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← Return to Chronic Back Pain for Years
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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..."
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.
Hosta here. I would like to join this conversation. My name is Eve. I to have been thru so much with my spine. I had surgery when I was just 19 years old for a herniated lumbar disc. My back problem continued. Another surgery for herniated lumbar disc when I was 32. Then I had kyphoplasty for compression fracture at T7. I had a pain stimulator put in (didn't help at all) Later I fell was told I had internal contusions and would take time to heal. I got to where I couldn't breath. Then had a chest x-ray and found out I had three compression fractures at T3,4,5. By the time I got the referral to see the surgeon, I had to have the stimulator removed (hadn't used for over 2 years) before I had a MRI. Then was told the fractures had healed wrong and that there was nothing could be done, and was also told I had fractures in the lumbar area also. I have had so many injections I have lost count. Now I am scheduled for the Medial Branch Nerve Blocks. One will be done on 7/3 and another on 8/18 in the cervical area. I have so much pain in the upper back and neck when I use my arms. I just don't know any more. I just want some relief from the pain. I have been on pain medications that don't help that much with the pain, just make me sleepy. I have things I want to do and don't want to sleep all the time. Help!!
Hi Hosta, this is Marield65. I had a nerve block to my lower back (not sure what discs) and it worked for awhile and I felt great But i had multiple problems with my back and many surgeries and shots after that. But it did give me a reprieve. Now I have to go back for shots because my L5 is pinching a nerve going down my leg and don the line I have to have another fusion of L3 to 4&5. I've had pain off and on for 15 years and it is running and ruining my life. I live for my family. I do have good days but then I pay dearly for it with the pain. But then there is always tomorrow.
Hello Marield65, We sure don't know what tomorrow will bring, do we? I have been told there is to much damage to take care of. I don't want to live on pain medication especially opioids. I will try almost anything. I will have the second of the Medial Branch Nerve Blocks on 8/18/17. I pray that it will do as much good as the first ones did. I start out the day not to bad, but as the day goes on, it gets worse, I'm just so tired all the time. I have put up with this for most of 61 years. But when I see what some of the others post, and see others in doctors offices, I guess I'm not so bad off. There is so much I still want to do! God willing, I will get to do some of it. Thanks for your feedback
Hosta, Marie here. You are right, we don't know what tomorrow will bring. I'm hoping tomorrow will bring me some relief from this virus bug I have had for 5 days on and off. My back hasn't hurt for the days I have been ill. Then again I haven't done anything. I will feel fine,do something and then get so weak I have to go back on the couch. And the weather is so beautiful here. 80's no humidity and I Don't have the energy to go sit on the deck.
Can't catch a break. I am going to sign off for now because I can't stand my own whining. I hope everything works out well for you.
Joan, I read your letter and learned so much. I have had problems for years with my c1-3 disks in the neck, caused by arthritis build up material and a car accident.
What was so interesting for me was the facts about the stomach and colon muscles. I have so much pain there, that I went to the ER, but they said, it is caused by the pain meds, also the terrible headaches. So I am trying to wean off the opoiods slowly.
But it so terrible to incur that pain, and I hope, they are right about it, caused by the meds.
I also had an open brain surgery three years ago, after I complained about headaches. It was serious and I was lucky.
Nobody, but my sweet husband understands, what is going on with me.
