Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

@jenniferhunter

@grandmar Ronnie, have you tried physical therapy? I have had cervicogenic headaches too before my cervical spine surgery and occasionly I can still get similar headaches. What causes them for me is a muscle spasm that moves the cervical vertebrae around and it rotates or tilts one or more levels that in turn affects the muscles attached that connect to the back of the head. My PT does myofascial release which helps a lot, and you can physically feel if there is misalignment. My PT can gently nudge them back in place and the headache stops. She also used to use a Dolphin neurostimulator on the nerve roots which helps pain by temporarily blocking the neurotransmitters that send the signals. I've become aware of catching this early and can stretch and prevent it. My thoughts are that by maintaining proper alignment, there will be less pressure on the other discs. A PT can give you a home program of things to do that can help and buy you time if you are headed toward more spine surgery. I had a fusion at C5/C6 a couple years ago, and I have thoracic outlet syndrome (TOS) which makes one side of my neck and shoulders tighter helping to create the issues of rotating vertebrae. I'm in physical therapy for that and making progress.

Jump to this post

@jenniferhunter
Jennifer,
Thank you for sharing your information.
I went through PT after my surgery.
I continue to do the exercises as well as work in the pool.
I did not have a fusion on C5/6, I had a total replacement, that is why I think something is going on somewhere else, or like you said, it could just be muscle tightening.
I go for theraputic massage and he always tells me about the knots he feels.
I don't let him do too much for fear he'll hit the new disks and move them in some way…..I don't know if that is even possible.
I had a massage Friday, so it could be possible the headaches are from that.
I'll have to keep a closer eye on that and see if there is a correlation between the two.

Thanks again for your suggestions!!!!!!
Ronnie (GRANDMAr)

REPLY
@sandytoes14

@grandmar Ronnie, I hope you can get relief from the headaches. I have a very hard time functioning “normally “ when I have a headache that bad. Do you feel it in a certain place?

Jump to this post

@sandytoes14
Hi Jen!
Thank you for your kind words.
Actually, within minutes after I get up and out of bed, my headache is gone!
I was just having a conversation with someone else and it got me thinking…..
I had a theraputic massage Friday.
Two massages ago, he worked so hard between my shoulder blades, that I had terrible pain a couple of days after.
I am wondering if that is why I got the headache.
I'm going to keep better tabs on the headaches and when they happen.

Have a great day!
Ronnie (GRANDMAr)

REPLY
@lioness

@grandmar Of all times ,right .I hope you can go on vacation ,but I wouldn't want to be miserable. Maybe Dr can give you something so you can go 😉 I hope so 😁😊👍

Jump to this post

@lioness
I already paid the airfare and booked the rooms….no refunds.
I've had a tough 1-1/2 yr. and a vaca is in order!
Actually, once I get up and out of bed, I am fine within 15 minutes or so.
I'll be sure to pack my pain meds, just in case.
So, he can do all the tests he wants, but I will not do a thing, if necessary until we get back.
He already gave me approval and I won't let him take it back. LOL
Thanks for the concern!
Ronnie

REPLY
@grandmar

@lioness
I already paid the airfare and booked the rooms….no refunds.
I've had a tough 1-1/2 yr. and a vaca is in order!
Actually, once I get up and out of bed, I am fine within 15 minutes or so.
I'll be sure to pack my pain meds, just in case.
So, he can do all the tests he wants, but I will not do a thing, if necessary until we get back.
He already gave me approval and I won't let him take it back. LOL
Thanks for the concern!
Ronnie

Jump to this post

@grandmar Good glad your going yes vacation is in order I read about your massage I can't take a hard hand so I always tell them not to press so hard then I can enjoy the massage maybe that would help so you don't get a headache

REPLY
@grandmar

@lioness
I already paid the airfare and booked the rooms….no refunds.
I've had a tough 1-1/2 yr. and a vaca is in order!
Actually, once I get up and out of bed, I am fine within 15 minutes or so.
I'll be sure to pack my pain meds, just in case.
So, he can do all the tests he wants, but I will not do a thing, if necessary until we get back.
He already gave me approval and I won't let him take it back. LOL
Thanks for the concern!
Ronnie

Jump to this post

In the future by trip insurance. We just canceled $1,000 worth of tickets and got a full refund because I bought trip insurance for $70. Well worth it when you have illness in the family and you know that a trip could be interrupted 0p

REPLY
@grandmar

@lioness
I already paid the airfare and booked the rooms….no refunds.
I've had a tough 1-1/2 yr. and a vaca is in order!
Actually, once I get up and out of bed, I am fine within 15 minutes or so.
I'll be sure to pack my pain meds, just in case.
So, he can do all the tests he wants, but I will not do a thing, if necessary until we get back.
He already gave me approval and I won't let him take it back. LOL
Thanks for the concern!
Ronnie

