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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@pat79

Hi, I'm Pat, a 79 year old female. Back pain got bad in 2017. While trying to find the cause of that pain I lifted something to heavy and cause a herniated disk. That led to surgery to fix that, si joint fusion, and then disk fusion of L2-L4. The fusion was because of scoliosis that I was told was progressing too fast. Nothing has stopped the original pain I started out with. I am on hydrocodone and gababentin and muscle relaxers. I am now trying a Stimwave spinal cord stimulator. Not feeling great about it yet. Has anyone else had experience with any of these stimulators? @pat79

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I just begged Ortho surg just the past week as pain was so bad now I wanted to try spinal cord stimulator……he said it works for some & not others & once again wait longer…..I don’t think they realize that we have no quality of life & surgery didn’t help.
Another friend of mine said it didn’t help her.

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@cbeasley

I just begged Ortho surg just the past week as pain was so bad now I wanted to try spinal cord stimulator……he said it works for some & not others & once again wait longer…..I don’t think they realize that we have no quality of life & surgery didn’t help.
Another friend of mine said it didn’t help her.

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It's been about 2 months for me with this scs. The neurologist I went to brought it up right away. He felt more surgery would just increase my pain. So I am trying it. So far I'm just not sure. I have good days and bad days. Some days I have been able to keep going and do things I couldn't normally do. Other days it seems like the scs is causing more pain and I wind I turning it off. So I haven't come to a conclusion yet on my opinion of them. I understand how you feel. You kind of want to try anything that might stop the pain.

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@pat79

Hi, I'm Pat, a 79 year old female. Back pain got bad in 2017. While trying to find the cause of that pain I lifted something to heavy and cause a herniated disk. That led to surgery to fix that, si joint fusion, and then disk fusion of L2-L4. The fusion was because of scoliosis that I was told was progressing too fast. Nothing has stopped the original pain I started out with. I am on hydrocodone and gababentin and muscle relaxers. I am now trying a Stimwave spinal cord stimulator. Not feeling great about it yet. Has anyone else had experience with any of these stimulators? @pat79

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This is the go to now a days, 10 day trial run with floating wire, your so sore, from placement that you do get better from placement pain, you do get better for about 6 months and then certain percent of people say no longer works, then you have permanent wire by then that can’t be removed, research research, also studies I’ve read show it does not help SI pain, this used to be offered after surgery, now is being offered before surgery, I spoke to multiple doctors, some for some against, I would want a longer trial period myself, but that may not be option due to fibrins forming on wire and unable to remove or secure

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@kimmycorvette1

Can u have CRPS without the red skin?

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Yes, I don’t have swollen or discolored skin and my skin is not sensitive to touch I have horrible, unrelenting pain.

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Joanie I'm new here! Hello

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@babygrlz43

This is the go to now a days, 10 day trial run with floating wire, your so sore, from placement that you do get better from placement pain, you do get better for about 6 months and then certain percent of people say no longer works, then you have permanent wire by then that can’t be removed, research research, also studies I’ve read show it does not help SI pain, this used to be offered after surgery, now is being offered before surgery, I spoke to multiple doctors, some for some against, I would want a longer trial period myself, but that may not be option due to fibrins forming on wire and unable to remove or secure

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I had an SCS removed 3 weeks, no problems. It never worked.

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I've had chronic pain for many years and no one would help me, recently got a pain pump its not Avery big dose but I can go for walks.

Iroc

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Hi. My name is Barb. I have been had chronic pelvic pain for 20 years. For the first eight years any of the doctors I saw, and I think the medical profession in general, did not even acknowledge it existed. Then it took another five years to get referred to a CPP clinic and get in. Over the past seven years I have had several treatments with varying degrees of success. I am told that the longer you have pain the harder it is to successfully treat.

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Lets all hope for some pain relief for all so we can enjoy life no matter how much time we have left. After hearing how great the Mayo Clinic is I explained how severe pain I am in at 62 in the Lumbar Back. I need complex surgery to fuse 3 levels. I made the appointment to be interviewed over the phone, for treatment by Dr Mohammad Bydon at Mayo Rochester and because I do not have "the right Medicare" we cannot help you. What the Hell? At my age, working hard all my life and to be turned down over Medicare and barely able to walk- who do you serve Mayo? Only people around the world if they have enough money? I can pay Mayo my 45% of my bill since Mayo is out of network but was never given that option. Shame on you Mayo Clinic Rochester, If anyone knows how I can receive help from Dr Mohammad Bydon, Please, Please let me know. ******** Posted June 14th 2023 at 4:12: AM because of pain all night. Bless your heart. I truly wish you all a
pain free life. How can I access care at Mayo? I do not trust the skills of the local Neurosurgeon here in Seattle WA, The surgery if done by an expert will enable me to walk again and spend time with my 9 year old Grandson before I am Dead. Severe pain minute by minute is so depressing!

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@minneapolis123

Lets all hope for some pain relief for all so we can enjoy life no matter how much time we have left. After hearing how great the Mayo Clinic is I explained how severe pain I am in at 62 in the Lumbar Back. I need complex surgery to fuse 3 levels. I made the appointment to be interviewed over the phone, for treatment by Dr Mohammad Bydon at Mayo Rochester and because I do not have "the right Medicare" we cannot help you. What the Hell? At my age, working hard all my life and to be turned down over Medicare and barely able to walk- who do you serve Mayo? Only people around the world if they have enough money? I can pay Mayo my 45% of my bill since Mayo is out of network but was never given that option. Shame on you Mayo Clinic Rochester, If anyone knows how I can receive help from Dr Mohammad Bydon, Please, Please let me know. ******** Posted June 14th 2023 at 4:12: AM because of pain all night. Bless your heart. I truly wish you all a
pain free life. How can I access care at Mayo? I do not trust the skills of the local Neurosurgeon here in Seattle WA, The surgery if done by an expert will enable me to walk again and spend time with my 9 year old Grandson before I am Dead. Severe pain minute by minute is so depressing!

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Hello @minneapolis123, You will notice that we removed your telephone number to protect your privacy since Connect is a public forum available to anyone on the Internet.

I understand your disappointment. The reality is that Mayo Clinic receives more requests for appointments than available openings. Thus other factors for requesting an appointment come into play. Appointments are prioritized on the basis of medical need. Availability
depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). It is possible that reviewing your case, the physicians assessed that the care and treatments you are receiving is what they would recommend and didn't want you to incur additional costs for evaluation or travel. Additionally, while one Mayo Clinic location may be at capacity another may not. If location is not a factor for you, you could inquire about another Mayo location than the one you first contacted, i.e., at the Florida or Arizona campuses.

I encourage you to call the Office of Patient Experience. Here is the toll free phone number:
Phone: 844-544-0036 (toll free).

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