1. < Spine Health

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.

Interested in more discussions like this? Go to the Spine Health Support Group.

grandmaR | @grandmar | Jun 25, 2018
In reply to @grandmar "Hi all!! It's been a bit of time since I wrote. For those of you who..." + (show)
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@lioness

You are so very sweet to offer the book. I am Jewish and I am sorry, but I don't pray to Jesus.
I hope this does not offend you!
Thanks again for the offer,
Ronnie (GRANDMAr)

REPLY
lioness | @lioness | Jun 25, 2018
In reply to @grandmar "Hi all!! It's been a bit of time since I wrote. For those of you who..." + (show)
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@no problem hope you find relief from this headaches

REPLY
grandmaR | @grandmar | Jun 25, 2018
In reply to @grandmar "Hi all!! It's been a bit of time since I wrote. For those of you who..." + (show)
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@oregongirl
Wow, you have certainly been through the ringer!!!!!
Actually, my neurosurgeon does not mind me going to a pain doctor as long as he knows first and the shot is not in an area he is trying to monitor. I also cannot have a shot 'x' amount of weeks before surgery.
I have a fantastic pain doc (the first in 5) who kept me pretty much pain free for 4 1/2 years.
Each shot, in my lumbar spine, lasted anywhere from 6-12 weeks!!!
My cervical spine started to act up, too, for the first time in years!
He tried several things and nothing worked.
That is why I finally opted for surgery.
I had C5/6 replaced with artificial discs.
Now, my last 2 lumbar injections have stopped working.
I am so, so sad!
I now fall when I don't use a cane to help me walk.
I am in constant pain and I get those horrible headaches.
I see the surgeon next week!!!!
We are going to decide which surgical procedure to do.
I see myself as having an addictive personality so I am VERY careful with pain meds.
I rarely take them.
I have Hydrocodone and truthfully, it really does not work very much, other than to make me a bit goofy.
I once took Tramodol for a tooth infection.
Truth......it is the only pain med that has worked!
No one will prescribe them to me even though they know I rarely take anything.
As far as adding Tylenol and Advil to pain meds, I can't.
I can't take Advil or any meds like it, including all blood thinning products.

Stay strong and feel good!!!
Ronnie (GRANDMAr)

REPLY
grandmaR | @grandmar | Jun 25, 2018
In reply to @gailb "@grandmar First, I'm so sorry that you are experiencing this pain and suffering after your previous..." + (show)
@gailb

@grandmar

First, I'm so sorry that you are experiencing this pain and suffering after your previous surgery for your cervical spine. Falling is a dangerous thing for all of us as we age, and even more so since your recent successful surgery. At the risk of repeating myself, I would like to suggest that you try ART (Active Release Technique) before you opt for another surgery. I know ART has prevented for over a year my needing major back surgery for my L4. My practitioner has worked on various other debilitating pains in my left shoulder, my TMJ, and my cervical radiculopathy over the past few months. Every time it has worked to relieve the pain. I see him this morning for the second treatment on my lumbar area since I awoke with acute pain and inability to walk last Thursday. I am much better after the first treatment and have been able to walk for limited amounts of time since the Friday treatment.

This is why I would like to see you check out ART treatments before the invasive surgery. Please let me know how you feel about this option. You are facing difficult times right now. I'm glad you have this forum to connect with others who are having chronic pain as well. Your contributions and expressions of support for others here are so important for so many. I hope you find relief for your pain.

Gailb
Volunteer Mentor

Jump to this post

@gailb
Hello!
I actually DID some research on the ART you previously suggested.
I also went as far as to find one close to me.
At my last visit with the neuro-surgeon, I brought it up.
He said it was another chiropractic procedure and felt it could do me more harm than good.
Now, this guy has approved of me continuing with the pain doc for my lumbar spine and to return for therapeutic massage.
He was just against the ART practitioner.
I am VERY well aware that I need to be my own advocate!
I am afraid if I do go, and I will still need surgery, I will lose his talents.
He is a very talented surgeon who is very well rated on all websites and I really don't want to lose him.

I just don't know???!!!
Ronnie
(GRANDMAr)

REPLY
GailBL, Alumni Mentor | @gailb | Jun 25, 2018

For those in the Chronic pain thread who have Fibromialgia, I have copied a message I received from the EpicGenetics group on how to participate in their study. They did send me the blood test kit and had a phlebotomist come to my home to draw my blood and FED Ex the kit back. It was super easy and cost nothing! Also, their website contains excellent information about the work they are doing and the study they are doing with UCLA, and other partners.

"Give our NEW, Easy Telephone Application your name, phone, and email address, and we’ll call you to complete your application over the phone—at your convenience*. Once completed, we will verify your insurance coverage and connect with your healthcare provider—we can even arrange for your blood sample to be taken. EpicGenetics is committed to real answers that will lead to real treatment options for those who have Fibromyalgia. Application Assist is just another way we’re making things better for the FM Community."

CONTACT:
https://fmtest.com or call: 310-277-4600, 9:30 to 5 pm PDT, M-F.

