Chronic Back Pain for Years

My Dr left my pain clinic and they didn't have enough staff to see her pt we were all turned away. I called and called all kinds of clinics they all want to get you off the pain meds I'm like no way I can't do that. Then setting up a drug councline apt I felt like they were treating me like a drug addict. I never went back I went to my family practice dr and told him everything. He's great so he fills my scripts monthly. I havnt had as many problems as I seen mentioned in your post but I've lived my own night marish stuff my L5S1 disc slipped out further in nov causing Cauda equina syndrome (CES) after surgery I was the same. They say the nerves should heal and remember what they do but I live with a foley and all the issues I seem to have. Even now after surgery I'm still in so much pain. I thought some would subside but only way I get through the day is oxy.

Hello @jlfisher56, welcome to Connect. If you don't mind would you be willing to share a bit more about your chronic pain and back injuries? Are the back surgeries the primary cause of your chronic pain? You also mention failed fusions, would you tell us a bit more about what that means as far as more surgeries and the pain associated with a failed fusion? I've fused my ankle, so I have some understanding of that process (long & hard recovery). You mentioned you are looking for guidance, are you primarily looking for how other members cope with their chronic back pain?

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

@jlfisher56, you don't ever need to apologize for your posts on Connect! There is nothing wrong with being thorough. Yes, there are definitely bad days with some of my joints. My ankle, after being fused and the two year full recovery, is finally at a place that is mostly pain free. I too have had my right knee replaced, that recovery was not easy by any means, but at the very least there was physical therapy. Fusing is hard because there is mostly just a waiting period. I definitely am able to predict the weather with my right ankle as that still has end-stage arthritis and locks up pretty tight when the weather is about to change!

I would like to invite @nan57, @ladidy, @stumpy, @elltd, @ladytakash, @robertrm, @recoverychris, @IndianaScott, and @mickaela to this conversation as they have all had some sort of spinal fusion. I would also like to invite @jeriliz who has had a few spinal fusions and has experienced some of the frustrations and complications as you from their fusion.

@jlfisher56, while we wait for others to join the conversation, I would like to say thank you for your stating that you would like to help others. For all you have gone through, that is a kind thought. If you don't mind, have you discussed your desire to get off of pain medications with your medical provider? Have they offered any alternative therapies to try?

Hi, this is @robertrm. Love to join this. What do I need to do?

Hello @robertrm, if you are replying by email I suggest clicking on the VIEW & REPLY button and going to the full discussion so that you can read @jlfisher56 post. Thank you for your willingness to join this discussion and offer your insight!

Sorry to hear a story so similar to mine. While doing an internship in Chemical Dependence at a hospital, I also worked as a nursing assistant. I was making a hospital corner on a bed, sneezed and blew out a disc in my back. Surgery for repair at L5-S1 was the start. That was 1975. Since then there have had 17 back and neck surgeries. My lady says that I have the longest butt crack in the world.

I developed fibromyalgia in the 80's and autonomic peripheral neuropathy in the 00's. I've been in chronic pain for many years. Since the DEA put pressure on the FDA to make it more difficult for us to get opiods, I have had problems getting the one drug, morphine, that works for me. As a former Chemical Dependence counselor and inpatient and outpatient treatment director, I'm very aware of the dangers of misuse of medications. I've never overused any drugs.

If you take meds as prescribed, you won't get into problems. Naturopathic medications have not been effective, for me. The government doesn't tell that the number of suicides has increased among chronic pain suffers who can't get their medications. It's the people who abuse illegal substances that are addicted. Please don't disparage or denigrate your need for such medications. Use as needed.

you are so right mikee. I tell my doctor I don't know what I'd do without him. He allows me to have a "life". It's the difference between just sitting all day on a chair or in bed, not functioning or being able to do some ADL's, socialize and getting outside (maybe not everyday)... but function and feel "human".
I failed narcotics (do use MSO4) and use fentora buccal prn which is a godsend. If I could tolerate the fentanyl patch and not have the skin breakdown, I would have much better pain control.

I decrease my medications when I feel better and use it as he RX on bad days. WC the last 4 years has been taking me to court due to fentora (because the price keeps increasing). "They" don't look at ppl as an individual. One doctor that did an IME (never saw me and didn't have many of important notes/judges' opinions, i.e ...36 missing pages), stated the reason I can do this or that is b/c the narcotics make my "brain euphoric" that is why I feel better! None of my medicines make me high or euphoric. They just don't believe this. I was getting sick of trying to educate "lawyers" on chronic pain vs acute pain. That doctor even stated I probably even could surf or run a marathon. It was like the Twilight Zone! It is hard enough to ambulate 20 minutes and drive. I don't mean to complain but my goodness! AND I never did either when I was well.

