NARRATIVE OF MY PAIN JOURNEY As of: 08/25/2023
Prior to my back surgery October 30 2018 for L5/S1nerve impingement , I started to have cold sensation on bottom of both feet. This only happened occasionally and was not real severe. I mentioned it to Dr Kremer (my neurosurgeon) who did my back surgery. (L5-S1 MIS-TLIF surgery) . The back surgery was successful. My back pain relieved 100%. - But the nerve issue (or whatever it is) in both feet and now both legs has gotten progressively worse since November 2018. Now, 60% of my days are very painful. Here is how it happens:
I wake up in the morning feeling fine. No cold feet no leg pain. I never have this pain when I wake up. About every other day, sometime in the morning to early afternoon, my feet start to feel cold. They are not actually cold and feel warm to touch. As the pain begins, It continuously feels like I am standing on a block of ice with bare feet the rest of the day. Anywhere from ½ hour to 5 hours later, I feel burning pain start up my legs (both legs at the same time in the same location). The pain radiates slowly up the back of both calves and eventually include the front of both legs. It slowly, over a period of maybe 2 hours, continues up both legs at the exactly bilaterally . At first toward the back of both legs. Recently it also wraps around the top of my foot and up my shins. The back of my legs feel like I am sitting with both legs in an inch of scalding water. All this pain takes me “out of the picture” physically and socially for the rest of the day.
No OTC pain meds have any benefit. No position, exercise or stretching will relieve the pain. By the afternoon, the pain is almost paralyzing both physically and socially. I go to bed at night, often after taking Oxycodone and eventually fall asleep if I add a Melatonin or Restoril. I wake up in the morning feeling relatively fine, go off to exercise and walk for 30 – 45 minutes, do a few stretches. Occasionally a day will be pain free – the next, as I described above. On my good (pain free) days, my feet feel unusually but pleasantly warm and my lower legs feel like I am wearing tight stockings to the knees. – But no pain.
Added to my misery it has become painful to sit due to pain now also in my buttocks. (again bilateral) This is continuous,- 24/7. It is a different type of pain and is sensitive to pressure. I cannot sit for more than a few minutes and I cannot lay on my back as the pain gets unbearable. From what I have been able to research, I believed this may be piriformis syndrome so my family Dr prescribed therapy(basically stretches) at Tamarac. That had no appreciable effect on the pain. I have had 3 double injections of steroids in bilateral piriformis. That dulls the piriformis pain for a few weeks.
• EMGs done at Barrow, Mayo, Spectrum and at Dr Groff’s (Grand Rapids Neurolgist) office
- NO FINDINGS – indicating neuropathy issues? .
• Visit pain clinic - 4/12/2019 –subscribed massive doses of Gabapentin.(2700/day) – NO RELIEF. Since then, I have visited a neurologist at Spectrum GR (Dr. Mundwiler) who ordered MRI of C and T spine. I have a narrowing of C 5 – C7 spinal cord resulting from a 1964 football injury but they did not know if it contributed to my issue.????? He also prescribed Gabapentin to be an indicator if this is a peripheral nerve issue . . I increased dosage until I was taking 2700mg per day with NO PAIN IMPROVEMENT but bad side effects.
• I have tried Lyrica , Nucynta , Nortriptyline , Welbutrin and even Solumedral Infusions – NO RELIEF.
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• I have engaged neurosurgeon Dr Lowry (who took Dr Kremers place after Dr Kremer performed my MIS TLIF surgery) to explore as a second opinion. Eventually he suggested Javery Pain Institute for injections and further study because Gabapentin had little to no benefit and bad side effects. I want to find the location source so several injections were administered in my from lumbar to cervical spine, as a process of elimination- NO RELIEF
• Pre Covid, I was in Arizona so made appointments at Barrow Neurological Institute. EMG, SSEP and complete blood work were done there. No conclusive findings although, due to the Covid Pandemic, I had to come home before all testing was complete.
• Spent 3 days at Mayo Clinic (Rochester, Mn) 2021. Tested for neuropathy and several other possibilities. No conclusions. EMGs , Sweat Test, SSEP showed basically no nerve damage.
• Made an appointment with Dr Grof, Neurologist in Grand Rapids Mi. He scheduled another MRI and X-rays May 2020. Eventually : SEE ATTACHED referral letter to Mayfield Clinic in Ohio. Insurance OKed 6 visits but Mayfield clinic would not accept an appointment with me unless I started with full spectrum of therapy. I declined since it was 6 hour drive from home.
• Recently – CBD, Cold packs, heating pad, Massive doses of B12, massage, TENS unit for feet and legs. –Lately applying Capsaicin and Tumeric paste to back of legs(home remedy) trying desperately to find relief. So far no success.
• Late October,2021 – several sessions of Physical Therapy at Spectrum Health (Tamarac PT) because Dr DeWeerd (my GP)wanted to eliminate Piriformis Syndrome as possible cause of my leg and foot pain. No results from several therapy sessions.

Lately a Spinal Cord Stimulator was surgically placed. That along with Oxycodone 10-325 takes the edge off somewhat. Pain level of 5-6 still remains. I don’t want to stay on Oxycodone long term so now looking for help.

HELP!!!!! I am at my wits end and have lost 5 nearly years of my life to this pain!!