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.

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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@gailb your new home sounds wonderful. I would love to have a swimming pool but here in New England it’s a bit of a splurge, since the season is so short.
JK

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@jlfisher56

Thank you Justin and I gladly will share my story if it can help anyone. It is very lenghty so I will try to keep it as abbreviated as possible but to the point. I can understand some of what physical therapy you “might” have gone through post-op with an ankle fusion (had a total rt knee and lt hip replacement). You are correct…long and hard.
I injured my back as a nurse involving a patient. For 2 years I was misdiagnosed as a “lumbar strain” when actually it was a cervical cord compression at C5 to C7. I did have a slight herniation at L4 and slippage and most pain seemed to come from there. My bowel and bladder were affected, legs were weak and arms. I worked in the NICU as “light-duty” using a special back brace but over 2 years continually symptoms became worse. The head of physical therapy stated my EMG showed more from the cervical or upper thorax than lumbar. I started to pronounced arm weakness, neck pain,and cervical headaches. The physiatrist stated, “I tell the doctors to always check the whole back because often the problem is coming elsewhere and not where the patient’s pain is.” My doctor “knew” better and thought MS but the MRI was negative.
To shorten the story, I went to the”pioneer of back surgery” in Philadelphia (an orthopedic surgeon I knew) and saw his neurologist. First glance he noticed in my face the abnormal jaw reflex and the change in the curvature of my neck into an “L” shape. I had almost a “total” compression C5-C6 and C6-C7 just about as bad. My doctor stated I should have been dead or a quadriplegic and was amazed I was even walking. I had an anterior fusion 2 years after my initial injury (1994) and then the slippage and herniation L4-L5 worsened (I was working part-time as an instructor at my hospital).
I needed trimming L4 and fusion L5-S1 with hardware posterior in 1995 and kept working. My symptoms improved with some neurological deficits remaining but not that severe. Pain only when walking too much and not taking enough breaks. As time went on, I started have all the original symptoms reoccur.
I had what is called a “failed” fusion. My fusions were unstable and areas above and below were herniating or impinging nerves. The peripheral nerves to arms, legs, bowel and bladder and now increasing pain happening more and more were becoming constant. In 1998, thorough testing (discogram, MRIs, EMGs, i.e demonstrated I had a “bad” back). I almost fell off the litter when the x-ray doctor told me.
These were extensive and because of years of the “failure”, permenant nerve damage has remained even though some did get better. I had a posterior cervical fusion C4-C7 and 6 weeks later anterior cages and posterior fusion L3-S1 Lumbar area. I developed a post-op hematoma and infection of the lumbar fusion which worsened the neurogenic bowel and I needed 2 bowel operations and am left with a functioning colon but only 18 cm. The neurogenic bladder did become better in time.
I am sorry this is so lengthy but if I can help anyone, just a little more. I know length can turn people off! I developed scar tissue in the spinal cord arachnoiditis (lumbar area found in my testing before my refusions) that causes a lot of chronic pain, had nerve pain and chronic pain, which worsened as the years have gone by. Due to the nerve damage to my bowel, plus certaain medications, gastroparesis (decreased contraction of the nerves to the stomach) which can be very serious. I had botox to the LES plus take medicine to help the stomach to contract. Also, my fusion healed crooked, and I have “torticollis” (very painful), and get botox every 3 months. Many of my problems went undiagnosed for years, thus causing permanence of my symptoms to some degree.
I do apologize for the length. I do not want to bore or act like I have it worse than others. If I can help anyone or if anyone can help me. I greatly would appreciate it. I have tried many “mental” and “physical’ therapies plus my TENS unit as an adjuvant but still need my chronic pain and gastric medications. Some of the chronic pain medications are continuing to “destroy” the stomach nerves which really upsets me. I’d love to get off everything but after all these years and all the complications, am loosing hope. I keep praying.
Best to you with your ankle. I am sure you have your good days as well as bad and the “weather” isn’t always your friend. It is funny how so many have told me they can predict the weather from their “bone” injuries and I must agree LOL. Take care. Joan

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@jfsherley

I too welcome you to the Mayo Connect community and the Chronic Pain thread. I am not a medical professional and cannot make medical diagnoses or give medical advice. I can and do, share my experience with you and give you support and information when I can. I understand the problem with constipation caused by pain medications. I too began taking strong prebiotic which were very helpful. I didn't like the stool softeners, but had to rely on them pretty regularly.

If you're willing to share more information about what your pain is from and which pain medications you take, those in this community will be able to communicate with you better and offer ideas and support. That includes me. I just signed a petition from NORML, which is a group actively working to have marijuana made legal at the Federal level. The use of Marijuana derivatives of CBD and THC has helped me and others withdraw from opioids for treating chronic pain, and therefore no longer need the laxatives. Please let me know how you feel about the possibility of replacing your current pain medication with marijuana. I personally was taking Tramadol 50 mg, which worked for my pain, but I wanted to be off it. CBD helped my withdrawal from the Tramadol.

