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Central Sensitization Syndrome
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wildy posted:
Hi Dr P,[br>[br>I am currently a serving soldier and 4 years ago was injured whilst on duty. I had a prolapse of my L5/S1 disc and subsequently had a discectomy in Feb 08. All I had was a pain in my hamstring (sciatica) before the op but after the op I had terrible pain in my back and the sciatic pain had grown from my butt to my toes. Unfortunately that operation failed and then I had a spinal fusion in Jul 10, that unfortunately also failed. I then had a revision spinal fusion with the addition of a cage in Feb 12, guess what happened...yep you got it, that also failed. I was walking with a stick only for the sciatic pain and needed rest frequently but I was at leats walking. So, because I was not a fully fit soldier any more I was due for medical discharge in Dec 12. It wasn't a problem, I had a job to go to and I would have been getting my war pension.


Then 3 months ago I turned over in bed and my back cracked, I have never felt pain like it. I called an ambulance and was admitted to hospital, I had an MRI and a specialised nerve test. The results of the MRI showed that the operation was sound and the nerve tests came back normal. I should mention that I have had 4 epidurals, 1 before each of my ops over the 4 years for the sciatica and the latest one has seemed to have stopped the sciatica for now. Over the next 2 weeks I lost control of my bladder and could not stand, the pain in my back was excruciating, another week down the line and I had lost all control of my legs, I can feel them but cant move them. I am sending this message 3 months after I turned in bed and my bladder has returned to full function and I can wiggle my toes and ankles but still cannot move my legs. A spinal specialist diagnosed me with Central Sensitisation Syndrome. She said as there has been so much trauma to the base of my spine and after each of my operations I pushed maybe a little to hard to recover, my brain has taken over and stopped me using my legs as a defence mechanism. Is she right? Just a note but I have always had a strong mentality to be able to put mind over matter in most instances but this I can't control.[br>[br>What is the best treatment to able to give me a chance of rewiring my brain to get the use of my legs back? I'm on multiple pills and potions which helps with the pain but doesn't help the fact that I am in a wheel chair and have been for 3 weeks now. Help Please! I am currently in a Military Rehab centre but getting treated as though 'it's all my head!!!'. I hate that term.

I am not medically minded in the slightest so please be gentle with me.[br>[br>Thank you [br>[br>Wildy
11 Replies |Watch This Discussion | Report This| Share this:Central Sensitization SyndromeHi Dr P,[br&gt;[br&gt;I am currently a serving soldier and 4 years ago was injured whilst on duty. I had a prolapse of my L5/S1 disc and subsequently had a discectomy in Feb 08. All I had was a pain in my hamstring (sciatica) before the op but after the op I had terrible pain in my back and the sciatic pain had grown from my butt to my toes. Unfortunately that operation failed and then I had a spinal fusion in Jul 10, that unfortunately also failed. I then had a revision spinal fusion with the addition of a cage in Feb 12, guess what happened...yep you got it, that also failed. I was walking with a stick only for the sciatic pain and needed rest frequently but I was at leats walking. So, because I was not a fully fit soldier any more I was due for medical discharge in Dec 12. It wasn't a problem, I had a job to go to and I would have been getting my war pension. <br /><br /><br />Then 3 months ago I turned over in bed and my back cracked, I have never felt pain like it. I called an ambulance and was admitted to hospital, I had an MRI and a specialised nerve test. The results of the MRI showed that the operation was sound and the nerve tests came back normal. I should mention that I have had 4 epidurals, 1 before each of my ops over the 4 years for the sciatica and the latest one has seemed to have stopped the sciatica for now. Over the next 2 weeks I lost control of my bladder and could not stand, the pain in my back was excruciating, another week down the line and I had lost all control of my legs, I can feel them but cant move them. I am sending this message 3 months after I turned in bed and my bladder has returned to full function and I can wiggle my toes and ankles but still cannot move my legs. A spinal specialist diagnosed me with Central Sensitisation Syndrome. She said as there has been so much trauma to the base of my spine and after each of my operations I pushed maybe a little to hard to recover, my brain has taken over and stopped me using my legs as a defence mechanism. Is she right? Just a note but I have always had a strong mentality to be able to put mind over matter in most instances but this I can't control.[br&gt;[br&gt;What is the best treatment to able to give me a chance of rewiring my brain to get the use of my legs back? I'm on multiple pills and potions which helps with the pain but doesn't help the fact that I am in a wheel chair and have been for 3 weeks now. Help Please! I am currently in a Military Rehab centre but getting treated as though 'it's all my head!!!'. I hate that term. <br /><br />I am not medically minded in the slightest so please be gentle with me.[br&gt;[br&gt;Thank you [br&gt;[br&gt;Wildy
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Peter Abaci, MD responded:
I appreciate you willing to share this information about what you are working through. It might help to think of pain as something that affects many of the processing regions of the brain and leads to changes or remodelling of what goes on in these locations. I refer to this as the "pain matrix" in my book, and it helps to show why the presence of chronic pain can affect so many different things like movement, mood, decision making, and even blood pressure and heart rate. Effective pain rehabilitation requires working on all of these different regions so that the body can function better and feel better. Therefore, good pain rehab works requires a very comprehensive approach that works on the mind/body connection.

