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.

@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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I walk at a very leisurely pace. I always take my little 7lb Yorkie with me, she poops out quickly so I have a stroller for her. The stroller actually helps me as I have something to hold on to that helps keep me upright for all those hours. I just feel like my whole midsection is sinking. Does anyone else have this problem. My fusion was T2 through L4.

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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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Lynn12…Yes I too have a 5 lb Yorkie. But no stroller. Some days I do well with the walk, but others can't wait to sit down. It is very hot here in Texas, so our walks are reduced due to heat.

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@oregongirl

Mary. I have a terrible spine and neck. I have RA and only God knows how long before I cannot walk anymore. I force myself to walk my dog 4 times a day. I come home hurting so bad that I must lie down. They did shot a week ago and doctor "warned" me that if this did not help at all, he cannot do anymore shots. First time I had shots and I cannot believe he is giving up that easy. Doctors today.. I just don't know what to say anymore about them. After telling him HE IS GOING TO DO MY NECK again, I have an appt on Monday. The neck shots hurt terrible, but if it will work HELP ME. And of course, no pain pills. I would not even be able to tolerate the pain if I did not have the Hemp Lotion. I know I don't want to get addicted to heavy duty pain meds, but what else can we do? My spine doctor said he could fit me with a brace. Oh great wonder what that would be like? I fell about 6 months ago and have concrete in my Veritibra. Keep my spirits up and keep going.

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Mary..Oh my goodness. so many surgeries. If he suggests surgery to me, I will leave his office and go home. My shots that I got last week made my entire body hurt so bad. I could barely put my foot down on the ground to walk. The a day later no pain. It must be the medicine going into my body. My kids have finally talked me into moving into an INDEPENDENT living facility. Well, you know how that will go. Once I fall, they will require me to have ASSISTANCE. My daughter lives in Idaho so, that is where I would go. I love San Antonio and Oregon for over 11 years. Idaho does not excite me. She is in southern Idaho. Only nice thing is she is close to the Oregon border. I can cross the border go get some Marijuana and smoke it or use it and then drive back Actually, I don't smoke it, I use the oil. I have not had any since I left Oregon. It is by far MUCH BETTER than the pain drugs. You do not get HOOKED on the MJ. That is a lie the drug companies put 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.

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@lynn12
Hi Lynn!
It's a great idea to have the stroller to hang on to. I do the same when I go to stores. If it doesn't have a scooter, there has to be a shopping cart for me to hold on to.

I haven't had fusions, but what you are describing makes sense based on what I have been told about fusions.
When you are fused, the fused discs lay heavily on the discs below it. That is why another fusion is eventually needed. The discs basically collapse on one another.

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

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@oregongirl

Mary. I have a terrible spine and neck. I have RA and only God knows how long before I cannot walk anymore. I force myself to walk my dog 4 times a day. I come home hurting so bad that I must lie down. They did shot a week ago and doctor "warned" me that if this did not help at all, he cannot do anymore shots. First time I had shots and I cannot believe he is giving up that easy. Doctors today.. I just don't know what to say anymore about them. After telling him HE IS GOING TO DO MY NECK again, I have an appt on Monday. The neck shots hurt terrible, but if it will work HELP ME. And of course, no pain pills. I would not even be able to tolerate the pain if I did not have the Hemp Lotion. I know I don't want to get addicted to heavy duty pain meds, but what else can we do? My spine doctor said he could fit me with a brace. Oh great wonder what that would be like? I fell about 6 months ago and have concrete in my Veritibra. Keep my spirits up and keep going.

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@oregongirl
Good Morning!
I am so sorry your shots hurt so much. That is actually a good thing because it means that the medication is going where is needed. When I used to get my shots, I could actually feel the steroids going down my legs and up my back. It is painful. The reason there is pain is because your nerve endings are inflamed and the medication is trying to calm it down.

If your shots work, I agree that surgery should not be a thought. I took shots for over 10 years. Some were better than others. Some pain docs were better than others. I went through 5 pain docs before I found one that actually helped me. It takes a knowledgeable doctor who can find the right spot and use the right meds to help. My last pain doc was FANTASTIC! However, after 4 years, the shots stopped working as PT has. Now it is surgery all the way.

Have a terrific weekend with as little pain as possible!
Ronnie (GRANDMAr)

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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

How old is your Yorkie? Lucy is 10years old and goes everywhere with me, this dog is so mellow, never ever yaps, goes to anyone, kids, etc, gentle as a lamb.

