Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

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.

@jdodd81

@jenniferhunter I wish I was as knowledgeable as you! That’s excellent information. Thank you! He didn’t mention what form of narrowing it is. I do know that l5-s1 are completely collapsed, no space in between at all. I had an mri in August after my 2nd surgery and the report stated nothing about the disc, or what’s left of it being collapsed. But the surgeon that work Comp is making me see is saying it was and just wasn’t reported. So they had the August mri to kinda compare the October one to after I fell. I’m so confused on everything, I’m tired of being in this pain and just want them to help me.

Jump to this post

@jdodd81
Good Morning!
I am so sorry you are going through all of this.
I know how confusing it can become.
I always take notes when I go to these doctors, along with a list of questions with room to right answers.
In addition, I try to take someone with me. A second pair of ears is always helpful.

Now, about Workman's Comp doctor…..
I was hurt at work years ago.
Instead of going to the Workman's Comp doctor my work used, I found my own.
As long as the doctor participates in Workman's Comp, I believe you can us that doctor.
Would you consider changing doctors if you are not happy with the one you are using?
You could do a search for another one.
Just a suggestion.
Have a good day!
Ronnie (GRANDMAr)

REPLY

Hello everyone, Thank you for letting me a part of your group. I look forward to connecting with you.

My battles include fibromyalgia, neuropathy, tinnitus, back/pelvic pain, chest pain, daily headache, fatigue, diabetes, depression and anxiety. But while I live with chronic pain, I have chosen to accept the pain (never giving up on solutions but not doctor chasing anymore) and take control of the pain instead of it controlling me. Easier said than done, I know. But with help from my local doctors and the Mayo Clinic Pain Rehabilitation Center (highly recommend), I have the tools I need to lead a functional life. A life still much different than my life before chronic pain but a life I can still enjoy.

If you live in the Des Moines, Iowa area, I welcome you to come to the support group I started last fall. You can find more information here:https://chronicpainsupportgroupdesmoinesia.weebly.com/.

REPLY
@jdodd81

@hopeful33250 I will be having an mri so he can look at the nerves and get a closer look at everything as well as a cat scan so he can see if there are any small fractures that he can’t see on the X-ray.

Jump to this post

@jdodd81 It sounds as if your doctor is being quite thorough, that is good!

Are these tests already scheduled, @jdodd81?

Liked by lioness

REPLY
@tomb1

Hello everyone, Thank you for letting me a part of your group. I look forward to connecting with you.

My battles include fibromyalgia, neuropathy, tinnitus, back/pelvic pain, chest pain, daily headache, fatigue, diabetes, depression and anxiety. But while I live with chronic pain, I have chosen to accept the pain (never giving up on solutions but not doctor chasing anymore) and take control of the pain instead of it controlling me. Easier said than done, I know. But with help from my local doctors and the Mayo Clinic Pain Rehabilitation Center (highly recommend), I have the tools I need to lead a functional life. A life still much different than my life before chronic pain but a life I can still enjoy.

If you live in the Des Moines, Iowa area, I welcome you to come to the support group I started last fall. You can find more information here:https://chronicpainsupportgroupdesmoinesia.weebly.com/.

Jump to this post

@tomb1 That's great that you are paying it forward and helping other patients with what you've learned about pain management.

REPLY
@jenniferhunter

@jdodd81 I'm a spine surgery patient for a cervical problem and I have thoracic outlet syndrome. I'm curious, what was the reason to do surgery and not address a collapsed disc in the operated area? What direction did the disc herniate and could it have gotten worse since your procedure? The burning pain is a concern, and your surgery was just last month, right? Have you asked your surgeon about this?

The numbness and tingling in your hand could be something like TOS and stress and the inflammation in your body from just having had surgery will increase the symptoms there. I'm guessing that you are not very active right now and walking might be difficult or painful, and that you may not be trying to maintain good posture in all you do. With TOS, a forward head posture, slouching shoulders or bracing against pain can aggravate it, and it's a postural nerve entrapment between the collar bone and rib cage of nerves and the blood supply to your arm. It may have more symptoms at night because of your arm position while sleeping. If you had an injury like a whiplash as a cause of spine problems, you may have TOS and it is more common in spine injury patients.

When you are healed enough for physical therapy, you might want to consider Myofascial release therapy for surgical scar tissue in the fascia. Here is a lot of information about MFR, and a link to find a therapist in this discussion That I created about MFR. This might be something else to ask your surgeon about.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Here is some information about TOS https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Jump to this post

@jenniferhunter I had my massage yesterday and as we where talking Michelle the therapist said she is going in continuing education take MFR so am glad to hear this When she knows the technique I will be going to her

REPLY
@jenniferhunter

@jdodd81 Thanks. The problem with being a work comp patient is that the company's "expert" doctors are hired to discredit the patient to prevent the legal liability to the company. They don't want their insurance rates to go up because of a claim, and some companies are self funded, so they are actually paying the medical bills out of their pocket. They might be picking a doctor based on a lower cost to them instead of surgical expertise and experience, and you should not let them make that choice for you.