For everyone who has pain, there are physical factors as well psychological factors to consider as part of the recovery process. I think the military is becoming very aware of this and is trying to offer this type of comprehensive rehabilitation pain treatment.

The brain is very adaptable and this characteristic is called neural plasticity.
With the right treatment or program your brain can start to work with your body again in a way so that you can regain normal movements and functions. Sometimes this can be a slow gradual process.
Report This| Share this:Central Sensitization SyndromeI appreciate you willing to share this information about what you are working through. It might help to think of pain as something that affects many of the processing regions of the brain and leads to changes or remodelling of what goes on in these locations. I refer to this as the "pain matrix" in my book, and it helps to show why the presence of chronic pain can affect so many different things like movement, mood, decision making, and even blood pressure and heart rate. Effective pain rehabilitation requires working on all of these different regions so that the body can function better and feel better. Therefore, good pain rehab works requires a very comprehensive approach that works on the mind/body connection.<br /> <br />For everyone who has pain, there are physical factors as well psychological factors to consider as part of the recovery process. I think the military is becoming very aware of this and is trying to offer this type of comprehensive rehabilitation pain treatment. <br /> <br />The brain is very adaptable and this characteristic is called <i>neural plasticity</i>. <br />With the right treatment or program your brain can start to work with your body again in a way so that you can regain normal movements and functions. Sometimes this can be a slow gradual process.
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wildy replied to Peter Abaci, MD's response:
Thankyou Peter for your quick response.

I am in Rehab Centre now and hopefully things will start to change soon. I will repost a comment after the new year and let you know if things are progressing.

If there is anything you can think of that might help in the mean time I will be checking on this site.

Thankyou again for your time.
Report This| Share this:Central Sensitization SyndromeThankyou Peter for your quick response.<br /><br />I am in Rehab Centre now and hopefully things will start to change soon. I will repost a comment after the new year and let you know if things are progressing. <br /><br />If there is anything you can think of that might help in the mean time I will be checking on this site. <br /><br />Thankyou again for your time.
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annette030 responded:
Thank you for your military service.

Why do all vets hate it so much when told something is "all in my head." I don't know you at all, but maybe it is???? Maybe not???

I would seek out several opinions from qualified neurologists with spinal expertise. See what they say. Compare their opinions, and make your own. But be open to all their opinions. Also, talk to whatever other specialists are available to you, make a place for their opinions too.

You cannot go to war, or even be trained to go to war, and expect that nothing in your brain will change. We are not killers in our natural state, except under extreme circumstances. But the military must basically change that so that you will protect us and your brothers in the service at once, without even thinking about it. Then when they are finished with you, they do not claim responsibility for what they have created. They train you to serve through your own pain, mind over matter.

It is probably harder to get military people to accept mental health treatment than it is anyone else. It is OKAY if it is all in your head. It is also fine if it is not. Become "medically minded", study hard, and do your own research. You will figure this one out.