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@grandmar

Hi All!
An update on my saga……
I am scheduled for surgery on Sept. 17th.
I am having a procedure called X-Lift for L3/4.
With this procedure, they go through your side in a 1 inch incision.
I am hoping this will help with my lower body pains and will be enough for me to work on getting my muscle strength back……as well as my life!

When I was at the neurosurgeon this week, he was reading the report from my Mylogram CT.
He said he didn't really go along with the report 100%/
He felt there was more going on.
So with a fine tooth comb he looked over the films himself.
He found a 'dot' in the spinal column.
He did not know if it was a tumor or cyst (can't remember the name of it).

I went for an MRI with contrast.
Guess what?
He was right, there was something and thank goodness it was not a tumor or cancer.
It is a certain kind of a cyst that I could have had since birth or from a previous fall.
They usually just watch it when it is that small, but even so, it can be the answer for many of the things that I have been experiencing.
Doc did not mention changing plans for my X-Lift so I assume we are going ahead with it.
I am, of course, not happy to have yet another surgery, but I am excited at the prospect of getting at least some of my quality of life back.

I am currently sitting in my chair, in my family room, because of pain.
I just took a pill which will take the edge off but not the pain.
In my room, is sleeping my precious 7 year old granddaughter who wanted a sleepover.
I haven't been feeling well so she has not been able to stay.
Felt good earlier, but now……………..

It is for her, my 2 other grands, my children and wonderful hubby that I fight so hard to find answers.
I am 63, retired and waiting to get this retirement hopping…………

Here's to a painful weekend for us all…..
Ronnie (GRANDMAr)

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@grandmar Nothing like grandchildren to help keep us going. T'would be nice if those of us with chronic pain would NOT have a painful weekend. Reality can be difficult at times. Do hope the upcoming surgery frees you some from your pain.

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@grandmar

Hi All!
An update on my saga……
I am scheduled for surgery on Sept. 17th.
I am having a procedure called X-Lift for L3/4.
With this procedure, they go through your side in a 1 inch incision.
I am hoping this will help with my lower body pains and will be enough for me to work on getting my muscle strength back……as well as my life!

When I was at the neurosurgeon this week, he was reading the report from my Mylogram CT.
He said he didn't really go along with the report 100%/
He felt there was more going on.
So with a fine tooth comb he looked over the films himself.
He found a 'dot' in the spinal column.
He did not know if it was a tumor or cyst (can't remember the name of it).

I went for an MRI with contrast.
Guess what?
He was right, there was something and thank goodness it was not a tumor or cancer.
It is a certain kind of a cyst that I could have had since birth or from a previous fall.
They usually just watch it when it is that small, but even so, it can be the answer for many of the things that I have been experiencing.
Doc did not mention changing plans for my X-Lift so I assume we are going ahead with it.
I am, of course, not happy to have yet another surgery, but I am excited at the prospect of getting at least some of my quality of life back.

I am currently sitting in my chair, in my family room, because of pain.
I just took a pill which will take the edge off but not the pain.
In my room, is sleeping my precious 7 year old granddaughter who wanted a sleepover.
I haven't been feeling well so she has not been able to stay.
Felt good earlier, but now……………..

It is for her, my 2 other grands, my children and wonderful hubby that I fight so hard to find answers.
I am 63, retired and waiting to get this retirement hopping…………

Here's to a painful weekend for us all…..
Ronnie (GRANDMAr)

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@grandmar so happy for you glad you found this Dr.I take it he is new ? Sometimes this is what it takes God bless you with this new procedure think positive this is your answer Happy for you

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@oregongirl

Mary. I have a terrible spine and neck. I have RA and only God knows how long before I cannot walk anymore. I force myself to walk my dog 4 times a day. I come home hurting so bad that I must lie down. They did shot a week ago and doctor "warned" me that if this did not help at all, he cannot do anymore shots. First time I had shots and I cannot believe he is giving up that easy. Doctors today.. I just don't know what to say anymore about them. After telling him HE IS GOING TO DO MY NECK again, I have an appt on Monday. The neck shots hurt terrible, but if it will work HELP ME. And of course, no pain pills. I would not even be able to tolerate the pain if I did not have the Hemp Lotion. I know I don't want to get addicted to heavy duty pain meds, but what else can we do? My spine doctor said he could fit me with a brace. Oh great wonder what that would be like? I fell about 6 months ago and have concrete in my Veritibra. Keep my spirits up and keep going.

Jump to this post

@oregongirl I live in an Independent building but there are alot of caretakers here for people some you pay others are from the service coordinators a program from government I dont know what it is as I pay my housekeeper twice a month but there are some people here have daily caregivers so you may have options I don't know your situation there .

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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)

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@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

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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.

Jump to this post

@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)

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@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)

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