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Chronic Back Pain for Years

Spine Health | Last Active: Nov 21, 2021 | Replies (644)

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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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Replies to "Thank you Justin and I gladly will share my story if it can help anyone. It..."

Edda Glad you got some phyllium I take the pill form plus stool softener and sometimes eat a dried plum at night , even doing all that , I sometimes have to drink couple of Tbs of milk of magnesia if I get constipated . I also have a prescription for linzess it’s for constipation also , although it works sometimes and sometimes it doesn’t. If I didn’t have to take these pain pills I’m sure I’d be normal . Judy

@jfsherley I unfortunately have the opposite problem from the immunosuppressants. The preferred medication is metamucil but that did not work for me. Imodium helps a little but that is not one they like you to take on a regular basis. I have a message in on the portal to ask about that because without it, things get bad.
JK

@contendandwell. When I was working in hospital one thing Dr.would tell us start a BRAT diet Banana,rice,applesauce and dry toast also just water but this worked most times I don't know in your case but just a suggestion

@jfsherley ,
Have you been checked for allergens, i.e. wheat? Wheat can give you the problem. Your problem deprives your system of the nutrients in your food.
I had the problem you cite for a really long time and went looking for causes and the first to pop up was that wheat can cause the problem. I had emended pain that did not stop, and even when I relieved the problem with a visit to the restroom I had the peristalsis acting up. So, when I learned wheat can cause this problem I went cold turkey and never since have imbibed in wheat. If I accidently ingest some the symptoms immediately return.

I hope for your health to improve very soon.

@lioness @jfsherley I think the BRAT diet is meant to be short-term and I need a long-term solution. The BRAT diet really is not nutrient rich overall.
The wheat allergy possibility has me intrigued. Many people are jumping on the gluten-free bandwagon these days. I have never had a problem but maybe these immunosuppressants have caused a sensitivity. I will definitely have to look into that possibility, and check out what things have gluten in them.
Thanks to both of you for the ideas. I did actually do BRAT for a couple of days when things got quite severe.
JK

I took your advise and changed the psyllium to a pillform and together with stoolsoftener and ducalex it should be better. I am also take magnesium, if necessary. Never thought, I of all people, have that problem. So thank you, for your advise. Edda

@edda,
You might also add some ground flax seed if you eat oatmeal. The flax seed helps as well.

It is good you feel confident enough to change what you take to help your own body perform optimally.

Eileena

@contentandwell
Don't "jump" on the GF bandwagon. Just omit the wheat for a few days and see if it helps your health.

Wheat is different since 1952 when they began changing it so they could produce more at a time. They made it have more glutens so that bread making would be speeded up so they could make as much $$$$ as possible with the least outlay of costs. However, this has harmed many of us. In Europe their wheat is still like the wheat prior to 1952 and though there are those which problems the number is far less than here in the US.

Take care,
Eileena

@eileena I know I have felt better not eating gluten. I eliminated thus due to it causing inflammation. I have fibromyalgia and flax seed does not work for me. We are all so different. In Europe they do not use GMO's. Seems some countries needed to do something to feed the masses as well as line their pockets by harming others. Eating healthy is a challenge and can also be expensive. All I know is there are foods that increase my overall pain. I have been off of gluten/sugar for so long I can tell immediately if I eat something w/ either one. Also refined sugar now tastes bitter.
One more thing-this choice in eating can lead to being excluded from nearly everything. Some folks just do not understand others not being like they are...

@eileena Thanks, that's interesting info.
I did not plan to jump on that bandwagon all at once, but I do plan to try to cut back on gluten. Yesterday was a high gluten though, and I had no more problems than usual, actually if anything I had less of a problem!
I figure anything is worth a try though.
JK