Sorry I haven't been on in a while. I have tried a great chiropractor. Trained in Iraq and Afghanistan Troops keeping them from having surgery until it became to bad that they needed it. He is almost 40 yrs old and wonderful. I was making remarked progress until I moved into a new apartment in my HighRise. Even though I spaced out the boxing of items, maintenance moved everything and my daughter put most things away,,,I still needed a lot of things to do on my own. My pain was often a "10" and it set me back so much.My cervical fusion was so symptomatic (the dystonia) that it kept falling down on the left the only relief was a soft collar. Rest was the answer. Even steady 20 minutes physically work flair it up as of 1 week ago. December 29th had my chiropractor (didn't go in 1 month---weather and extreme pain), Today I must say I feel I am starting to round the corner. My plan was to gradually decrease my narcotics. It seems though, any sustained activity in my life will create this. It has been like this for years. Had prayed though with help from chiropractor, releasing all the tight knots I have had for years, it would make a difference? Maybe? My problem that scares me is my wonderful pain doctor decided to retire because of all the legal laws concerning narcotics. They are tying the hands of doctors so much. A "new" doctor I went to see with a nurse from my hospital for support was a waste. He had his mind made up ahead of time. All he uses are anti-seizure medications. They are also full of terrible side effects of which he thinks are harmless. As a former nurse educator, this man's knowledge was sadly pathetic, lacking, and back into the dark ages. I thought of the time when people had fibromyalgia and no tests demonstrated what it was and the doctors told all these poor people it was in their heads. Now scientifically, they have made a lot of headway into this. When I told him the serious side effects for instance of neurontin, he looked surprised at me. 2009 the FDA came out with an alert in some it causes suicide and in rats cancer (?people). Also, the side effects are as bad as morphine. On the streets it is sold illegally too. One can easily overdose on it. This young doctor told me no veteran is on narcotics as it causes hyperalgesia (heightened pain) and they are only on seizure meds. I have read many were using street heroin because couldn't get into VA and when did that usage went down. I asked my doctor who was shocked as he trained with active and vets. He stated half of them used narcotics! I have had so many complications and surgeries from my initial accident in 1992. It is a shame some of these newly trained doctors are poorly educated on chronic pain again and also tell you what your "pain" is and what you are feeling. So disgusting like it was so many years ago! Who wants a life like ours to begin with and we would like to be able to function and have some quality of life.I have had so many back procedures, psychiatric modalities to use, different medications-patches-creams, TENS, physical therapies, and my daily exercise programs I do. It is exhausting just trying to distract your body from the pain and live a full life as much as possible. Then you get a doctor who tells me, a sensitive area is because of my narcotic! My chiropractor again was shocked because my back is full of knots and muscles on top of muscles that he is separating with a special device. I told him this "doctor" never even had me in a gown or felt my back just the base of my neck and SI's. Best to you. Will try to be more on forums again. Joan
Sorry to hear of your pain. I found a great chiropractor not far from my home in a place called Bastyr University Clinic. They teach Chiropractic there along with other alternative medical remedy based (including herbals and homeopathic) methods. She is a light touch type of chiropractor who gently makes corrections. With other parts of your body involved it is probably not simply your neck. A big part of my last problem stemmed from a fall onto my left elbow resulting in a bad tear to 4 tendons of the muscles that are the girdle surrounding the scapula. I have suffered with TMJ that made me think I had something called Trigeminal Nerve problems. I still have ringing in my left ear and have a slight hearing loss at the 6000 frequency as shown by audiograms taken after the fall. I have also had six months of PT to strengthen the muscles following the surgery to correct the tear.
What I am attempting to say is that cervical problems are not necessarily all located in your neck, but can stem from the surrounding areas including your shoulders. Be sure to look at your entire upper trunk muscular system and your nerves as well as your tendons and ligaments.
I hope you are able to get some help as it is not only painful, but debilitating as well and opioids are not the entire answer. Maybe someone can simply give you some very gentle massage to keep your neck and upper back free moving? I, like most other humans, have suffered from pain and don't really like to take the opioids. I have to take magnesium when taking opioids to keep from bowel lock up.
I do thank you for your advice. That is why I like this chiropractor. He does the massage, Russian TENs to stimulate enkephalins which last longer than our endorphins, and heat of which I do exercises with/and without his assistance (iso).
My cervical is extensive fusion and I have cervical dystonia (deviated to the left) The trapezius is very painful as well as all the muscle attacked to the skull. Used to give me daily migraines that caused nausea and often vomiting. My lumbar fusion is extensive from L3-S1 and I have scarring into the spinal canal (arachnoiditis).The pinched muscles keep the nerve sheaths from allowing the nerves to glide causing pain.That is what I like with this doctor.
My (RT) knee and (LT) hip are replaced so I am limited in some walking and things I would like to do and be more mobile. I try to do the exercises for core strength and my chiropractor states heat is the best to rid toxins. He does and I have learned to do myofascial release. Not easy to do on your own back but helps.
My problems started in July 1992 and I was paralyzed from the waist down from a cervical cord compression and given the wrong treatment. That is why besides the failed back fusions, I was left with complications. Topamax helps me. Not as bad a Neurontin but all meds have their use and side effects. Neurontin is very constipating like narcotics.
I was blessed to have the "Pioneer" of back surgeons in 1994 who did my first fusions and saw my misdiagnoses. I am not a big person for medications but when nothing else works, low dosage of certain agents to start should be tried. Even pain patches of Lidoderm, Teracin i.e. It is just knowing after more than 30 years of being a medical professional ( professional RN) and a former instructor, having some young doctor "tell" a patient how, what, and why they feel what they do is totally wrong. It is going back to the old days when I took care of those poor suffering patients. I don't want to be one of them and I am afraid many chronic pain people are going to be because of all the new opioid laws.
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@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?