Hi to our fellow GN's, as a long term (12 years) casualty of dealing with chronic pain, I feel somewhat qualified to offer help and support to others with similar issues. I have endured some 11 surgical procedures (including removal of my right kidney, which the pathology showed a perfectly good kidney was removed for nothing) and have visited 14 specialists plus tried all the various alternative treatments such as acupuncture, massage, meditation etc, I still live in pain. I have found a most effective method is management by distraction. getting involved in discussion with friends , GN's etc is a great way to take your mind off the pain. I also took up motor racing some eight years ago, again as a distraction from the pain and this proved to be not only a great help in mamaging the pain, but also very rewarding and certainly raised the adrenalin level. Obviously during the past twleve years the pain has played havoc at times with my mental health, and it is very important to get the best treatment possible to counter this. In 2009 I was fitted with a Nuero Modular Implant inserted just under the skin above my left hip. This unit is connected to two wires inserted in my spine and fed down to connect with implant. Each wire has four programmable electrodes that can be activated via a laptop and a hand held remote control to send signals out to the affected area in the form of a pulsating tingling sensation. The idea being to trick the brain into receiving this message instead of pain. It has been somewhat successfull in controlling around 80% of the pain on a good day, however I still experience days of breakthrough pain that has to be controlled via medication. I am posting this as I have found the use of the implant is not commonly known in the community, and if you have private health insurance it can be fully claimable. If not expect a biil of around $80K. I am happy to discuss this issue in a general forum to assit others in seeking some relief. I offer no medical or certified gaurantees of success and I have no affliation with any provider of pain management devices.
Landfall said
09:41 PM Apr 7, 2013
Hi Braveheart,
I too have been and still am a sufferer of CP for the past twenty years.
Do you know about the CP site www.chronicpainsite.com it is very good and is a great help to those who suffer frim CP.
I find that sailing is a great benefit to me, providing I don't get carried away with hauling on sails and anchoring. (the wife does those things) plus we have converted winches to electric where possible.
Thanks for the website info Ken,the main thing is to keep breathing. All the best to you as well.
Grams said
05:23 AM Apr 9, 2013
Can I ask what is classed as Chronic Pain?
I have Osteo arthritis in my spine, plus I have Scoliosis, so for the last 10+ years the pain in my spine has been getting worse...I can walk for about 10-15 minutes and then I have to sit down as the pain is unbearable until the muscles in my back relax so the pain can go away. I ended up going to my GP again to see what he can do to help me. I have had a CT scan to see how bad it is now, I will be seeing him again in a couple of weeks for the results.
For all this time I have just put up with it, as I never considered there was anything they could do. The high doses of Osteo Panadol don't touch the pain.
I have heard of people say they suffer from CP, but I never knew what it meant. The GP has never said it to me, so I assumed this wasn't me...but I have always wondered.
vk6tnc said
05:37 AM Apr 9, 2013
Grams wrote:
I have heard of people say they suffer from CP, but I never knew what it meant. The GP has never said it to me, so I assumed this wasn't me...but I have always wondered.
Most major hospitals have a "Pain Clinic". Ask your GP for a referral.....
Grams said
05:44 AM Apr 9, 2013
vk6tnc wrote:
Grams wrote:
I have heard of people say they suffer from CP, but I never knew what it meant. The GP has never said it to me, so I assumed this wasn't me...but I have always wondered.
Most major hospitals have a "Pain Clinic". Ask your GP for a referral.....
Unfortunately I don't live anywhere near a major hospital, I live in a small country town, to see a specialist you have to either wait until a specialist visits once a month or you have to travel hours to get to the city.
vk6tnc said
05:48 AM Apr 9, 2013
I, too, have the small country town problem.....BUGGA
Bravehearts said
05:36 PM Apr 9, 2013
Hi Grams, Chronic pain is used as the term for severe pain affecting any part of the body for 24/7. It is nomally classified as some form of nerve damage and there is normally no cure. However some people have chronic pain as a result of an injury that has not repaired itself. Chronic pain also messes with brain function and in general most sufferers also have emotional issues (i.e. Depression) this is a generalisation only from my own experience and is not meant to cast any reflection on others who may have differing symptons. Cheers, David.
