Chronic Pain members - Welcome, please introduce yourself

Hi everyone! I just wanted to introduce myself and say Hi!

My name is Melanie and I’ve lived with chronic pain for last 5 years or so. I’ve undergone 5 spinal neck surgeries in the last 4 years, the last of which was October 2019. I am now fully fused between C2-T2. My first surgery involved 2 artificial discs which failed. I’ve had a spinal cord stimulator implanted, which didn’t help, so it was removed in my last surgery. I have a fantastic pain specialist and spinal surgeon who coordinate care together, but they agree that I will probably live with chronic pain the rest of my life. I lost a lot of neck motion in the last 2 surgeries and live with chronic daily headaches as a side effect of the added force being exerted at the base of my skull. We are planning on a transition from high dose dilaudid to suboxone in the next few months. Few people appreciate or understand how draining chronic pain can be and how it limits activities of daily living.

@faithgirl30 Why the switch to sunk one?

Hi everyone! I just wanted to introduce myself and say Hi!

My name is Melanie and I’ve lived with chronic pain for last 5 years or so. I’ve undergone 5 spinal neck surgeries in the last 4 years, the last of which was October 2019. I am now fully fused between C2-T2. My first surgery involved 2 artificial discs which failed. I’ve had a spinal cord stimulator implanted, which didn’t help, so it was removed in my last surgery. I have a fantastic pain specialist and spinal surgeon who coordinate care together, but they agree that I will probably live with chronic pain the rest of my life. I lost a lot of neck motion in the last 2 surgeries and live with chronic daily headaches as a side effect of the added force being exerted at the base of my skull. We are planning on a transition from high dose dilaudid to suboxone in the next few months. Few people appreciate or understand how draining chronic pain can be and how it limits activities of daily living.

@faithgirl30
Hi Melanie, and welcome to Connect. I am sorry about your situation. Yes, I know what you are saying about chronic pain, not many people have any idea. I was one of those before my wife's peripheral neuropathy came in to our lives 6 years ago. It has taken over our lives to some extent, and it does seem to be a permanent fixture in our lives now. You are one of a growing list of people I have heard say that their pain stimulator does not work. May I ask you to elaborate on your experience with one? What kind was it, when did you have it put in and did it work for a while and then quit, etc. We had been interested in considering one for my wife but not it seems like about 3/4's of them end up more or less useless. Best, Hank

@jesfactsmon Hi Hank! Thanks for the welcome and empathy regarding the challenges of living with chronic pain. I’m really sorry to hear about your wife’s situation - I feel a great deal of empathy regarding the pain she must experience on a daily basis. She’s lucky to have you as a loving companion and caregiver. I don’t know if I could get through my day without the help of my husband.

I had a Boston Scientific Wavewriter implanted about 2 years ago. It was a combination device that provided both high and low frequency therapy. The trial provided great relief to the right side of my neck, where I was experiencing pain. Because of my pain patterns, my surgeon and pain specialist agreed that I would benefit from a paddle implanted directly over the spinal cord instead of the usual leads. This would allow better coverage, but it required a larger incision down the back of my neck than the leads, so it was a bigger surgery to implant the device than most people undergo. I was really excited about the possibility of pain relief that didn’t require long term medication.

I asked the Boston Scientific reps if we could turn on the device while I was still in the hospital, as surgery on the back of the neck is extremely painful. I was hoping to begin experiencing pain relief right away.

Unfortunately, once implanted the device never worked for me. I worked with the Boston Scientific rep countless times on adjustments to try and create algorithms that would work for me. We were never successful at providing pain relief.

So, in my last surgery, October 2019, I had my surgeon remove the device as part of a surgery where they fully fused my neck and added rods to the back of my neck for stability. One of the things that surprised my surgeon was just how much scar tissue had formed around the paddle, making it really difficult to remove, but this may have also been one of the reasons the device didn’t work. While trying to remove the device and all the scar tissue, my surgeon punctured the dura causing a spinal fluid leak and making my recovery much more difficult.

I know spinal cords stimulators work for many patients - but for me, it just wasn’t a successful experience.

@jesfactsmon Hi Hank! Thanks for the welcome and empathy regarding the challenges of living with chronic pain. I’m really sorry to hear about your wife’s situation - I feel a great deal of empathy regarding the pain she must experience on a daily basis. She’s lucky to have you as a loving companion and caregiver. I don’t know if I could get through my day without the help of my husband.

I had a Boston Scientific Wavewriter implanted about 2 years ago. It was a combination device that provided both high and low frequency therapy. The trial provided great relief to the right side of my neck, where I was experiencing pain. Because of my pain patterns, my surgeon and pain specialist agreed that I would benefit from a paddle implanted directly over the spinal cord instead of the usual leads. This would allow better coverage, but it required a larger incision down the back of my neck than the leads, so it was a bigger surgery to implant the device than most people undergo. I was really excited about the possibility of pain relief that didn’t require long term medication.

I asked the Boston Scientific reps if we could turn on the device while I was still in the hospital, as surgery on the back of the neck is extremely painful. I was hoping to begin experiencing pain relief right away.

Unfortunately, once implanted the device never worked for me. I worked with the Boston Scientific rep countless times on adjustments to try and create algorithms that would work for me. We were never successful at providing pain relief.

So, in my last surgery, October 2019, I had my surgeon remove the device as part of a surgery where they fully fused my neck and added rods to the back of my neck for stability. One of the things that surprised my surgeon was just how much scar tissue had formed around the paddle, making it really difficult to remove, but this may have also been one of the reasons the device didn’t work. While trying to remove the device and all the scar tissue, my surgeon punctured the dura causing a spinal fluid leak and making my recovery much more difficult.

I know spinal cords stimulators work for many patients - but for me, it just wasn’t a successful experience.

Hi everyone! I just wanted to introduce myself and say Hi!

My name is Melanie and I’ve lived with chronic pain for last 5 years or so. I’ve undergone 5 spinal neck surgeries in the last 4 years, the last of which was October 2019. I am now fully fused between C2-T2. My first surgery involved 2 artificial discs which failed. I’ve had a spinal cord stimulator implanted, which didn’t help, so it was removed in my last surgery. I have a fantastic pain specialist and spinal surgeon who coordinate care together, but they agree that I will probably live with chronic pain the rest of my life. I lost a lot of neck motion in the last 2 surgeries and live with chronic daily headaches as a side effect of the added force being exerted at the base of my skull. We are planning on a transition from high dose dilaudid to suboxone in the next few months. Few people appreciate or understand how draining chronic pain can be and how it limits activities of daily living.

@faithgirl30 I am sorry for being so shallow but did Boston Scientific give you a “refund” so to speak? How devastating!

@bustrbrwn22 No, there was no refund, sigh. You have to sign a lot of paperwork before the device is implanted that limits the liability of the device manufacturers. They tell you straight up that this therapy won’t work for everyone, and you are the one taking the financial risk in having a device implanted.