Take care, Annette
Report This| Share this:Central Sensitization SyndromeThank you for your military service.<br /><br />Why do all vets hate it so much when told something is "all in my head." I don't know you at all, but maybe it is???? Maybe not???<br /><br />I would seek out several opinions from qualified neurologists with spinal expertise. See what they say. Compare their opinions, and make your own. But be open to all their opinions. Also, talk to whatever other specialists are available to you, make a place for their opinions too.<br /><br />You cannot go to war, or even be trained to go to war, and expect that nothing in your brain will change. We are not killers in our natural state, except under extreme circumstances. But the military must basically change that so that you will protect us and your brothers in the service at once, without even thinking about it. Then when they are finished with you, they do not claim responsibility for what they have created. They train you to serve through your own pain, mind over matter. <br /><br />It is probably harder to get military people to accept mental health treatment than it is anyone else. It is OKAY if it is all in your head. It is also fine if it is not. Become "medically minded", study hard, and do your own research. You will figure this one out.<br /><br />Take care, Annette
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77grace responded:
Hi Wildy,
Sorry this has taken awhile to get to you!
I sent a messwage twice but it must not have gone through!
Anyway,
I am sorry for all you have had to go through at War and now all this!I 'm gratful to you too for your service!
I know how frustrating Pain is !I have several major issues too!I just know that we al need deach other because somddays it just does'nt seem like I can keep going,but My God pulls me through once more !I will keep you in my Prayers!
Good luck, Bless you,77grace
Report This| Share this:Central Sensitization SyndromeHi Wildy,<br />Sorry this has taken awhile to get to you!<br />I sent a messwage twice but it must not have gone through!<br />Anyway,<br />I am sorry for all you have had to go through at War and now all this!I 'm gratful to you too for your service!<br />I know how frustrating Pain is !I have several major issues too!I just know that we al need deach other because somddays it just does'nt seem like I can keep going,but My God pulls me through once more !I will keep you in my Prayers!<br />Good luck, Bless you,77grace
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popparick1962 responded:
Hello Wildy,
First of all, thank you for serving for our country! You are a true hero in my books.
Sorry to hear of your back problems. I had L5S1 fusion, 2 times, in 2008. They both have failed. I have been told I need to have another one but I refuse to let them cut on me again. The last back surgery really messed me up. I was wondering if they did an incision in your pubic region? If so, did you develope Retrograde Ejaculation? I did and now not only do I have to deal with relentless pain all of the time, loss of bladder control at times, hard to walk sometimes, I also have to deal with feeling less of a man for the rest of my life. I was told there is nothing anyone can do since the nerves have been damaged.
Once again, thank you for serving our country and hopefully you will get some kind of relief and your legs will work again for you soon.
Report This| Share this:Central Sensitization SyndromeHello Wildy,<br />First of all, thank you for serving for our country! You are a true hero in my books.<br />Sorry to hear of your back problems. I had L5S1 fusion, 2 times, in 2008. They both have failed. I have been told I need to have another one but I refuse to let them cut on me again. The last back surgery really messed me up. I was wondering if they did an incision in your pubic region? If so, did you develope Retrograde Ejaculation? I did and now not only do I have to deal with relentless pain all of the time, loss of bladder control at times, hard to walk sometimes, I also have to deal with feeling less of a man for the rest of my life. I was told there is nothing anyone can do since the nerves have been damaged.<br />Once again, thank you for serving our country and hopefully you will get some kind of relief and your legs will work again for you soon.
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Capson replied to popparick1962's response:
I'm a bit surprised by the first few replies you've received Wildly. Dr. Abaci, you didn't answer his questions in any direct fashion. Most notably, is it reasonable to think that he would have near paralysis due to pain centralization syndrome? Then the next poster made a sweeping generalization criticizing the mentality of vets and the government. I'm not a vet, but I'll tell you what, if I were confined to a wheelchair, felt excruciating pain, and couldn't move my legs, I would be a bit upset as well if I were told that there is nothing wrong with me! I don't have any concrete answers for you, but I do agree that you should get several medical opinions on this matter from doctors. You've been through the trials of war and now are facing another battle, and I feel for your pain. I urge you to keep searching and keep working. Please update this post when you get more information.
Report This| Share this:Central Sensitization SyndromeI'm a bit surprised by the first few replies you've received Wildly. Dr. Abaci, you didn't answer his questions in any direct fashion. Most notably, is it reasonable to think that he would have near paralysis due to pain centralization syndrome? Then the next poster made a sweeping generalization criticizing the mentality of vets and the government. I'm not a vet, but I'll tell you what, if I were confined to a wheelchair, felt excruciating pain, and couldn't move my legs, I would be a bit upset as well if I were told that there is nothing wrong with me! I don't have any concrete answers for you, but I do agree that you should get several medical opinions on this matter from doctors. You've been through the trials of war and now are facing another battle, and I feel for your pain. I urge you to keep searching and keep working. Please update this post when you get more information.
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upsadaisy responded:
Wildy,

I too want to thank you for your service. And I too am really indignant that you should be told that your pain is all in your head!

