehab for a few days, not sure yet how long. I am fine with this arrangement, I want to learn as much as possible from therapy experts on self care. I am actually looking forward to having the surgery and getting my life back. I do a lot of research, want to be as prepared as possible. I believe pain differs with individuals, I have a fairly low pain tolerance myself but that doesn't worry me as much as being able to care for myself and remain independent. I am a detail person, interested in type of spinal surgery done, there are a few types of spinal fusion surgery. I am praying mine will be minimally invasive from the back, but won't know until later this week. The less the surgeon has to move muscle and tissue around the better and shorter recovery. Also interested in self care tips during recovery, since I will be doing most of it alone. Will I be able to tie my athletic shoes, take trash out, sweep the patio, make the bed, wash clothes. How long will I be too weak to do things on my own? What assistive devices/equipment has been helpful?

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