@janice0809 how are you feeling, I hope you’ve managed to stay afloat but remember chronic pain can really tough so I hope you’re being kind to yourself especially on those tough days.
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@patrick17 there is absolutely no doubt the devices had a positive outcome for pain management, especially with the damage I was left with following earlier Spinal trauma. In this respect I highly recommend them. It was just very unfortunate that it meant I could not have an MRI which would have picked up the other deficits I was suffering from earlier.
I can only hope that future developments in pain management come up with a similar device that is MRI compatiable because they really can be very beneficial.
In terms of the different types, the two brands were very different. The Medtronic ones I could feel the tingling in the areas the device was programmed to focus. The Nevro was a high frequency one so I couldn’t feel it working. In terms of the two different devices the Medtronic was good in the sense that each time the cycle stopped/started I would feel it kick in. Of course over time I became semi conscious of this happening so there was no thought process about it. If my pain was really bad I could use the remote to increase or change to another program to seek relief and would feel it tingle faster, stronger etc… The Nevro gave better pain relief for me overall even though I couldn’t actually feel it. Again I could increase or change the program to fit with the varied levels of pain. It really helped with nerve pain in legs/back and neuropathy in feet.
I do remember when it was suggested we try the Nevro and I read all the info, I thought ‘I’m not sure how this is going to work because if I can’t feel is working how is it going to change the pain?’ I was was pleasantly surprised how much it did help.
Whatever you decide make sure you research and ask questions of Drs and other patients who have used pain devices – good luck
Hi, over the years I’ve had 3 dorsal column Stimulators (2 made by Medtronic the other by Nevro). I found them to be quite affective however please be very stringent in researching any kind of implanted pain device because many of them are not MRI Compatable. I ended up having emergency surgery to have my all my devices and leads removed so I could receive treatment for severe spinal instability.
I’d been complaining of my back feeling like a concertina that was going to collapse at any time. Of course I didn’t know at the time but that was exactly what was happening. One day I lost bowel/bladder control and it suddenly became a medical emergency. The devices were removed, MRI performed and before I knew it I was having a 6 level spinal fusion.
Even if you are told the device is MEI Compatable ring a few radiology/imaging places and ask then if they do MRI’s with pain devices. Many won’t even though some device company’s approve them. 9 mths prior to my back surgery I had brain surgery across the other side of Australia because no radiology would do a Cranial MRI where I live. Over 4000 to be able to have an MRI.
My pain specialist who put the stimulator in was hesitant to remove it because it was so difficult to put in in the first place. Perhaps if it had been removed earlier I wouldn’t have ended up with such complex circumstances surrounding both brain and spinal surgery. It’s important to remember that if you need one of these devices you probably have chronic pain and your condition may require ongoing imaging to monitor whatever condition it. Please check and double check the information you’re given, I would hate anyone to have to go through what I did
Sep 20, 2018 · Has anyone been diagnosed with Central Sensitization? in Brain & Nervous System
Yes I was diagnosed with this a number of years ago. It’s been a long process to even begin to try to manage it because I’ve needed major brain and spinal surgery within a year of each other.
My nervous system operates on high with highly sensitive damaged nerves contributing to an already battered body. It’s been incredibly important and helpful for me to learn and regularly practise meditation. I take time out several times a day to meditate and try to include mindfulness in as many things as possible.
For me management has been about working with it as opposed to trying to change it which can be extraordinarily difficult. As humans beings when we experience pain we want to stop it. Whilst wanting to rid ones self of pain is normal it’s so ideal for those suffering chronic pain as it’s often an u realistic goal. Coming to terms with that and making peace with the idea that chronic pain will most likely be part of my life indefinately, immediately set a different attitude in my mind and I began to work with it as opposed to it.
