jlfisher56
@jlfisher56
@jlfisher56
Posts: 64
Joined: May 02, 2017
Chronic Back Pain for Years
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.
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hosta, Eve
@hosta
@hosta
Posts: 117
Joined: Aug 09, 2016
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
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!!
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KadyDash
@kadydash
@kadydash
Posts: 3
Joined: Jul 03, 2017
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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Marield65. Marie
@marield65
@marield65
Posts: 147
Joined: Jul 11, 2017
At first I had to look at your name because I thought at first I wrote your letter. I am 71 and have been in chronic pain for years. Mainly with my back.
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robeaver
@robeaver
@robeaver
Posts: 3
Joined: Sep 20, 2016
Marield65. Marie
@marield65
@marield65
Posts: 147
Joined: Jul 11, 2017
I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie
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painwarrior
@painwarrior
@painwarrior
Posts: 27
Joined: Mar 11, 2016
Hi jlfisher56, I’m Juliann. I certainly understand your frustration. I am 52 years old and have been in since I was 16. I have had 7 spine surgeries with extensive fusion, rods, and screws in both my neck and lower back. I’ve also had 23 surgeries overall. I use a Fentanyl patch for my chronic pain. It really helps. It keeps me from having to take my morphine on a daily basis. Now I only need my morphine about once a month, which is amazing for me. I also take Robaxin, a muscle relaxer, for all the leg cramps I get. My story is very long; my therapist thinks I should write a book about my 37-year journey in pain. I’ve had some strange and really horrible experiences with doctors over the years. Hang in there, once you get on the right medication, it makes a world of difference.
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painwarrior
@painwarrior
@painwarrior
Posts: 27
Joined: Mar 11, 2016
I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie
Hi Marie, I’m Juliann. Your words, “all I know is pain, and how it has robbed my life,” really struck a chord with me. I’ve been in pain for 37 years, and suffer from treatment resistant depression and PTSD. I’ve been on anti-depressants most of my life, and until lately, they did nothing for me. But after getting on the right medication and getting a part-time job, I’m doing much better. I still struggle with how pain and doctors and robbed my life from me. I do see a therapist once a month and it helps a lot. I do use a Fentanyl patch for my pain, maybe it would help you too. Please hang in there, life can get better.
jess1313
@jess1313
@jess1313
Posts: 3
Joined: Jul 11, 2017
hi my name is jessie i had lumbar fusion 1999 and been in pain since did everything possible i csnt tske it anymore im alone no one to care for me
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Marield65. Marie
@marield65
@marield65
Posts: 147
Joined: Jul 11, 2017
Hi to my friends Juliann,robeaver, Jessie. My name isMarie and I already met Juliann. I want to tell Jessie that I am your friend. You are not alone, now you have this group to give you support and hope.
I have been there. I am a young 71 year old and whatever you or some one else had, I had it. I think I was born under a black cloud but then I think of what I do have in my life and count my blessings.
Eventually I will tell more about myself but right now I think you need some positive attention.
Things will not always be this bad. Tell me something about your self and what you do to occupy your time. You can’t spend the day thinking about your pain because that will make it worse. Who do you have in your life that you can talk to? And you can always write to us.
When you are down, open your door and smell the air. It will always be new and fresh and embrace the new and take one day at a time. Don’t even think about tomorrow. “Unless you have a Dr.s appointment ” ha ha don’t forget that.
Talk to me, and thanks for joining the group, it will be your family. I am a newbie also. I joined 1 week ago and I have learned so much.
I hope we can help you and you have to do your part and help us get to know you and your pain.
Marie (marield65)
jenapower
@jenapower
@jenapower
Posts: 204
Joined: Feb 21, 2017
hi my name is jessie i had lumbar fusion 1999 and been in pain since did everything possible i csnt tske it anymore im alone no one to care for me
Jessie, I understand it’s very lonely be having pain. I do have family but they got really sick of dealing with it. Then I end up feeling really guilty. I’m sorry that you’re by yourself I hope that you can find someone to talk to and be friends with that might be kind enough to help you. Even when you do have people around, it’s still a very lonely and isolating.
Marield65. Marie
@marield65
@marield65
Posts: 147
Joined: Jul 11, 2017
I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie
I want to say a quick hello to you and I have been on antidepressants for 45 years. The meds have been improving all the time, thank God.
What part of your body do you put your patch and can you go swimming with it on?
You will see my reply down the bottom to Jessie.
GailBL, Volunteer Mentor
@gailb
@gailb
Posts: 757
Joined: Jan 19, 2017
@jess1313. I hear the desperation in your post. Please let us know more about your situation and what medications you are taking. Are you seeing a doctor now, and what is your diagnosis. There are many things that can help with pain, perhaps you will find both information on some alternatives to what you have tried, and some comraderie here. You say you are alone with no one to care for you. What is your age? You may be able to find assistance through Medicare or another way. There are many resources on this site, and many others who have had experiences similar to yours and can maybe give you new ideas. If nothing else, we are here to hear you and try to help you cope with your reality. Don’t give up! Help us understand your situation. Gail B Ledesma
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jess1313
@jess1313
@jess1313
Posts: 3
Joined: Jul 11, 2017
hi ive been javing chronic back pain for 18 years after my surgery and seems to be getting worse by age i have no life ive isolated myself habe depression and anxiety now sometimes i evan get crazy thought to harm myself but im not taking the coward way out my son needs me miight have been different if i didnt have my son but why dont dr understand tjeres a reason for pain not just keep giving painkillers and tell u to deal with it im tired and drained
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Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 9153
Joined: Jul 23, 2014
hi ive been javing chronic back pain for 18 years after my surgery and seems to be getting worse by age i have no life ive isolated myself habe depression and anxiety now sometimes i evan get crazy thought to harm myself but im not taking the coward way out my son needs me miight have been different if i didnt have my son but why dont dr understand tjeres a reason for pain not just keep giving painkillers and tell u to deal with it im tired and drained
Hi @jess1313, welcome to Connect.
I moved your message to this existing discussion about chronic back pain. Like the members you’ve already met here, many people talk about constant pain affecting their mental health and social life. You notice that several members who are active in the Chronic Pain group also participate in the Mental Health group (https://connect.mayoclinic.org/group/mental-health/). I invite you to follow and take part in both groups.
@sandytoes14
@robeaver That is wonderful to be able to do Hot Yoga. When you first joined us on Connect, you mentioned you got epidurals with a “cocktail of freezing and cortisone.” Can you explain what they do to freeze a bit more. I’m very familiar with epidurals, just not the freezing part.
Jen
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