Games. This was 1 1/2 yrs ago. So now they wanted a monetarily settlement (I am under an old ACT--WC if I can't work get it until I die) so they wanted to settle...or I had to be a telemarketer full-time. I could not do that. Each day is uncertain and as you know mickee, with the history you wrote, there are days better or worse than others and of uncertain duration. So I loved the terms...I am signing... (the judge said they had a stack of more jobs to interview), "I am of sound mind "and NOW "my mind is not AT all affected by any medication/s". It wasn't to begin with but, how they would try and push the issue by someone who never saw me.

Most people don't want to rely on medicine to function. I don't. I am so tired of WC, pain, and the "news/TV"...that everyone on an opioid is an addict! I can take decrease morphine on a good day (besides the meds for neuropathy,) and have no withdrawal. I can increase it when my pain is bad. Like I stated, MSO4 doesn't really help the cervical torticollis (neck deviation) and associated fascitis, fentora does (brings it down 2-3 points). The botox has stopped the daily migraines and has been a blessing. "We" just want to try to live a "life", looking for help to improve our quality.
Often ppl like us feel alone because of the physical consequences of the injury. Seeing people our age so active, living in their homes, traveling, etc, isolates us and adding insult is the attack on what helps our pain.

Then like you said about the govt., innocent ones caught in the crosshairs. In my county, it seems to be getting worse. Big cities are 30-45 minutes away but now their drugs are flowing in here. My son-in-law is a State Trooper and daughter an RN like me. The cases not broadcast to the locals are staggering. We are getting hit by drug addicts abusing and stealing them...plus the government making it harder for doctors to dispense them, some are closing their practice. That is the frightening part.

Well God bless you mikee; 17 surgeries wow. It is wonderful you have a supportive wife. My husband is deceased. My friends are wonderful and my daughter and family.
Hope to chat again soon. This is my first time on a "site". It does seem like you have a story of your own to tell and you have been through quite a lot. Maybe you can tell me ways you deal with your pain and what you have learned from the Mayo site. Do take care and thank you for replying. It was very encouraging to me.

Yes Justin I have tried all kinds of psychological therapies, mediation (do daily each am), physical therapy (each am), TENS unit (4x/day), tried other medications, creams, patches (non RX), shots of Kenalog plus additional medications added, ..what I am on now is "stabilizing" me. The botox to my neck is straightening the torticollis to some degree and at least no daily migraines from it. My insurance won't pay for acupuncture or a chiropractor. I won't use a pain pump or embedded nerve stimulator (would need 2) and already have arachnoiditis in the lumbar spine. I don't know what else to try. Where I live...there isn't much available.So, I try to look at the internet but have not found anything. The shots to the knots in my back were to be once a month x 6 months. The first set lasted 2 1/2 wks and the second mo., 2 wks, so the dr. stopped them. They should have lasted closer to 4 wks he stated. He had used needling in the hospital at first and it helped like I said, but didn't last. Sadly to say I have to travel out of county about 3 hr to any center that "might" do research in pain management.

My pain management/rehab doctor is well known and very good. (about 40 min. away)(none good in my county). He had spoken of a place I believe in NC one time, that could possibly help cases serious like mine but, it is very expensive. Also, doubtfully would Workers' Comp pay for it.

Just took my poor daughter for an MRI for the neck 10 yrs ago like I stated she was kicked in the neck by a psych patient. She had been doing 60% well for years but gradually worsening. This last year especially. She is scared because of all my surgeries and pain...now her neck has become so symptomatic and the pain is unrelenting. Her MRI today has her worried and frightened. Today I am glad surgeries changed so much since mine of 1999. Her C4 is herniated and the cord is compressed and a partial at C5. She has progressive arm and leg weakness and worsening pain, dizziness, cervical headaches, ocular pain, etc.
Tomorrow I am taking her for the brain MRI and pray it is fine. She is 37 yr old. I started when I was almost 36 and I know it is crossing her mind. Now I must be a "Mom" and stay positive and "push" this nursing staff. She went through what I did( years ago)today. Her MRI the dr said Sun was stat Mon. and the office said, FRIDAY!. In the meantime she is becoming weaker and having more pain (an RN also and knows),and the doctor calls and is aware. I called the office and got no where (only 3 working and have "things" to do). The dr is wonderful but the staff is something else (nonprofessional). My cousin, an RN, knew the MRI staff and got her in for 530 PM tonight (the STAT order) and because so late, the brain is at NOON tomorrow. The MRI staff spoke to the doctor and let him know the office didn't put the order through (we tried without being arrogant). Thank goodness my cousin like I said, knew the MRI technician. Who wants permanent damage when you can prevent it. This has been going on 10 yrs and so has her pain. Only recently has it become severe. She has been getting cervical botox to the neck 3 yrs and it no longer helps.
The reason many of us have chronic pain they say...is the PAIN was not taken care of for a long time...and continued. If you take care of the problem, you shouldn't have such severe, chronic pain,,,or so the theory states. She does not want her life taken from her and to live in pain. We are very strong people but it can be very tiring.
There still is a stigma associated with someone that has chronic pain and a judgement on how they treat it. The medical profession really needs a good education on it in medical school. There isn't enough.