Cricket said
06:23 AM Oct 30, 2013
I too am a sufferer of severe chronic pain.
I had two major fusion surgeries on my spine prior to having a spinal cord stimulator implanted. The unit was implanted in July this year. it consists of a rechargeable control unit that is inserted in my abdomen that is fed by a paddle with 20 small electrodes that was inserted via a laminectomy at T8/9 in my spine in the hopes that it would control pain in my lumbar spine, legs and feet. it was also hoped that it would remove the need for me to be on strong pain medication.
The unit works in much the same way as the one Braveheart described. It provides some relief for the pain in my legs and feet but unfortunately doesn't help with the extreme pain in my lumbar spine or the crippling SIJ pain. Since having it implanted I have already been back in hospital for revision surgery on the unit because one of the extension leads was faulty. My journey doesn't look like its over yet because now it looks like there might be an issue with the control unit. The down side of one of these units is that all parts are implanted so the only way to get to them for repair is through more surgery :(
Most reputable doctors will tell you that having a spinal cord stimulator implanted is a surgery is a last resort. It should only be considered when all other avenues have been tried. It does not fix the problem - it just helps to mask the pain.
I have spoken with people from around the globe about their experiences with this and have had mixed responses. There are those for whom this surgery is a lifesaver because it has allowed them to increase their activity level and therefore their enjoyment of life. There are others for whom this approach does not work at all and there are people like me who find that it helps a little but not enough.
Like many others, mobility, or lack or it, is a big issue. I was hoping it would mask the pain enough that I could increase my fitness and therefore increase my mobility. Sadly for me, this hasn't been my outcome. It hasn't taken away my need for heavy medication but it has helped reduce the amount of times I need to take additional medication for breakthrough pain. It does this by providing a distraction to my brain. What it also does, unfortunately, is interfere with the link between my brain and my legs/feet. As a result - my mobility has reduced even further. I now spend most do my time either on crutches or in a chair, depending on the distance I need to travel. I can still manage short distances with either a walking stick or just my leg brace but this tends to be restricted to around the house and around the flat parts of my yard. I guess it's a trade-off really - some pain control with reduced mobility or some mobility with reduced pain control ...
That being said - I refuse to let my disability take away my retirement plans. My husband and I took a sabbatical a few years back and did the great lap. We loved it so much that we are planning to continue our adventure into our retirement. I know that there will be issues around figuring out what I can and can't do, dealing with high pain days etc but we have the rest of our lives to figure it out
Gerty Dancer said
03:28 PM Oct 30, 2013
Thank you to all of you who have told us about their Chronic Pain experiences. I know you didn't do it to gain sympathy, but you have my sympathy anyway. And you have motivated me to stop whingeing about all the little aches and inconveniences of life. Bless you, and may a cure be found!
Hi to our fellow GN's, as a long term (12 years) casualty of dealing with chronic pain, I feel somewhat qualified to offer help and support to others with similar issues. I have endured some 11 surgical procedures (including removal of my right kidney, which the pathology showed a perfectly good kidney was removed for nothing) and have visited 14 specialists plus tried all the various alternative treatments such as acupuncture, massage, meditation etc, I still live in pain. I have found a most effective method is management by distraction. getting involved in discussion with friends , GN's etc is a great way to take your mind off the pain. I also took up motor racing some eight years ago, again as a distraction from the pain and this proved to be not only a great help in mamaging the pain, but also very rewarding and certainly raised the adrenalin level. Obviously during the past twleve years the pain has played havoc at times with my mental health, and it is very important to get the best treatment possible to counter this. In 2009 I was fitted with a Nuero Modular Implant inserted just under the skin above my left hip. This unit is connected to two wires inserted in my spine and fed down to connect with implant. Each wire has four programmable electrodes that can be activated via a laptop and a hand held remote control to send signals out to the affected area in the form of a pulsating tingling sensation. The idea being to trick the brain into receiving this message instead of pain. It has been somewhat successfull in controlling around 80% of the pain on a good day, however I still experience days of breakthrough pain that has to be controlled via medication. I am posting this as I have found the use of the implant is not commonly known in the community, and if you have private health insurance it can be fully claimable. If not expect a biil of around $80K. I am happy to discuss this issue in a general forum to assit others in seeking some relief. I offer no medical or certified gaurantees of success and I have no affliation with any provider of pain management devices.