Work comp also has a award for "Loss of use" of the body part that is based on a scale and a percentage of your salary and accrued years of work. They may not offer that to you unless you file the case with your state's board that handles work comp, and you definitely need an attorney for that. The company has already consulted their own attorney about this. A spine injury can also cause problems years down the road. I am an example of that due to a whiplash 20 years ago that caused the resulting disc collapse and bone spurs leading to spinal cord compression and resulting surgery. You have to think of what is best to do now that will give you the best outcome for your future. Also not all doctors are equally skilled, and some cause problems with surgery. That's why I think you have to do your homework before you choose a surgeon to operate. You will live with the outcome of that. You need to fully understand all the details of any surgery you are considering and the risks and benefits, and the success/failure rate for this specific doctor and the hospital. That is published information. Make sure the surgeon does only spine surgeries and find out how many of these procedures they have done, and ask what other procedures exist for this problem, such as fusion or artificial disc replacement. There are some orthopedic surgeons who do a bit of everything, not just spine surgery and as a result have less experience in it.

Ask questions about what will happen if nothing is done with the collapsed L5S1 disc. If it is "bone on bone", it can fuse itself with bony overgrowth and will be stuck in whatever alignment it has and that may not be good. All of that affects your mobility and employability in other jobs in the future. I know that companies can be held responsible for making something worse in a pre-existing condition in a work related injury, and you need an attorney's advice on that. You have to advocate for yourself and your best outcome that is possible because of what you choose to do now. I do know that surgeries at L5S1 are the most difficult place in the spine to fuse because it is bearing all the body weight, and a twist of the spine can cause screws in the hardware and implants to pull out. That is a common reason for a re-operation at the same level. That's also why you should have the best surgeon you can find. The precise angles of how they place the screws (called pedicle screws) and how dense your bone quality and how much bone you have makes a big difference in holding the screws. I have watched several surgeons presenting talks about this online and read some medical literature. I don't think you have to have treatment or surgery from the surgeon your company selected. Yes, they have to evaluate you, but you should be able to pick your surgeon for any procedure. I had my neck spine surgery at Mayo and was very impressed and had great results. 5 local surgeons refused to help me, and having experienced what really great medical care is, I won't go anywhere else except to Mayo if I need further spine surgery. Here's my story and my surgeon. If you have other questions, I'll do my best to answer them. I would highly recommend him if you consider and can come to Mayo. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Jump to this post

@j81 I frActured my back doing privateer a workers comp case in Pa. The company Dr was great the orthopedic Dr was great They took care of all my medical bills ,extensive therapy for a year plus laid my salary .I did get an attorney for the settlement so this is important but it was settled with what I wanted U had no problems getting my settlement I understand as I live in California now that it's hard here but my w.c. Went smoothly in Pa I was offered other positions which I tried but couldn't do them so we settled . Different states may have different rules Since I also went through this process I wanted to put my 2cents in.

REPLY

Please disconnect me from Mayo Clinic Connect. Thank you!

REPLY

Good morning all! My name is Kimberly Doctor, I am a nurse at Mayo Clinic Jacksonville. I am obtaining my Doctorate of Nursing Practice in Leadership. My focus is nurses as I love my profession and nurses need more support. I am particularly interested in Safe Patient Handling and Management programs compared to just installing Safe Patient Handling Equipment alone. Recently I suffered a back injury and I am no longer able to work on the floor. I have been in pain for 5 months. I have had to completely change my life! It certainly changed my focus in school and finding Evidence-based solutions to make nurse's safer. So glad to be part of the group!

Kim

REPLY
@nursedoctor

Good morning all! My name is Kimberly Doctor, I am a nurse at Mayo Clinic Jacksonville. I am obtaining my Doctorate of Nursing Practice in Leadership. My focus is nurses as I love my profession and nurses need more support. I am particularly interested in Safe Patient Handling and Management programs compared to just installing Safe Patient Handling Equipment alone. Recently I suffered a back injury and I am no longer able to work on the floor. I have been in pain for 5 months. I have had to completely change my life! It certainly changed my focus in school and finding Evidence-based solutions to make nurse's safer. So glad to be part of the group!

Kim

Jump to this post

@nursedoctor
Welcome Kim!
I am so sorry for your injury. Yes, when you are hurt and in pain, it makes us take a good look at our lives and how we live it.
After living with chronic pain for more than a decade, I had to retire early on disability. I was an elementary school principal and could no longer do my job the way I wanted to and needed to.
I am certain that as a nurse AND a Mayo employee, you will be able to give us insight we might not have thought about.
So, again, welcome!
Ronnie (GRANDMAr)

REPLY
@nursedoctor

Good morning all! My name is Kimberly Doctor, I am a nurse at Mayo Clinic Jacksonville. I am obtaining my Doctorate of Nursing Practice in Leadership. My focus is nurses as I love my profession and nurses need more support. I am particularly interested in Safe Patient Handling and Management programs compared to just installing Safe Patient Handling Equipment alone. Recently I suffered a back injury and I am no longer able to work on the floor. I have been in pain for 5 months. I have had to completely change my life! It certainly changed my focus in school and finding Evidence-based solutions to make nurse's safer. So glad to be part of the group!

