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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 7 hours ago | Replies (7052)

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@leahklein

16+ physicians (most of them at Mayo Clinic - Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking, and up until recently still thought, that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case - not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show...'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Thomas Shives. Dr. Stephen Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. William Cross who removed a broken distal screw previously holding my nail in place - failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain - fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar - that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy - stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 - July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck - no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers - to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

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Replies to "16+ physicians (most of them at Mayo Clinic - Rochester), 20+ conditions/ailments/diseases ruled out and countless..."

Maybe it's not related to your previous issues. Perhaps you have a knee that needs to be replaced. You mention running, you run long enough, you will need new knees. I've had to accept that that is where I'm at. If I spend too much time on the cross trainers, I wake up with a note on my pillow from my knee's, "We''ll come back when you stop."

I also use a number of alternative therapies which may not cure me but they increase my sense of well being enough that my pain becomes more manageable. I use Qigong, meditation, Healing touch, exercise, rubs, (ketoprofen), and I used to do yoga. I also have a pain pump that I got at the U of MN. It is the "bomb". Keep looking, if the Docs ain't gettin it, look to the alternatives. Qigong is also the , "bomb". Good luck.

Is your pain pump for back pain or other all over pain?

Does the pain pump work?

Thank you for your encouragement. I did receive a call back from Mayo regarding a neurostimulator. I'm cautiously optimistic.

Like a charm. Better than monkeys in clown suits dancing on your kitchen table.

The best part is, when you have pain, you pick up your little remote control, called a bolus. You turn it on and you hold it over the spot where your pump is on your tummy, you hold the button down and it gives you an extra bump of Dilaudid. The pump gives me 2.75 mg a day evenly over the course of 24 hours. I have another one mg of Dilaudid which is broken into 10 doses that I can give myself once an hour 10 times in 24 hours. it gives you a great sense of control. My doc has also left me with very small doses of Narcotics to take orally. theoretically they are not enough to do me any good but they function is a very helpful placebo, so he says. I think every little bit helps and I still take Tylenol from time to time for headaches or arthritis pain, I take Lyrica for neuropathy and I also take amitriptylin for these very extreme pains that I get shooting through my toes. all in all I'm in very good shape. The last two drugs I mentioned Lyrica and amitriptyline I need because I'm a Survivor of a very rare cancer which left me with its own kind of pain from the chemo treatments. Hopefully you never go there. And don't forget to meditate. and don't forget to take Qi Gong.