Hi Braveheart,
I too have been and still am a sufferer of CP for the past twenty years.
Do you know about the CP site www.chronicpainsite.com it is very good and is a great help to those who suffer frim CP.
I find that sailing is a great benefit to me, providing I don't get carried away with hauling on sails and anchoring.
(the wife does those things) plus we have converted winches to electric where possible.
All the best,
Ken
www.chronicpainsite.com
Thanks for the website info Ken,the main thing is to keep breathing. All the best to you as well.
I have Osteo arthritis in my spine, plus I have Scoliosis, so for the last 10+ years the pain in my spine has been getting worse...I can walk for about 10-15 minutes and then I have to sit down as the pain is unbearable until the muscles in my back relax so the pain can go away. I ended up going to my GP again to see what he can do to help me. I have had a CT scan to see how bad it is now, I will be seeing him again in a couple of weeks for the results.
For all this time I have just put up with it, as I never considered there was anything they could do. The high doses of Osteo Panadol don't touch the pain.
I have heard of people say they suffer from CP, but I never knew what it meant. The GP has never said it to me, so I assumed this wasn't me...but I have always wondered.
Most major hospitals have a "Pain Clinic". Ask your GP for a referral.....
Unfortunately I don't live anywhere near a major hospital, I live in a small country town, to see a specialist you have to either wait until a specialist visits once a month or you have to travel hours to get to the city.
Hi Grams, Chronic pain is used as the term for severe pain affecting any part of the body for 24/7. It is nomally classified as some form of nerve damage and there is normally no cure. However some people have chronic pain as a result of an injury that has not repaired itself. Chronic pain also messes with brain function and in general most sufferers also have emotional issues (i.e. Depression) this is a generalisation only from my own experience and is not meant to cast any reflection on others who may have differing symptons. Cheers, David.
I had two major fusion surgeries on my spine prior to having a spinal cord stimulator implanted. The unit was implanted in July this year. it consists of a rechargeable control unit that is inserted in my abdomen that is fed by a paddle with 20 small electrodes that was inserted via a laminectomy at T8/9 in my spine in the hopes that it would control pain in my lumbar spine, legs and feet. it was also hoped that it would remove the need for me to be on strong pain medication.
The unit works in much the same way as the one Braveheart described. It provides some relief for the pain in my legs and feet but unfortunately doesn't help with the extreme pain in my lumbar spine or the crippling SIJ pain. Since having it implanted I have already been back in hospital for revision surgery on the unit because one of the extension leads was faulty. My journey doesn't look like its over yet because now it looks like there might be an issue with the control unit. The down side of one of these units is that all parts are implanted so the only way to get to them for repair is through more surgery :(
Most reputable doctors will tell you that having a spinal cord stimulator implanted is a surgery is a last resort. It should only be considered when all other avenues have been tried. It does not fix the problem - it just helps to mask the pain.
I have spoken with people from around the globe about their experiences with this and have had mixed responses. There are those for whom this surgery is a lifesaver because it has allowed them to increase their activity level and therefore their enjoyment of life. There are others for whom this approach does not work at all and there are people like me who find that it helps a little but not enough.
Like many others, mobility, or lack or it, is a big issue. I was hoping it would mask the pain enough that I could increase my fitness and therefore increase my mobility. Sadly for me, this hasn't been my outcome. It hasn't taken away my need for heavy medication but it has helped reduce the amount of times I need to take additional medication for breakthrough pain. It does this by providing a distraction to my brain. What it also does, unfortunately, is interfere with the link between my brain and my legs/feet. As a result - my mobility has reduced even further. I now spend most do my time either on crutches or in a chair, depending on the distance I need to travel. I can still manage short distances with either a walking stick or just my leg brace but this tends to be restricted to around the house and around the flat parts of my yard. I guess it's a trade-off really - some pain control with reduced mobility or some mobility with reduced pain control ...
That being said - I refuse to let my disability take away my retirement plans. My husband and I took a sabbatical a few years back and did the great lap. We loved it so much that we are planning to continue our adventure into our retirement. I know that there will be issues around figuring out what I can and can't do, dealing with high pain days etc but we have the rest of our lives to figure it out