REPLY
6 replies
GailBL, Alumni Mentor | @gailb | Jun 25, 2018
In reply to @gailb "@grandmar First, I'm so sorry that you are experiencing this pain and suffering after your previous..." + (show)
@gailb

@grandmar

First, I'm so sorry that you are experiencing this pain and suffering after your previous surgery for your cervical spine. Falling is a dangerous thing for all of us as we age, and even more so since your recent successful surgery. At the risk of repeating myself, I would like to suggest that you try ART (Active Release Technique) before you opt for another surgery. I know ART has prevented for over a year my needing major back surgery for my L4. My practitioner has worked on various other debilitating pains in my left shoulder, my TMJ, and my cervical radiculopathy over the past few months. Every time it has worked to relieve the pain. I see him this morning for the second treatment on my lumbar area since I awoke with acute pain and inability to walk last Thursday. I am much better after the first treatment and have been able to walk for limited amounts of time since the Friday treatment.

This is why I would like to see you check out ART treatments before the invasive surgery. Please let me know how you feel about this option. You are facing difficult times right now. I'm glad you have this forum to connect with others who are having chronic pain as well. Your contributions and expressions of support for others here are so important for so many. I hope you find relief for your pain.

Gailb
Volunteer Mentor

Jump to this post

@grandmar

Please follow your surgeon's advice and your intuition about ART. I know you are good at being your own advocate. I thought maybe you had considered ART in the past, but I didn't remember for sure. My surgeon was skeptical about ART at first, and his only advice was not to let him do any "adjustments on my spine. My ART practitioner only works on my muscles, and was fine about not doing bone manipulation. I understand your concern about the possibility of losing your surgeon. Follow your body's needs. Your surgeon certainly knows your condition much better than I could ever know. I'm glad you are seeing a reputable surgeon who is advising you. It's so important to have excellent doctors who encourage communication with them.

Warm regards,
Gailb
Volunteer Mentor

REPLY
Jen, Alumna Mentor | @sandytoes14 | Jun 25, 2018
In reply to @lifetime "The support and encouragement i have gotten here has been just unbelievable!! I have never gotten..." + (show)
@lifetime

The support and encouragement i have gotten here has been just unbelievable!! I have never gotten SUCH CARING even close to this!!! I can't stress that enough!!
Sadly, I have severely re-hurt my back over and over these past few years especially, because my doctor told me I had absolutely no limits on what I could do. I have leaned over many times to pick up heavy things, only to be "frozen" in gut-wrenching pain, and not able to straighten back up for at least a week. I really thought my doctor knew best.
I sadly have no family near by who can help. I live alone (my fiance died unexpectedly several years ago due to an unknown congenital heart condition) and must do everything myself. My doctor always said that it was OK.
I have no other health insurance, or recourse.
One hard and ugly truth I have learned over and over about the VA hospital here.. if you slight a certain doctor, not follow what he says or try to turn him in, you PAY for it a hundred times over. I hesitate to even mention specific circumstances as most people would probably not even believe that any doctor could EVER stoop to or dare to do such things.
The more I try to complain or try to stand up for myself in even the smallest way, the more certain doctors can (and do!) get back at you. It becomes so brutal and traumatizing, over and over and over. But it is REALITY.
It makes it worse, I believe, that I am a woman, as certain male doctors will shamelessly and openly harass and cruelly sexually abuse women patients, with no fear of reprimand whatsoever.
PLEASE PLEASE NOTE: MOST DOCTORS here are VERY ethical and VERY kind to all. I just happened to have gotten the very bad one or two.

Jump to this post

@lifetime Hello Lifetime! I am Jen and I am a Volunteer Mentor here on Mayo Connect I have read the many postings about your problem with the healthcare at the VA. My husband served in the Navy for 30 years, retiring in 2014. Over the past four years I have learned quite a lot about the VA. May I ask if you retired from the service and how long ago? What state do you live in? I know the VA did start a program for Veterans to get their health care from private physicians. Perhaps this could help you.

REPLY
GailBL, Alumni Mentor | @gailb | Jun 25, 2018

I said I would check in with you all after my ART treatment today. After my ART treatment this morning, I am MUCH better. I don't know if it's just the endorphins or what, but I'm enjoying the lack of pain and muscle spasms. I am sold on ART, as practiced by my chiropractor! My grandson just started treatment for a painful shoulder that has bothered him for 10 years. I'll be interested if he finds relief because he's done massage, accupuncture, and exercises all these years and they haven't relieved the pain. He's 27 which is too young to have this problem. I'll let you know if he finds relief too.

Gailb
Volunteer Mentor

REPLY
Jen, Alumna Mentor | @sandytoes14 | Jun 25, 2018
In reply to @grandmar "Hi all!! It's been a bit of time since I wrote. For those of you who..." + (show)
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@grandmar Hello Ronnie,
I'm so very sorry to hear you are having these horrid headaches. Has any doctor tested to see if you are perhaps leaking spinal fluid? I know you write that they ease when sitting up so I wonder if it possible that you are leaking fluid while laying down. I would ask your neuro-surgeon. It couldn't hurt.
Gentle hugs to you,
Jen

REPLY
lioness | @lioness | Jun 25, 2018
In reply to @grandmar "Hi all!! It's been a bit of time since I wrote. For those of you who..." + (show)
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@grandmar why won't anyone prescribe Tramadol ?have you seen your rheumatologist? She prescribes it for my fibromyalgia.

REPLY
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