Jump to this post

@grandmar Have a fabulous vacation, when are you going? I could really use one too but since we will be going to Denver in August for our son's wedding I am not sure our travel budget will allow something else before that. Maybe we will just do a weekend in NYC to visit our daughter. Not quite the relaxing, warm vacation I would like but at least it will be a change in scenery, plus she loves it when we visit her.
If I had my preferences, I would go to Hawaii. I love the Caribbean too but I am a bit nervous about going there due to the medical care not being on a par with what we have here.
JK

REPLY
@contentandwell

@grandmar Have a fabulous vacation, when are you going? I could really use one too but since we will be going to Denver in August for our son's wedding I am not sure our travel budget will allow something else before that. Maybe we will just do a weekend in NYC to visit our daughter. Not quite the relaxing, warm vacation I would like but at least it will be a change in scenery, plus she loves it when we visit her.
If I had my preferences, I would go to Hawaii. I love the Caribbean too but I am a bit nervous about going there due to the medical care not being on a par with what we have here.
JK

Jump to this post

Hi!
We won't be leaving for vacation until the middle of August.
Before we go, we usually like to take our oldest, who lives near us, away for a few days before school starts.
This year, I am hoping to take her to Maryland to visit her cousins, our other 2 grands.

Well inadvertently, you guessed our vaca. We will be going to Hawaii! Oahu for 5 nights and Maui for 12 nights.
Can't wait!

Any place away from home and the daily routines and reminders are a nice vace!

Ronnie

REPLY
@lioness

@grandmar Good glad your going yes vacation is in order I read about your massage I can't take a hard hand so I always tell them not to press so hard then I can enjoy the massage maybe that would help so you don't get a headache

Jump to this post

This guy I am using is new to me. We are getting to know each other and what works. We'll get there!
ronnie

REPLY
@grandmar

Hi!
We won't be leaving for vacation until the middle of August.
Before we go, we usually like to take our oldest, who lives near us, away for a few days before school starts.
This year, I am hoping to take her to Maryland to visit her cousins, our other 2 grands.

Well inadvertently, you guessed our vaca. We will be going to Hawaii! Oahu for 5 nights and Maui for 12 nights.
Can't wait!

Any place away from home and the daily routines and reminders are a nice vace!

Ronnie

Jump to this post

@grandmar We were in Oahu and Kauai on our Hawaiian vacation in 2017. Loved both places. We stayed in great VRBOs, which worked out very well – both were right on the water. I am envious that you are going there. My husband was not really interested in going to Hawaii but my son got us to go — I wanted to. After being there my husband would like to go back for a month every winter!
JK

REPLY
@grandmar

Hi!
We won't be leaving for vacation until the middle of August.
Before we go, we usually like to take our oldest, who lives near us, away for a few days before school starts.
This year, I am hoping to take her to Maryland to visit her cousins, our other 2 grands.

Well inadvertently, you guessed our vaca. We will be going to Hawaii! Oahu for 5 nights and Maui for 12 nights.
Can't wait!

Any place away from home and the daily routines and reminders are a nice vace!

Ronnie

Jump to this post

@grandmar Ronnie, My husband and I were saying today that we need to return to Hawaii next year. We lived there for nearly 5 years. I know you love it there as much as we do.
A thought on your headache…maybe it's from pollen? I know we still have tree pollen here in FL and I think you are not too far from me. I'm near Tampa.

REPLY
@sandytoes14

@grandmar Ronnie, My husband and I were saying today that we need to return to Hawaii next year. We lived there for nearly 5 years. I know you love it there as much as we do.
A thought on your headache…maybe it's from pollen? I know we still have tree pollen here in FL and I think you are not too far from me. I'm near Tampa.

Jump to this post

Good Morning!

When I was still working (and younger), we went to Hawaii every year for 10 days to a week. These trips made work more tolerable! I truly came home more relaxed and in a much better state of mind!!!!
It is my dream to take my entire family there.
All the kids have been, but I want my grands to experience it, too.
I don't know if they will understand how I feel about Hawaii, but I hope they love it.
It is my hope to be able to take the entire family next year.
I have a time share that I switch over to Hawaii when we go there.
I already saved enough time (points) for rooms for the family for 10 days (going all that way for a week is a lot).
Just hoping something good happens with air fares.
We shall see!!!!!
Where in Hawaii did you live?
Why did you leave (if not too personal)?
I ALWAYS look at real estate in Hawaii.
Maui has gotten toooooooooooo expensive.
We should have bought a condo years ago when we had the opportunity.
We looked at a new built in Lahaina that was VERY reasonable, even for the time, but we chickened out.
It seems that real estate in Waikiki/Honolulu has not risen as much.
But that is a pipe dream.
I'd NEVER see my kids and grands unless I sent them FIRST CLASS air tickets (LOL).
Oh well!