Kim

Jump to this post

@nursedoctor Good morning Kim I am a retired LPN but after having a frActured L2had to retire ,working private duty at the time so w.c. Case couldn't work anymore fast forward to today ,fracture was in 05 in a senior building helping where I can did start a chair exercises .Welcome to our group .

REPLY
@nursedoctor

Good morning all! My name is Kimberly Doctor, I am a nurse at Mayo Clinic Jacksonville. I am obtaining my Doctorate of Nursing Practice in Leadership. My focus is nurses as I love my profession and nurses need more support. I am particularly interested in Safe Patient Handling and Management programs compared to just installing Safe Patient Handling Equipment alone. Recently I suffered a back injury and I am no longer able to work on the floor. I have been in pain for 5 months. I have had to completely change my life! It certainly changed my focus in school and finding Evidence-based solutions to make nurse's safer. So glad to be part of the group!

Kim

Jump to this post

@nursedoctor Hi Kim! Welcome! I'm glad you joined the group. After being a Mayo patient, I wish I could work there, but I guess that's why I'm here, to help if I can. I'm a Mayo spine surgery patient, and an artist who was loosing the ability to be able to paint, and I came to Mayo and got that back. I truly believe that patients have real power in healing injuries and illness in what they belief about themselves. I learned to advocate for myself after several surgeons refused to help me because they got it wrong. Prior to changing careers, I worked in research for a neuroanatomist at the University of Chicago, and I have a biology degree. I've also learned a lot as a patient from my physical therapist. My focus as a patient going through major surgery was to use art and music to heal and comfort myself, and to defeat my anxiety. I was also a caregiver to my elderly disabled parents, and had to try to manage without injuring myself further when I was in need of spine surgery myself. I think you will have a positive influence on nursing and patient care, and have some great input here on Connect. Here is a little bit about me. I participate a lot in the Art for Healing Discussion (Just Want to Talk Group).
https://connect.mayoclinic.org/page/about-connect/newsfeed/meet-jenniferhunter-where-health-and-art-meet/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

REPLY

Nice to meet you, sorry under these circumstances. I was diagnosed with Lupus. Been living with it for years, but the Lupus fog really getting to me.

REPLY

Nice to meet you, sorry under these circumstances. I was diagnosed with Lupus. Been living with it for years, but the Lupus fog really getting to me. I also have reynaurds.

REPLY

@kelseydm. Hello, I'm a 70 year old gal with severe bilateral foramenal stenosis L5S1, compression on bilateral exiting nerve root, grade 3 spondy L5S1. Surgery, injections discouraged. Now living on OXYCONTIN, baclofen neither of which take the bare edge off my pain. Severe calf and thigh pain, foot tingling, numbness grossly limit my mobility and I'm feeling like I'm losing this battle. Any and all suggestions would be carefully considered at this point

REPLY

@katie215, So sorry that you are having such severe pain. But I write to encourage you to do exactly what you are doing by seeking answers in such places as this. You will find many sympathetic people who will share their stories and their experiences and perhaps you will find some answers. I will briefly tell you my story which is very similar to yours. Recently I began a new pain medication called belbuca which I will tell you about. I can sympathize with you as I have had stenosis at L5S1, L3L4 and L4L5 on both sides along with severe disc degeneration bilaterally and with some of the other things you mention. I have suffered for more than 10 years and had been taking 6 Norco a day until fairly recently which barely made a dent in my pain. I started having severe burning/nerve pain down both of my thighs and after a new MRI was told I was having some stenosis on the right side now along with a cyst at S3S4 on the right side. About 15 years ago we discovered a fairly significant scoliosis and therefore surgery would be life altering and I elected against it. I began to think there was nothing left to try until recently.

Recently my pain doctor suggested I try belbuca. I was very skeptical but am glad I gave it a try. It is a small square sticky patch that you place inside your cheek and wait for it to dissolve. It is meant to last 12 hours so you are relieved of taking so many pills. It is an opiate agonist and antagonist and so is one level below Norco on the drug schedule. I was able to go from 6 to 4 Norco per day with even the lowest dose belbuca patch and am now trying to reduce my Norco further with increasing doses of the belbuca patch. The belbuca has completely gotten rid of the burning pain in my thighs which was extremely severe. I still have some sciatica type pain that runs down my left leg and is quite painful. But I am hoping as I increase the belbuca, I will see more benefit still.

I would encourage you to ask your doctor about belbuca. I hope you have a good chronic pain specialist. I am 64 and even 10 years ago decided that getting a rod in my back with a 9 hour surgery was not for me and so I committed years ago to go the nonsurgical route. I have tried injections and a trial with spinal stimulation without results.

While I am a mentor for the Women's Health group, other mentors for this group may read your post and direct you to some other posts and resources they are more familiar with than I am within the Chronic Pain group. But I saw your post and just wanted to encourage you with my recent experience and let you know that I have found Mayo Clinic Connect to be a wonderful resource with a lot of caring people.

REPLY
Please login or register to post a reply.