Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

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.

@marield65

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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@marield65 Marie, don’t you hate that when you hit something and all you wrote is gone? That happened to me last night on a different post. I was too tired to recreate then but will have to today.
JK

@kadydash

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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@kadydash Kady, I guess I understand the privacy issue but I think someone on your doctor’s staff should ask patients who have undergone the same thing if they would mind sharing. I know I would be happy to if someone was going through the same issues.
JK

@kadydash

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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“Should have”. But it did not happen. I hear exactly the same thing from a number of other people in the reviews posted on my book. I am so glad I was able to help others! The book was #1 Best seller in Physical Impairments category for 30 hours! It felt great! Thank you for taking time to comment!

@kadydash

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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Lady is your book still available.?marie. Marield65

@kadydash

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 Yes. This forum does not allow posting of links, so you need search for it by name on Amazon. The book name is “Step by Step Back Surgery. A Recovery Guide: What your doctor can’t tell you” by Kady Dash.

@painwarrior

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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Maybe you should write a book, have you read the one by kadydash? I am reading it now. It is amazing how much we can learn from each other and what we each went through.
When ever I think I am in the clear, something else pops up that is not in the normal realm of things.
I know I am not unique, but why do I feel so different? The things that happened to me when I have back surgery or a knee replacement or rehab is always “different” from other people.
Things that happened to me, and the outcome are always a little different, more difficult or complex from other people.
I can go on and on with little stories and explain more but I don’t want anyone to think “what if it happened to them ” because like I said I might be unique in a weird way.
It is a good thing that I can keep my sense of humor after all that I went through. and I somehow believe that there is a reason why things happen.
I wonder!
Marield65

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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@jenapower, I’ve had two cervical surgeries, with a total of three fusions by two different surgeons, and my results were great. It’s been 20 years with no neck pain, but I am very careful about how I do anything that might injure it. My good fortune is having had the very best surgeon I could find. The first time I lived in Grand Rapids MI where medical care is fantastic. The second time was in a small hospital in FL where I lucked into a surgeon who had worked in Grand Rapids. That surgery took seven hours because new bone growth from the first fusion had grown about 8 inches down into the spinal canal and had to be removed slowly and carefully. Unfortunately that surgeon moved to MN, and my last lumbar surgery was a mess, is now considered failed back surgery and the reason for severe chronic pain. The surgeon makes all the difference! If you can’t go to someone in a big city with a great reputation, you’ll probably end up with after-surgery problems.

@painwarrior

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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From Marield65, as if the above wasn’t enough, I went for an MRI yesterday and I valet my car, went alone, had to be there by 4 pm, even though they were not going to take my until 4:30, got a jonnie on, and they could not find the key to my locker so I could not put my clothes and pocketbook anywhere and because I went alone I had no one else to hold my things. They called the janitor, his keys would not fit. They called the locksmith for the hospital and he was on vacation. So I had to wait until someone was done with their MRI so I could use their locker. Why was I upset? It was closing in on 5 o’clock and the valet service closes at 6. How would I get my car? I just made it and got my car at 5:55.
Now i have to see if I need more back surgery. Stay tuned!

Jess, Marield65 here, be persistent with Doctors. You probably haven’t found the right Dr. yet Keep looking and go for the tests they recommend. Sometimes the problem for your pain is not visible yet, but don’t ever give up. It took me a long time to find a Dr. that believed me and I almost had to prove my pain was real,but you have to jump through the hoops first and go to p.t., and etc. then when you have done all these things, then they believe you are serious. There is help out there, you probably haven’t found it yet,but it will come. I have been through the same things you are going through. I was persistent and never gave up. Please do the same.

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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Maxiesmom: Are you going to have another surgery? I am Marield65 and had 1 fusion and 4 more back surgeries and now he wants to do another fusion. Doesn’t a fusion weaken the other discs which is why once you have a fusion you will always have to have another one? I wish I knew then what I know now, but when you are in excruciating pain you do anything at the time to get relief. There seems like there’s no right way to do this. Does the Doctor really know what the best thing is for you? Marield65 Why was your last lumbar surgery a mess? What did you go in for, what kind of surgery? And what happened?

