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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
Replies to "Thank you Justin and I gladly will share my story if it can help anyone. It..."
Hi @eileena. When you say "light touch type of Chiropractor" Is the type of care you use called Reiki? Here is a description-
https://dahlc.mayoclinic.org/2015/12/29/9-facts-about-reiki/
I've heard of this but never had it done.
Update Justin. Still no change with doctors. Just had an MRI of the brain and cervical as I have been having a lot of sensory deficits on my left side, increased muscle spasms, and having migraines again. Botox last Thursday was mainly left cervical muscles and base of skull. My neurologist decided on the MRI so I had it yesterday. My left leg has been falling asleep that it feels as if I have no feeling in it. Can take 5 minutes to be able to put weight on. Also, the normal decreased sensation on the left has become so pronounced, I didn\'t even feel the Imitrex shot in the left thigh the 3 times I had injected it. This is not my normal. At times when my neck muscles are tight, I can have more nerve symptoms because the nerve sheath \"pinches\" the nerve and it /they can\'t glide\'slide, causing decrease sensation/symptoms that do get better and abate. This time it hasn\'t and only has gotten worse especially the last two months.
I have had three cervical disc fusions in my neck. I have been left with chronic pain. I take Tramadol, Tzanidine (muscle relaxer), and Lyrica daily. I am wanting to go off the Lyrica as it makes my brain fuzzy and I can't remember a lot. I am on 600 mg per day and have gone down to 400. As I wean off it, pain has kicked up. I am wondering if I shouldn't go off it completely. I had Botox injections (30) 6 weeks ago and the pain from surrounding muscles spasming that did not receive a Botox shot are just now starting to subside and I can hold my head up again. The quality of life with chronic pain is very limited... I am constantly looking for something that will help as I am only 48 and have the rest of my life to battle this pain. Does anyone know of an alternative?
@robin33330 ...I am not practicing medicine w/o a license...not a Dr or nurse but have lived w chronic pain for Apr 6 years? Anywho...for Tramadol to provide any relief the dosage prescribed made me SO sick. Do you go for pain mgmt or is this your PCP. Maybe you should ask for a referral to reputable pain mgmt clinic? Doesn't sound like the Tramadol is helping. May need to take it up a notch. Hope I helped. Everyone in this group is here to help you and offer advice plus their own stories, trials and tribulations!
robin33330,
One day at work when I was suffering from nerve pain from the pinched radial nerve coming from my neck I asked a coworker for some Tylenol. She hauls out this bottle of an NSAID that had B-vitamins manufactured into the pills. I was really amazed by how much better I felt.
Thiamin, Pyridoxine(B6), and Cyanocobalamin(B12) So I went to the store and got a B-100 complex and the next time I needed some pain reliever I took the Tylenol and the B-100 at the same time. The B-100 has more B vitamins than just the 3 that pill contained.
I cannot take Tramadol as it upsets my stomach among other things. Ketoprophin is another one that hurt my stomach, so that is out as well.
B Complex, as far as I know, will not harm you. But, for me it was the coupling of the 2 together (NSAID and B complex) that really brought relief.
I hope this helps you. Pain is as bad as visiting a haunted house.
Eileena
Jamie Olson
No. My chiropractor just takes it easy, does not try to force the adjustment. If with a gentle movement it does not move she can and does use some massage, but unlike the one I had used for a few years, she does not try over and over again to snap stuff back into place. Jerry was rough and may have contributed to the arthritis problem I suffer from.
@robin33330
I am so sorry you are having such issues that it has interfered with your quality of life. Although I am not as young as you, I am facing that, too.
I am not a medical expert, but I'd like to tell you some of the things I have done, experienced or have been told that might help you.
I am 63 years old and I've been experiencing chronic pain for over 40 years, in one form or another. My issues began with TMJ and Fibromyalgia. Once the Fibro began, my body pains began. I WAS also morbidly obese. I am on Medicare disability and Blue Cross/Blue Shield PPO.