I have some experience with problems being "all in my head". I was not told that in so many words, but it was not too difficult to figure our what they meant. ADD, fibromyalgia, and pelvic pain were all things that were "all in my head". Well as I understand it brain chemistry does have something to do with the ADD and the fibromyalgia, doctors were refusing to believe that either one even existed. The pelvic pain was also real, and it took finally finding a doctor who was willing to figure it out to solve the problem. One even told me that I should just "calm down". That is not easy to do when you are having unexplained pain that no one is willing to figure out.

My opinion is that "all in your head" simply means "I don't know what to do but I am not going to admit."

Good luck!
Report This| Share this:Central Sensitization SyndromeWildy,<br /><br />I too want to thank you for your service. And I too am really indignant that you should be told that your pain is all in your head!<br /><br />I have some experience with problems being "all in my head". I was not told that in so many words, but it was not too difficult to figure our what they meant. ADD, fibromyalgia, and pelvic pain were all things that were "all in my head". Well as I understand it brain chemistry does have something to do with the ADD and the fibromyalgia, doctors were refusing to believe that either one even existed. The pelvic pain was also real, and it took finally finding a doctor who was willing to figure it out to solve the problem. One even told me that I should just "calm down". That is not easy to do when you are having unexplained pain that no one is willing to figure out. <br /><br />My opinion is that "all in your head" simply means "I don't know what to do but I am not going to admit."<br /><br />Good luck!
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bishoprm replied to Capson's response:
Wildy welcome home brother. Desert Shield/Storm US Navy 1986-1996. I can relate to the pain factor. I have lost 90% of my stomach and 60% of my esophagus and have a feeding tube in place to get nourishment and medications. After numerous prior surgeries and still facing more surgeries. I do not that PTSD does have some play in this mess. But, I have been living with chronic pain for more that 20 years, Plus COPD due to aspiration pneumonia. Have have C 4-5-6 fused. And have shots in my neck and back for part of the pain management regiment. I so see a psychiatrist, therapist and group. To help with the PTSD. The pain does not help depression nor PTSD. Keep the faith brother. And to all our brothers and sister Past and present thank you for your service and welcome home.
Report This| Share this:Central Sensitization SyndromeWildy welcome home brother. Desert Shield/Storm US Navy 1986-1996. I can relate to the pain factor. I have lost 90% of my stomach and 60% of my esophagus and have a feeding tube in place to get nourishment and medications. After numerous prior surgeries and still facing more surgeries. I do not that PTSD does have some play in this mess. But, I have been living with chronic pain for more that 20 years, Plus COPD due to aspiration pneumonia. Have have C 4-5-6 fused. And have shots in my neck and back for part of the pain management regiment. I so see a psychiatrist, therapist and group. To help with the PTSD. The pain does not help depression nor PTSD. Keep the faith brother. And to all our brothers and sister Past and present thank you for your service and welcome home.
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cweinbl responded:
Get another opinion from a spine surgeon. A spine surgeon is an orthopedic surgeon or a neurosurgeon who has completed a fellowship in spine surgery. The fellowship trained physicians only operate on or diagnose treatments for spinal problems. Compare that to an orthopedic surgeon who treats fractures, bone tumors and accident victims. Compare that to a neurosurgeon who divides her or his time among brain surgery, operating on nerves or the occasional spinal complaint.