I look forward to hearing from you.

Gailb
Volunteer Mentor

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@kadydash

When my doc told me I needed back surgery I had trouble finding any patient to talk to. Due to the privacy laws my surgeon could not connect me with any of his previous patients. It was frustrating. Once I had my surgery, I began keeping a diary with my notes on what to expect, what I needed at the hospital, what mobility tools would have helped, what exercises were most effective and so forth. I just launched this book on Amazon, and I it will be free next weekend (Sunday and Monday – July 9 and July 10). I want to give a shout here so people can bookmark the book at get it for free – I wish I had this information before my surgery! The book name is “Step by Step Back Surgery. A Recovery Guide: What your doctor can’t tell you” by Kady Dash.

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@kadydash when this privacy law first came out we nurses and Dr,s where totally against it for the reasons you stated .

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@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)

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@oregongirl I too had the procedure where they put some cement in my spine, I broke a vertabra in a fall on concrete stairs. It worked wonderfully initially but about two weeks after the procedure I slipped and in trying to not fall I wrenched my back. I think that must have effected the cement and perhaps dislodged it because it wasn't as good after that and now I have a big lump sticking out of my back. I joke that I have a nose growing out of my back, because that is how it looks. I don't hurt much except when I sit on a hard-backed chair, and when I try to sleep on my back. I haven't looked into getting it fixed because there is no way I would want another surgery unless it was absolutely necessary.
JK

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@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)

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@sandytoes14 That's a good thought. My nephew had terrible headaches and it took at least a month and multiple doctors to finally figure out that he was leaking spinal fluid. He had surgery and has been great ever since. His headaches were so severe that he was out of work most of the time. It was a difficult time for his whole family, very scary thinking he might need brain surgery, but the surgery he had to have is much more minor than brain surgery.
JK

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Gail, just curious, what benefit does THC provide?

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@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)

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@grandmar Most of my doctors are in MA and I live in NH and there is no problem with them calling in prescriptions to my drugstore up here, so perhaps it's a state by state thing.
JK

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@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

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@parus So pretty! I am a terrible gardener, I hate bugs and of course there are bugs out there, and worms. UGH. Most of my flowers are purchased in the grocery store. Here are some I purchased last week, for only $8!
JK

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@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

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@sandytoes14 I haven't seen him in awhile My niece when they got married was the last time she and her family live in Florida now I get pictures but I'm in California where my son and family are but lived in Pa.love the east coast.,all of it.

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@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

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Thanks I’ll get some

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@jakedduck1

Thanks for your question Leonard. I am giving you my personal opinion here, backed by other anecdotal information from others who use full marijuana with THC. I have tried smoked, vaped, topical, and edibles of marijuana. The topical cream when applied to my previously painful knees and legs really helped relieve most of my pain. However, continuous use would have cost me a ton of money since my pain was over a large part of my body. I decided to try edibles, and they made me so stoned (high) that I had a panic attack. I was told even the small amount I consumed in a one inch square of chocolate was too much for me. Then I tried smoking a couple of hits of marijuana cigarette, and not only did I choke, but again, I was stoned. I also tried vaping the tincture, and had the same result. I have decided that marijuana which naturally contains THC is too strong for me, and I don't like being high. As an older person (69) I need to be in control of my balance and my decision making, which I am not when I'm high.

When others, including my husband and myself use full marijuana, it is an excellent pain killer. That's why it helps people who are undergoing chemotherapy or have cancer pain. That's the important role of the THC in marijuana. It helps with pain, nausea, appetite, and anxiety for those who use it on a regular basis.

I much prefer CBD with mixture with .75 mg CBD and .25 mg THC. I use 2 servings of it sublingually. It reduces my anxiety and pain, without making me high. I know the FDC has approved a formation of CBD for use in 2 types of epilepsy. I'm sure approvals of more uses will be made in the near future. My grandson has Tourettes Syndrome and I have read that CBD research shows it is effective in reducing or eliminating the "tics" associated with Tourettes. No other medications over the years have proven effective for his tics. At 17, he could use the relief the CBD provides. He's been bullied since he was 6 years old due to the Tourettes. However, in spite of this he has grown to be a confident, kind, and courageous young man.

Let me know if this is the kind of information you are looking for. I also recommend watching (streaming, Roku, etc.) CNN's specials titled WEED with Dr. Sanjay Gupta. There are 4 specials so you can watch them by Googling it, or just watch the most recent one, WEED 4 with Dr. Sanjay Gupta. They are excellent and go over the research and results so far. Here is the link to how you can view this video:

cnnpressroom.blogs.cnn.com/2018/04/18/a-cnn-special-report-dr-sanjay-gupta-weed-pot-vs-pills/

See if you can also find, Dr. Gupta on " I'm doubling down on marijuana." It's very informative. I hope this information is helpful to you. Let me know.

Gailb
Volunteer Mentor

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