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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Marield65: I had my first back surgery 32 years ago. I had a bulging disc and one icy day I slipped, didn’t fall but twisted my spine in such a way that two vertebrae nipped off a chunk of disc and it got tangled in nerves. No CT scans or MRIs back then! After months of excruciating pain and useless treatments I finally connected with a great neurosurgeon who did a Myelogram and when he saw how bad it was he did the surgery the next day at 6 am so he could still be best man in his partner’s wedding at noon. Such excitement…it all happened so fast I didn’t have time to be afraid of my first surgery. After 30 years of no back pain, it got bad again because so much scar tissue and bone growth occurs that my spinal canal was packed in and crushing my spinal cord. The surgery to correct it went well but I did need two fusions. I had no pain for 6 months but then it got progressively worse until now I’m pretty disabled. The pain Dr calls it failed back surgery but so far tests show my spine looks ok, I’m thinking it’s a trapped nerve and may end up at Mayo.

I have also had two cervical spine surgeries, two fusions with the first one and one fusion with the second one. I was told at the time that the second surgery was necessary because of additional stress on my spine from the first surgery. Again, I had a fantastic surgeon which I believe makes all the difference. I also faithfully did neck strengthening exercises with a great physical therapist. I think if you have faith in your surgeon, you should have the fusion.done. To just let it go would cause more damage over time. Good luck! Let me know what you decide. Fran (Maxiesmom). fyi: Maxie is Maximillion, my white long-haired chihuahua.

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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Can I ask you how old you are? I will be 72 next week and when I wake up that day I will be free of pain. Well that is my birthday wish. A girl can dream,right? This is to @maxiesmom from @marield65.

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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To @maxiesmom from @marield65 the above email.

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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Hi Marield 65, I’m 75. My husband, my sister and I live together in Florida. My pain started about 1 1/2 years ago but I had them to help out so I could sit in my special chair or just stay in bed. Since then my husband has had three eye surgeries and is now totally blind. The gastroenterologist suspects he has liver cancer….will find out more on Friday. My sister had a stent put in and has been diagnosed with congestive heart failure. We are all walking-wounded! Our daughter and granddaughter have been coming weekly to help out but it’s over an hour drive for each of them and they have full-time jobs and their own health issues. My sister and I had planned to sell the house because paying others for all the yard upkeep plus a housecleaner and handyman is getting really hard, but with my husband’s failing health plus the blindness I worry a move will be too big an adjustment for him. It’s so hard to know what to do. Hugs, Fran

@jenapower

I’m amazingly frustrated right now, I have had all kinds of back issues and broken shoulders and surgery after surgery on it, but I recently decided I was just going to get off pain medication because I wanted to see where I was that and if I could do it without it. It seemed like it was getting better but my neck was hurting and I’ve had a headache since I stopped all the medication. It’s been over a month now and the headache is gotten worse. I’m basically bedbound by it.

Thank goodness one of my doctors did an MRI of my cervical spine which I got the results back from today. I can’t even rename all the problems but basically my neck is a mess, no wonder I have headaches and neck pain. After I got the MRI results, I called my m pain management doctors. I deal with one of them that gave me narcotics, the other one does not and my internal medicine doctor. All everybody could tell me was that no one was willing to give me anything for pain relief other than in the NSIDs and few muscle relaxers. Those didn’t do anything. I’ve been living on ice in bed.

They’re only suggestion was for me to immediately get in to see a neurosurgeon, last thing I wanted to do or here. Fortunately I got into someone good within the next couple days. All of a sudden I’m afraid again, and my pain management doctor said he was not going to give me any more pain medication ever, I was tough and I could handle it. He was so proud of me for getting off of all meds, he would not put me back on anything no matter what. Wow did I shoot myself in the foot. Now I’m faced with neck surgery, or some other therapy I have no idea about, or living with unworkable pain.

I know as I go on for the next few months if I stay off any medication the pain is supposed to diminish as the number of pain receptors I have diminishes. I truly don’t think that’s going to make the problems in my neck any better.

I am now afraid everyone’s gonna leave me without any alternative if my neck can’t be fixed or it looks like surgery and all I know about our neck surgery or back surgery it that most fail. Would sure love to hear from somebody that has had positive cervical surgery. All I ever seem to hear here are the failures of all spinal surgery. I’d love to hear from someone that had a positive outcome. Thank you for listening, Jennifer

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After hearing all you are going through, I shouldn’t complain at all. God Bless you and may He grant you the strength to endure.

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