I am exactly 6 weeks today post surgery of a 6 level fusion L1-S1. It is the 2nd fusion I had the first one being 23 years ago when they fused L4-S1. The first injury which lead to the fusion left me with severe nerve damage, it's weird though because 23 years of chronic back pain is a long time but it certainly doesn't feel that long. Over 23 years I had 3 dorsal column pain stimulators implanted to help with pain, which provided good relief however come with their own set of complications which would be the reason I had them removed this year, I worked full time for 20 of that 23 of those years in chronic pain, unfortunately 3 years ago I had to give up full time work and not long afterwards had to give up part time, after a fall which knocked me unconscious and identified an acquired Chiari Malformation. For me this meant the bottom part of the brain, the cerebellar tonsils herniated through the foraman Magnum into the spinal canal 17mm interrupting Cerebral Spinal Fluid Flow to and from the brain/spinal canal, significantly compressing my brain stem and medulla. Although asymptomatic initially (apart from severe concussion), 18 mths later symptoms were so bad I couldn't walk unaided, hold my head up supported, smile, laugh or cry from the severe headaches this caused, swallow without chocking, the list goes on and is the reason behind why I had to give up work completely. I traveled to the other side of Australia to have brain surgery to reduce and hopefully stop any further long term damage by the herniation and compression of my brainstem and consequently my spinal cord. The surgery performed was Posteria Fossa Decompression, a laminectomy, cauterization of the cerebral tonsils and patch grafted from my own dural to prevent the brain from slumping further. That was Oct 2017. In terms of the decompression surgery I was recovering reasonably well and many symptoms were reduced however my spine felt like a concertina that was going to collapse. I was unable to have an MRI due to my pain stimulator however after losing bowel and bladder control 8 weeks ago my Neurosurgeon made the call that the devices and leads had to come out so they could get the necessary scans to find the cause of the the spinal problems and bowel/bladder control. They discovered severe spinal instability and degeneration from previous undiagnosed Juvenile Disc Disorder. The old fusion was taken apart,then a laminectomy, discectomy, bone removal and grafts, finishing with rods and titanium screws to stablise the spine from S1-L1. Recovery has been tough and pain severe. I have a number of pain medications that I take daily. Thankfully I discovered meditation a number of years back which helps enormously and a positive attitude is absolutely essential. Don't get me wrong I have my days, I've been through severe depression and thankfully came out the other side of some very dark times. The pain is enough sometimes to drive anyone spare but overall I maintain that a positive attitude has more benefits than any drug could ever offer. I feel there's so much I need to share with people in the hope that it makes their experience dealing with similar conditions and circumstances easier. Its hard to know where to start so sometimes rather than overthinking it you just have to start somewhere in the hope things evolve from there and I find an effective way of helping people, however that may be.
I’ve had a number of trauma injuries over 45 years of life which have resulted in some significant nerve damage. Although I’ve seen many Specialist there has been no specific type of neuropathy diagnosis, although most is peripheral, because there’s always been more pressing issues to contend with which steers Investigations in other directions.
I had a spinal injury 25 years ago and fractured 3 vertebrae after a fall on a working holiday in England. At the time although I knew I’d hurt myself I continued to backpack with a 25 kilo backpack around Europe. Hindsights a great thing but when we’re young we believe we’re infallable. A spinal fusion followed 6mths after I returned home. I suffered nerve damage and I’ve had 3 dorsal Column stimulators implanted over 20 years to help with nerve pain.
I’ve had a number of other injuries which resulted in ongoing nerve problems. I broke both ankles (at different times) which were pinned and put in casts. The plaster had to removed with both due to severe nerve pain affecting the external parts of my ankle. I couldn’t stand to have anything touch my ankle for at least 6 mths, no shoes, no sheet/blanket and at times even having my foot in water whether it be the shower, bath, pool was excruciating. Lots of desensitisation work to help my alter my bodies response to stimulus of any sort.
I had severe type 2 diabetes for which I was on insulin for over 5 years. I’m happy to say this is now controlled through diet and lifestyle change and I no longer have any medications to treat this.
I have moderate degeneration of thoracic and cervical spine with neuralgia affecting my strength and body’s response (over sensitive or sometimes lack of sensation) to stimuli.
I also have a Chiari Malformation which was diagnosed after a head injury. I stood up and became dizzy, fell and was knocked out on the TV cabinet on the way down. It’s believed the impact forced my brain through my skull and into my Spinal canal. A previous cranial CT before the accident did not show a Chiari which is how this reasoning was attained. In addition to Chiari it is suspected I have Syringomyelia (Syrinx or cysts on the spinal canal) which affects my strength and alters many sensations sometimes causing intense pain other times resulting in paralysis. The Syrinx if not treated appropriately may continue to cause irreversible damage. Because of my dorsal column stimulator I have been unable to have MRI scans which has meant some diagnosis can not be ascertained. The decision has been reached to remove the device so MRI’s can be taken which will happen in the next couple of weeks. I will then fly interstate in Australia to have decompression surgery and possible fusion of cervical spine. They will also decide how to treat the Syrinx. I have facial neuropathy which results in severe facial pain that brings me to the ground it is so severe. In combination with pain I have paralysis in my face, again my face responds in different ways to stimuli.
My team of specialists are somewhat baffled by the complexity of my conditions but they are slowly being able to bring it a together and gain a better understanding of what’s going on and why. That’s it in a nutshell, there’s more to it but these are the basics. Hope this gives a bit of insight
Thank you Colleen and John, I’m hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it’s a team approach and I’m a vital player. It’s not easy, in fact it’s damn hard a lot of the time and some days I wonder how I’m going to get through it but I don’t have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I’m in the process of undergoing treatment with neurosurgery planned in the not to distant future. It’s hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There’s no guarantees and it’s still a long road to travel but I’m crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven’t delved into it too much due to the complexity, it’s helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I’ve been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you’re made to feel it’s in your head. But I’m not giving up, I can’t give up and through perseverance I’ve found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved