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Chronic Pain members - Welcome, please introduce yourself
Welcome to the new Chronic Pain group.
I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Why not take a minute and introduce yourself.
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Hi Allan, my name is Carol and I believe we are living in the same world with nerve pain. Mine started in 1987 after my hysterectomy. After every abdominal surgery, pain just got worse and became unbearable. For 3 years I hardly left the house except for Dr appt. I did start getting shots in lower right abdomen and pelvis, which helped me to be able to walk.
Have they mentioned injections or burning nerve? What i was told 10 years ago was if they hit right nerve with injections, I would be out of pain. Even though they are shooting into illonguial nerve, and others, I am still in horrid pain. A lot of issues is there's so much scar tissue around my hysterectomy scar (cut hip to hip) and below that nerves are in trapped. I haven't worked in 13 years, pain changed my entire lifestyle.
Just wanted you to know that I definitely understand your pain and give you info on injections, etc.
Please let me know if you have any new information on what to try, clinical studies, etc.
Thanks and take care of yourself
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3 ReactionsHi 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.
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3 Reactions@faithgirl30 Why the switch to sunk one?
@bustrbrwn22 i think you asked why I was making the switch from dilaudid to suboxone? My pain specialist made this recommendation for two reasons. First, suboxone has a naloxone component to it, making it less likely for the patient to overdose. But second, and most importantly, suboxone has been used for decades to help with patients addicted to heroin and other opiates. When patients were being transitioned from opiates to suboxone in treatment centers, they kept hearing how much suboxone was helping with long term chronic pain. This was an unexpected outcome. As such, pain specialists around the country have been very successfully transitioning their long term chronic pain patients to suboxone over the last few years with great success.
Suboxone is less addicting, less likely cause overdose in patients, is easier to manage, and doesn’t require the close supervision that other opiates require — and it provides good pain coverage for long term chronic pain patients. It also only requires you to take it once a day for 24 hour pain coverage.
The downside of suboxone? The transition from opiates to suboxone requires you go cold turkey off your opiates for 24-48 hours to induce full blown withdrawal symptoms - tremors, nausea, sweating, tearing, irritability, etc. before you can start suboxone. Once in withdrawal it is then safe to initiate the ramp up onto suboxone. We have been waiting until I was well enough to make this jump.
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2 Reactions@faithgirl30 Thanks for sharing this fascinating information! I hadn’t heard this. Please keep us posted on your progress!
@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
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1 Reaction@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.
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3 Reactions@faithgirl30 I have read all you have gone through, and I am so sorry. Terrible. I too, had a spinal cord stimulator, called a DRG, implanted 4 months ago, and it does not help at all. I too, had a successful trial. Anyway, I am just so sorry. I don't want to be redundant, and repeat what Hank has said, but I do want to give you a welcome here. You are in a good place. LoriRenee1
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2 Reactions@faithgirl30 I am sorry for being so shallow but did Boston Scientific give you a “refund” so to speak? How devastating!
@faithgirl30 Amen, sister