Living with pain

My pain runs the entire length of my leg, down into the foot to the big toe. The pain is most severe where the leg and foot meet. The 5% lidocaine gel provides relief in that area, and I do wear an ankle brace for additional support. The doctor who botched the SCS test is now reduced to being an oxycodone dispensary until I no longer need him. Because of the botched test, I don't suspect he'll be too resistant to his reduced role!

Thank you- it's a work in progress.

Hi Mikayla, welcome to Connect. Thank you for coming to seek advice, and learn from others. First, I'm sorry to hear of your daily persistent headaches. Two years is a long time! You have quite the resume of trying many strategies.

Speaking from experience of having migraines for years, and occipital neuralgia, I've also had the not so nice pleasure of spinals, epidurals, neck and occipital nerve blocks, radio frequency ablations in both neck and head, plus monthly Botox and migraine self injection meds. I tried 5 months of lidocaine infusions, and even drank a migraine abortive powder mix. All to no avail.

Like you, I wanted relief, and to move on with my life. Unfortunately it did not happen that way. Drs. do the best they can, while staying in their specialty lane, and offer us one treatment, test, medication after the other. In some cases, all that flares our system, stress builds because we are not finding relief, and the cycle go on.

It took me a long while to come to grips with a different, more holistic approach where my struggles were more in my hands, verses Drs. hands. I realized "band aids" were not helping my chronic situation, and once in chronic mode, it becomes more than one miracle pill or injection...it becomes more about a comprehensive plan of teaching one how to calm, and quiet the raging fire of symptoms and pain.

I like you, wanted help, and the only help I eventually found was the Mayo Clinic Pain Rehabilitation Program. It's a pretty big step, and only you know if it's worth it to you, but it taught me how to quiet my fire by cutting of the fuel lines through PT, OT, drug reduction, cognitive behavioral therapy, etc....

Here's a link to the Pain Rehab Center in case you are interested:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Do you mind letting me know your thoughts? Is this anything you might consider?

Rachael, Thank you! I just know how I would get to the Mayo Clinic. I am in Pennsylvania.

I understand, I live in NY, and flew to Florida for the 3 week program. It took preparation and strategic planning. I'm on Medicare and had to switch my plan in order to have out of network coverage, plus I had to figure out meal, hotel, and travel expense. It's a big undertaking. Not everyone is able to swing it, but I will tell you that if at all possible, it is an amazing, life changing program. I always felt that even people who weren't in chronic pain would benefit from the experience.

You can apply right through the PRC link I attached earlier, with no real strings attached, but it will get you started and get you in the Mayo system. Or your Dr. can refer you. Mayo does offer financial assistance, if qualified.

A fellow Connect member @skier, will be attending Mayo PRC this month. He may be willing to share his experience with you.

Wow, you certainly put your all into it. I am seeing an alternative medicine lady tomorrow to see what she has to offer. My neurologist wants me to do more Ketamine and infusions but after 6 years, I'm sick of it all. Not only is the headache painful but every procedure hurts. I just had open heart surgery and the doctor was sure that after the hole in my heart was repaired, I'd get relief. Not! My brother had heart surgery at the same time and his migraines went away.

Hi Rachael @rwinney;
6 days and counting until I start the PRC program in Rochester next week (August 10). I've started packing and looking forward to staying in a nice apartment near Kutzky Park within walking distance of Mayo Clinic. I finish Sept 1 and will be happy to share my experience, with the exception of a few program secrets that other graduates have kept to themselves. CANT Wait!

later,

Roger @skier

I'm very glad your open heart surgery was a success. That's great news! Yes, I agree, after 6 years, and not being any farther ahead of the game, I'd be sick of it too.

Do you mind asking your alternative medicine lady tomorrow, if she is familiar with Central Sensitization Syndrome (CSS)? Most specialists do not understand, or take the time to understand CSS. It is a chronic pain syndrome caused from an upregulation of the central nervous system. It can stem from a traumatic event, surgery, procedures, or possibly unknown (born with it). I learned that so much of my needle entries, which began hurting more and more, were continuing to push my upregulation and add to my pain. As you explain more to me, I definitely wonder.

Here is a video by Mayo Clinic's Dr. Sletten, presenting on CSS. It really provides the "why" behind the "what".
https://www.youtube.com/watch?v=8defN4iIbho
Best of luck with your appointment tomorrow. I am rooting for you!

YAYYYYYY Roger! I'm so excited for you. I just know you are going to rock the program and greatly benefit from it. Please take your time in responding back. It's important to put yourself first and let things fall into place. Best of luck, my friend.
Rachel

Good advice, thanks,

Roger