A spine surgeon has had 3-4 years of specialized training at one of the few hospitals or universities that have a fellowship program. That is 3-4 years of training AFTER a residency and general practice. No physician on the planet is better trained or more experienced in helping patients with spine-related problems. These fellowship-trained spine surgeons can be found at or near teaching hospitals. Please take my word for this, because I've been dealing with the same problems as you have for the past 40 years. I will never again allow anyone to recommend treatment for my spine unless that person is a fellowship-trained spine surgeon. You can take her or his recommendation to the bank. These people are at the very top of the field of spine surgery. They use the latest surgical techniques and rehabilitaiton processes. They are light years more experienced that your run of the mill ortho or neurosurgeon. Nothing is more important than your health. So why trust it to anyone but the most experienced and talented physician? Right?
cweinbl
csw2@bex.net
Report This| Share this:Central Sensitization SyndromeGet another opinion from a spine surgeon. A spine surgeon is an orthopedic surgeon or a neurosurgeon who has completed a fellowship in spine surgery. The fellowship trained physicians only operate on or diagnose treatments for spinal problems. Compare that to an orthopedic surgeon who treats fractures, bone tumors and accident victims. Compare that to a neurosurgeon who divides her or his time among brain surgery, operating on nerves or the occasional spinal complaint. <br /> <br />A spine surgeon has had 3-4 years of specialized training at one of the few hospitals or universities that have a fellowship program. That is 3-4 years of training AFTER a residency and general practice. No physician on the planet is better trained or more experienced in helping patients with spine-related problems. These fellowship-trained spine surgeons can be found at or near teaching hospitals. Please take my word for this, because I've been dealing with the same problems as you have for the past 40 years. I will never again allow anyone to recommend treatment for my spine unless that person is a fellowship-trained spine surgeon. You can take her or his recommendation to the bank. These people are at the very top of the field of spine surgery. They use the latest surgical techniques and rehabilitaiton processes. They are light years more experienced that your run of the mill ortho or neurosurgeon. Nothing is more important than your health. So why trust it to anyone but the most experienced and talented physician? Right?
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catalpa replied to cweinbl's response:
I have been living with chronic low back pain for over ten years now. I have a bulging and herniated disc at the L5/S1 area and now arthritis. I can't sleep for more than a few hours at a time and walk around in a brain fog from exhaustion due to pain. I've been to chiropractors/ a neurosurgeon /and in pain management over the years. The neurosurgeon just wants an MRI dropped off and then says there's nothing he can do. The chiropractors want to twist and crack my back (I couldn't get out of there fast enough) and my pain management doctor is the only reason I don't jump off a bridge some days. I can't believe I've never heard of a spine surgeon like you mentioned here. I hope I can find a doctor like this in Florida where I live. I made the mistake of trying prolotherapy shots which just increased my pain and because of that became very leery of letting anyone go near my back. I turned down steroid injections after talking to so many people that say it was just a temporary help and hearing that long term injections can cause more damage. I guess I will try calling the University of South Florida and check around for such a doctor. All I know is that living in pain is the worse and that people who do not experience it themselves have no clue. It is not in your head wildy and I sympathize with you and pray that maybe something like stem cell therapy will be our answer soon.
Report This| Share this:Central Sensitization SyndromeI have been living with chronic low back pain for over ten years now. I have a bulging and herniated disc at the L5/S1 area and now arthritis. I can't sleep for more than a few hours at a time and walk around in a brain fog from exhaustion due to pain. I've been to chiropractors/ a neurosurgeon /and in pain management over the years. The neurosurgeon just wants an MRI dropped off and then says there's nothing he can do. The chiropractors want to twist and crack my back (I couldn't get out of there fast enough) and my pain management doctor is the only reason I don't jump off a bridge some days. I can't believe I've never heard of a spine surgeon like you mentioned here. I hope I can find a doctor like this in Florida where I live. I made the mistake of trying prolotherapy shots which just increased my pain and because of that became very leery of letting anyone go near my back. I turned down steroid injections after talking to so many people that say it was just a temporary help and hearing that long term injections can cause more damage. I guess I will try calling the University of South Florida and check around for such a doctor. All I know is that living in pain is the worse and that people who do not experience it themselves have no clue. It is not in your head wildy and I sympathize with you and pray that maybe something like stem cell therapy will be our answer soon.
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catalpa replied to catalpa's response:
P.S. Thank you cweinbl for the most helpful post.
Report This| Share this:Central Sensitization SyndromeP.S. Thank you cweinbl for the most helpful post.
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