I've been seeing a pain specialist for many years at the recommendation of my orthopedist who was managing my knee pains with injections of Synvex. When I the shots no longer worked and other pains started, she suggested seeing a pain specialist. She had one in mind. Long story short, I went to 5 pain docs before I found someone who was able to help me.
When I moved to Florida, I had a recommendation for a pain doc. I tried him but he did not help. I took matters into my own hands and did lots of research. I needed someone who would accept my Medicare and BC/BS. I found him but he was approx. 1 1/2 hours away. He gave me mostly lumbar injections but also treated my cervical pain when they began. He worked wonders with my lumbar pain. I would get anywhere between 5-12 weeks relief (as long as I watched myself). I've had facet injections, steroid injections and radio ablation (cauterizing nerve ends). All this worked for the last 4 years until about 4 months ago. Nothing helped my cervical or lumbar spine.
Other things I've done:
1. lost 80 pounds so that did help.
2. I've done PT (both aquatic and land).
3 Chiropractor
4. Therapeutic massage
5. Accupuncture with cupping
Most of these things worked for a given amount of time. When everything stopped working about 4 months ago, I opted to go see a neurosurgeon. We decided to do my cervical spine first since I was getting very bad headaches every morning that woke me up. My surgeon prefers to replace effected discs with artificial ones. He said that with a fusion, the weight impacts the lower discs and have a domino effect that would require more surgery. Not if, but when. So about 14 weeks ago, I had 5/6 replaced. I did very well and healed so quickly that by week 6 I was in PT. However, my lumbar was still an issue.
I feel twice in 2 weeks. The second one, although it did not do anything to the new discs, it irritated the nerves in my neck. I just started getting headaches, again. I will discuss this with the pain doc in a couple of weeks. I am now working on my lumbar 3/4 discs. I am back in PT to try to make my core stronger. I will have surgery on my lumbar spine for 5/6. There are 2 techniques. I will know which one after I finish with PT and I take a special kind of an xray.
Sorry this is so long, but I wanted to share with you the process and to let you know that 'one size fits all' does not work. Each of us are different. Different meds, surgeries, PT, exercise, etc. works differently on each person. You need to find what will work for you. It is really a good idea to find a good pain doc. Do YOUR OWN RESEARCH. Once you find a pain doc, call them to see if they accept your insurance. Often, lists provided by your insurance company are not complete. That is why I suggest you do your own research.
I hope this helps you. BTW......I also lost 80 pounds which has helped a lot.
Best of Luck!!!!
Ronnie (GRANDMAr)
@jlfisher56, I'm so sorry for all you've been through. I can relate to people in the medical field telling me what my "pain" is and what I'm feeling. Luckily I live in an area with a large number of doctors so I've just changed to them - one at a time. I've been on Gabapentin (Neurontin) for many years. It was given to me for the pain caused by Peripheral Neuropathy by a Neurologist. But it doesn't help the back pain very much. You mentioned TENS. I've seen this before. When you feel like it, would you please let me know what is and what it's supposed to do? But only when you feel like it. I truly wish you luck in your search for relief. Take care. @cognac
Hi Cognac,
Sorry I have been off the board for awhile. The TENS unit is a modulated form of electrical stimulation in various wave forms. You can manage the depth of the sensation (current) and how the type wave pattern. The current goes through gel patches. I use two on each side of my neck/upper back and the treatment can last 30-90 minutes, whatever you set it at.
A new type of TENS just came out I was reading about (I am sure expensive) that is helping us with chronic pain and off opiods; the waveform is deeper and gentle but relief lasts up to 24-72 hours before another session. I'd have to dig up my research to find it. My TENS isn't like that. The treatment relief lasts maybe 2 hours but works.
Connect
Until now I had never heard of enkephalins. Looked it up on EncyclopediaBritanica.com. Very interesting. I think Russian TENs may be what my PT uses. I looked it up on start page.com and the unit I saw lots very similar to what I have had used on me in Chiropractic offices and at my PT's clinic. My PT uses ice and stem after the session is done for my shoulder.