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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@lioness
Hi!
Thanks for the positive wishes!
When my shots stopped working, I knew it was time to take drastic steps like surgery.
I did my research and found this neurosurgeon.
He did my surgery at the end of February and will do my surgery next month.
I am blessed to have found him!!!
I hope this IS the answer!

Enjoy your weekend!
Ronnie (GRANDMAr)

REPLY
@grandmar

@lioness
Hi!
Thanks for the positive wishes!
When my shots stopped working, I knew it was time to take drastic steps like surgery.
I did my research and found this neurosurgeon.
He did my surgery at the end of February and will do my surgery next month.
I am blessed to have found him!!!
I hope this IS the answer!

Enjoy your weekend!
Ronnie (GRANDMAr)

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@grandmar let me know how it goes you have a good weekend

REPLY

Greetings fellow chronic pain people. My chronic pain issues really started in 1975 with a football injury to the c-spine. Managed to cope for years until 1997 when I developed pain and weakness in my left arm. Long story short is that my 1975 injury was misdiagnosed and I had in fact broken my neck back then. Starting in 1997, I had a fusion c5-c7. 1999 ruptured disc C4-C5. and another fusion surgery. In this time period started having the most painful headaches I can describe. 2001, it was discovered the 1st fusion had failed and disc ruptured C-7-T1. Two extensive C-spine surgeries in 2001. Very lttile improvement in pain level from my neck and continued having bad cervical headaches. 2003, three different C-spine surgeries to have bone spurs removed from C-4 to T-1. Loss of motor function in left hand and severe sleep disruption from headaches and neck pain. Forced to retire at age 47. After seeing 6 different doctors ranging from surgeons to rehab Drs to pain management doctors the conclusion was that there were no surgical options and to begin to focus on chronic pain management. Starting in 2003, I began a pain management regiment using opioids. In 2013 had my 1st lumbar spine surgery to repair two ruptured discs. Currently, still have constant c-spine pain, headaches, left hand weakness, lumbar spine pain and positional numbness in my left leg. I have managed tolerance issues with opioids with high does ibuprofen and Tylenol, which I know is unsafe,.a couple of days per month. All of the federal attention to the opioid abuse problems will affect how I've managed to cope with chronic pain for the past 15 years. I only see one doctor, never refill early, and never take more than prescribed. I have been at the same prescribed amount for over 10 years. I am sure, like others on this board, we will be impacted because of other people abusing the very drugs that make life livable for people like us. I don't have any answers to the issue of drug abuse or overdoses. I only know with out opioids, I will not live long if forced to only take ibuprofen and Tylenol to manage my condition. There is nothing in my situation that says I'm at risk of an overdose, have had zero issues managing my own prescriptions, have never shared or used other peoples drugs. I really hope there is some common sense interjected in the current opioid "crisis" that make provisions for people like myself.

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@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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@grandmar
You are fortunate to have a pool as water therapy is an excellent way to keep your pain levels down. As I’m sure you know that you can do so much more in a pool than you can on dry land. I often use pool noodles to let myself float and it feels wonderful not to feel any pressure anywhere on my body. After I broke my pelvis in 2012 I did a lot of water therapy and it made a big difference in my recovery as my body was already compromised from previous car accidents. I’m sure that you could find lots of good pool exercises on line. I believe that any exercise is good exercise and that you will gain more than you may realize. Although we don’t have your great weather throughout several seasons we only use outdoor pools here (near Niagara Falls, NY but on the Canadian side) for 3-4 months a year. I use my wonderful neighbours pool or my son’s pool to get my water therapy in and to help my legs to keep going. I do attend a special gym at our local university that is designed for anyone in a wheelchair or power chair. We work with students from either the Health Sciences or Kinesiology program that are in their last year or 2 at the university and they keep it light and fun but they are always challenging us to do more reps or to add more weight to the machines that we use. Of course all of the members challenge each other in different ways but the encouragement of the students and the other members makes it so that I want to be there and I don’t want to let the students that I work with down after they invest their time in us. I am so pleased that I found out about this program as I am making some improvements although slowly but it is all left to each individual as to what progress each will make. We can pick & choose when we go and who we work with as the students all rotate in and out of the program. This is an ideal program for me as I was never inclined to want to work out as I really never liked work8ng out.