Yes, we are not far from Tampa.
We are in the Lakeland/Bartow area.
We are in Tampa all the time for a variety of reasons including my favorite……….shopping and my not so favorite……..docs!!

Yes, we do still have lots and lots of pollen.
My lanai is full of it.
You dust and BAM, it's all over everything, again.
Although your thought is a good one, I don't think it is the pollen since the headaches are only in the early, early morning (or late, late night) and I NEVER open a window in my house and we NEVER leave a door open.
Thanks anyway for the thought!

Mahalo and Aloha!
Ronnie (GRANDMAr)

REPLY

New to this group. I've had back pain since I was 33. I'm now in my late sixties. Have had two lumbar fusions. As of three years ago, I have a Medtronic Stimpulation Implant at PRC, pain management in Ormond Beach, FL, which relieved some pain. Got me off the couch, anyway. Now experiencing new type of pain in bilateral hips and the backs of both of my thighs. Yes, I've had the stimulator adjusted two times with no results. Two weeks ago, I had six facet joint injections in my lumbar spine. Experienced a total of two days total relief. On the third day, the pain returned with a vengeance. Now, I'm scheduled for a second set of facet injections. The next step is nerve ablation, which I understand, may last anywhere from six months to one year. I haven't decided on the ablation. So frustrated.

REPLY
@ruby2019

New to this group. I've had back pain since I was 33. I'm now in my late sixties. Have had two lumbar fusions. As of three years ago, I have a Medtronic Stimpulation Implant at PRC, pain management in Ormond Beach, FL, which relieved some pain. Got me off the couch, anyway. Now experiencing new type of pain in bilateral hips and the backs of both of my thighs. Yes, I've had the stimulator adjusted two times with no results. Two weeks ago, I had six facet joint injections in my lumbar spine. Experienced a total of two days total relief. On the third day, the pain returned with a vengeance. Now, I'm scheduled for a second set of facet injections. The next step is nerve ablation, which I understand, may last anywhere from six months to one year. I haven't decided on the ablation. So frustrated.

Jump to this post

Hello @ruby2019. You may noticed that I moved your discussion and combined it with another discussion titled, "Chronic Back Pain for Years." I did this so you could meet all of the members on Connect already discussion chronic back pain. If you are replying by email, you can click on VIEW & REPLY to be brought to the new location of your post and so that you can read through some of the other posts from members.

Here are a few other discussions you may find interesting as well:

Spine Health > Facet Joint Injections – Anyone had success? > https://connect.mayoclinic.org/discussion/facet-joint-injections-anyone-had-success/
Spine Health > Chronic Pain and Spinal Fusion > https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/
Spine Health > Spine Lumbar fusion surgery > https://connect.mayoclinic.org/discussion/spine-lumbar-fusion-surgery/

REPLY

Hi Joan. Your story is one of the saddest I have ever heard. I have a funny feeling that your "pioneer of back surgery in Phila." was also my surgeon. He was very highly recommended and I did my homework. Can I call him Dr. "B"? He did my fusion back in 2004 and there was scoliosis as well, so he had to cut me in front and back. I had some bad periods of pain afterwards but the use of Opana seemed to help get me through another few years along with vicodin. About 6 months ago I started to feel real bad pain again. This time I feel it down both my thighs and into my feet. The early part of each day isn't bad but come early afternoon it starts no matter what I do and by 5 pm – it's brutal. I see a pain management office to get these scripts but they don't do a thing and I was searching for people's thoughts on a second operation when I saw your post on here. I guess we all "pale" in comparison, but that doesn't make the pain go away.

REPLY

Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar, groin and hips for months and it has escalated to the point where I have trouble walking. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints (cartilage & ligaments torn due to excessive motion) and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then Radio Frequency (RF) nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all (this is a complete negative test for SIJ instability). My surgeon called me in for a chat this past week. The result being I have scheduled Bilateral Open SIJ fusion. Evidently this is a rarely used surgery as Minimally Invasive Surgery is the procedure of choice. He feels with all the damage,Open is the way to go. In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real one) to help pick up the numerous things I drop (due to cervical fractures), retrieve things, help me balance, and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.
My advice to all in pain:
1) Pain is here forever
2) Opioids will rarely help the pain
3) Go to the best surgeon even if you need to travel
4) Get a 2nd & 3rd opinion as this surgery will affect your life
5) Do any and everything possible not to have a fusion unless it is a must
6) If nothing helps, try marijuana (in legal states) as I have found that this is my best pain relief
7) Most of all, find happiness in anything.
Thanks for reading. I feel better already.

20181017_193845406_iOS

REPLY
Please login or register to post a reply.