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@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
Wow! You really did luck out finding such a wonderful program! I've gone through aquatic PT a couple of times. Most recently, I went through a program at a hospital that has a fantastic therapy pool. Pity the therapist was not as fantastic. It is good to push yourself, but you need to know how much and for how long.
The therapist I used at this particular program pushed me too far. I knew he was and would let him know when I had enough. He seemed annoyed with me but I knew my body. After my first session, I was in bed for a couple of days recouping. I have more than just pain, I have acute nerve inflammation and he worked me to a point that I could not get the inflammation down no matter what. I did go back a couple of weeks later and advocated for myself even more. But, that program just wasn't working for me. So I take what I have learned and do it in my own pool although it does not have the therapeutic water temperature which I find so soothing.

Have a fantastic and pain free day!
Ronnie (GRANDMAr)

REPLY
@hillyard

Greetings fellow chronic pain people. My chronic pain issues really started in 1975 with a football injury to the c-spine. Managed to cope for years until 1997 when I developed pain and weakness in my left arm. Long story short is that my 1975 injury was misdiagnosed and I had in fact broken my neck back then. Starting in 1997, I had a fusion c5-c7. 1999 ruptured disc C4-C5. and another fusion surgery. In this time period started having the most painful headaches I can describe. 2001, it was discovered the 1st fusion had failed and disc ruptured C-7-T1. Two extensive C-spine surgeries in 2001. Very lttile improvement in pain level from my neck and continued having bad cervical headaches. 2003, three different C-spine surgeries to have bone spurs removed from C-4 to T-1. Loss of motor function in left hand and severe sleep disruption from headaches and neck pain. Forced to retire at age 47. After seeing 6 different doctors ranging from surgeons to rehab Drs to pain management doctors the conclusion was that there were no surgical options and to begin to focus on chronic pain management. Starting in 2003, I began a pain management regiment using opioids. In 2013 had my 1st lumbar spine surgery to repair two ruptured discs. Currently, still have constant c-spine pain, headaches, left hand weakness, lumbar spine pain and positional numbness in my left leg. I have managed tolerance issues with opioids with high does ibuprofen and Tylenol, which I know is unsafe,.a couple of days per month. All of the federal attention to the opioid abuse problems will affect how I've managed to cope with chronic pain for the past 15 years. I only see one doctor, never refill early, and never take more than prescribed. I have been at the same prescribed amount for over 10 years. I am sure, like others on this board, we will be impacted because of other people abusing the very drugs that make life livable for people like us. I don't have any answers to the issue of drug abuse or overdoses. I only know with out opioids, I will not live long if forced to only take ibuprofen and Tylenol to manage my condition. There is nothing in my situation that says I'm at risk of an overdose, have had zero issues managing my own prescriptions, have never shared or used other peoples drugs. I really hope there is some common sense interjected in the current opioid "crisis" that make provisions for people like myself.

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@hillyard
Good Morning!
Wow! What a story! I am amazed that the fracture you had so long ago was never picked up. Talk about a negligent doctor. Whoever read your films should be sued!!!! I recently had a Mylogram CT for my T-spine. I am having issues that present like I've had spinal trauma, and I haven't. My doctor went over all the reports and tests I have had. He was stumped. Then, after the last CT, while we were all sitting in the room, my doc said that he wasn't even 50% sure that the CT was all that accurate. He looked over the pictures and found, on the picture, the tiniest dot. He wasn't sure if it was a type of a cyst or tumor (malignant or not). He was pretty sure it was a cyst, which would explain the symptoms I've been having. I went for a MRI with contrast. Sure enough, the doctor was right, I have a cyst in my spinal canal that is blocking spinal fluid from moving through the canal smoothly.

Anyhow, I also experienced HORRIBLE neck and headaches. I could only sleep so long before the pain would wake me up. If I tried to stay in bed, the pain would only worsen. I had disc replacement of C5/6 at the end of February. Within a couple of weeks, the headaches were gone (except for one here and there). Now, 6 months later, they are ALL gone! I still don't sleep, but that's another story for another time.

I know how horrible it is not to be able to get your meds. My surgeon told me that in Florida, (where I live) he can only prescribe pain meds when he actually does a surgery and then only 1 week at a time. I tried using high doses of Advil (prescription strength) and it worked well for other issues I was having. However, I developed stomach problems because of it. I can no longer take NSAIDS (again, another story). I am limited to Tylenol, which is useless. I have some pain meds but I have to be desperate to take them for fear I will use them up and then what?????? I also NEVER take more than I should or share. As a matter of fact, one of my previous pain docs used to do a random urine test before doing my shots. I actually take less than prescribed, which is probably why it doesn't work very well.

I hope you find answers to help with your pains!

Here's to a pain free day for us all!

Ronnie (GRANDMAr)

REPLY

@grandmar read about yoir MRI with contrast I missed yoir reply so glad to read it here since you have a cyst in the spinal canal is anything being done about it ? Or is it to risky? Im assuming it is but what did Dr say?

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Yes let us know. I had shots in my neck today. Back to do lower back again next week. I guess they can only do treatments for three tiles. They are starting to help.

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@grandmar Hello Ronnie:

I am sure you were glad to at least know about the cyst in the spinal column. Like @lioness said, I too am wondering what the doctor can do about the cyst in the spine. Do you have any treatment plans for that?

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@hopeful33250

@grandmar Hello Ronnie:

I am sure you were glad to at least know about the cyst in the spinal column. Like @lioness said, I too am wondering what the doctor can do about the cyst in the spine. Do you have any treatment plans for that?

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@hopeful33250
Hi!
Yes, I am very happy that the cyst was found.
The cyst can be surgically removed or nothing can be done and the doc can just watch it.
We haven't made a plan yet.
My guess is that the surgeon will make a decision when he actually sees the disc, which I have and will bring with me at my pre op appt.
Once he sees it, I am sure we will make some sort of plan.
He might decide to wait and see how big it is once he gets inside.
We discussed, before the MRI that if there was a cyst, it could be a big culprit in many of my symptoms.
To be continued…..
Here's to a pain free rest of the day!!
Ronnie (GRANDMAr)

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@oregongirl

Yes let us know. I had shots in my neck today. Back to do lower back again next week. I guess they can only do treatments for three tiles. They are starting to help.

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@oregongirl
Hi!
So happy the shot is starting to work.
It can take 7 to 10 days before you get the full affect.
As far as I have been told, you can have a steroid injection (epidural), 3 to 4 times a year in each area.
I was also told that waiting 3 weeks before getting another shot is the rule of thumb.
Although we can't feel it, all the shots are systemic.
However, it does not feel the same all over because of the location of the shot.
I pray that not only the shot works but it lasts.
Here's to a pain free rest of the day….
Ronnie (GRANDMA r)

REPLY
@hillyard

Greetings fellow chronic pain people. My chronic pain issues really started in 1975 with a football injury to the c-spine. Managed to cope for years until 1997 when I developed pain and weakness in my left arm. Long story short is that my 1975 injury was misdiagnosed and I had in fact broken my neck back then. Starting in 1997, I had a fusion c5-c7. 1999 ruptured disc C4-C5. and another fusion surgery. In this time period started having the most painful headaches I can describe. 2001, it was discovered the 1st fusion had failed and disc ruptured C-7-T1. Two extensive C-spine surgeries in 2001. Very lttile improvement in pain level from my neck and continued having bad cervical headaches. 2003, three different C-spine surgeries to have bone spurs removed from C-4 to T-1. Loss of motor function in left hand and severe sleep disruption from headaches and neck pain. Forced to retire at age 47. After seeing 6 different doctors ranging from surgeons to rehab Drs to pain management doctors the conclusion was that there were no surgical options and to begin to focus on chronic pain management. Starting in 2003, I began a pain management regiment using opioids. In 2013 had my 1st lumbar spine surgery to repair two ruptured discs. Currently, still have constant c-spine pain, headaches, left hand weakness, lumbar spine pain and positional numbness in my left leg. I have managed tolerance issues with opioids with high does ibuprofen and Tylenol, which I know is unsafe,.a couple of days per month. All of the federal attention to the opioid abuse problems will affect how I've managed to cope with chronic pain for the past 15 years. I only see one doctor, never refill early, and never take more than prescribed. I have been at the same prescribed amount for over 10 years. I am sure, like others on this board, we will be impacted because of other people abusing the very drugs that make life livable for people like us. I don't have any answers to the issue of drug abuse or overdoses. I only know with out opioids, I will not live long if forced to only take ibuprofen and Tylenol to manage my condition. There is nothing in my situation that says I'm at risk of an overdose, have had zero issues managing my own prescriptions, have never shared or used other peoples drugs. I really hope there is some common sense interjected in the current opioid "crisis" that make provisions for people like myself.

Jump to this post

Sorry to hear of your condition. Really glad you do not have the bad headaches. The sleep thing is something which has been constant with me for a long time. Somehow we manage to adapt. I too have a cyst mid cord at the site of my initial injury. The initial diagnosis of my 1975 injury was a separated shoulder. Odd as that sounds, I did have a slight shoulder separation but there was no further follow-up regarding the c-spine. Scary as that was, I was cleared to return to football weeks later and played several more games, now I know was with a fracture at C-6. Times have sure changed. Thank you for your response, Hillyard

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