Occipital Neuralgia Surgery Update

Update on Derek's surgery:

Due to miscommunications of office staff at UTSW, Derek was not able to undergo surgery in December.  That is the politest way I can simply put it. The good news is that he has been fully accepted by Dr. Peled as a patient and will begin the full GOND (Greater Occipital Nerve Decompression) procedure on February 23, 2018 in San Francisco. It is a week long process.
Dr. Peled and his staff have by far been the most diligently helpful of all, and have gone out of their way to provide informative support and accommodation assistance. Derek's consultation w/Dr. Peled alone via Skype was like night and day in comparison to past doctor-patient experiences. Truly incredible. I have read and watched every single review and patient testimonial. He has given so many their lives back in various forms with this procedure. There is an assortment of miracle stories from patients that suffered the same symptoms as Derek lives with, in addition to having been subjects of the same non-successful treatments. Interesting! 

Cherished donations to the original fundraiser post have gratefully accumulated near $1200, although we still have a way to go to achieve our goal towards getting this guy treated properly. He deserves the help and any amount at all is appreciated beyond words.  If you would be so kind as to include your mailing address in a private email, we'd like to send you back a little something in reciprocation to your kindness and generosity. 

Mind blowing: 

Original Fundraiser Post:
Thank you for being here. You’re about to help save a precious life.

What I can easily say about Derek McKenzie is that he’s one of the most determined and kind-hearted people I know and is never one to ask for help. He jumps at any opportunity to help others before helping himself. His talents and skill sets are endless. He can fabricate anything metal, build you the most beautiful motorcycle you’ve ever seen (from scratch) maybe even a car or a house if you want. He can fix anything. Simply put, the guy is brilliant. This may be a clue as to why many come to him for help.

During his motocross career, D suffered whiplash and a fracture of the talus bone as a result of coming up short on a jump. This is equivalent to jumping off a two-story building and experiencing the impact from landing so hard.

The orthopedic surgeon could not see the fracture and ruled it a sprained ankle. Feeling something was off due to unbearable pain, 2 weeks later Derek returned to the OS for an MRI and it was then discovered and properly treated.

To briefly sum up the (approaching) 5 year nightmare that followed and that Derek is currently going through due to a misdiagnosis is nearly impossible. He lives just about every single day in debilitating pain: The worst form of migraine combined with nausea and stabbing neck pains as well as burning sensations in his eyes. Some days the ringing in his head is so loud… just out of nowhere. It’s a rollercoaster ride in hell. There have been times that he will randomly feel relief for a day, and if he’s lucky, sometimes for a couple of days. Then there are the weeks/months he lives in seclusion dealing with the pain, in hope of waking up feeling normal the next day. 95% of people with this condition commit suicide.

He has seen 28 doctors, neurologists, specialists, pain management doctors and surgeons. He has been diagnosed with Post-Concussion Syndrome, Traumatic Brain Injury, Cervical Spondylosis, Post Traumatic Syrinx, C1 and C2 Non-Healed Fx, 2 vertebrae C1 Area 2mm off, Intractable Post Traumatic Headache, Occipital Neuralgia and Occipital Condyle Fx.

Being a rare case, some doctors I’m sure have done their best, and some not so much. It must feel pretty scary when specialists tell you they can’t help you anymore.
If you’re thinking, “…has he tried doing…”  the answer is yes.

He has tried C2 radio frequency nerve blocks, different forms of Botox injections, steroids, electrical stimulation on the cheek and eye, injections in the spine and neck, brain work-outs, balance and eye exercises, acupuncture, massages, diet adjustments and eating clean, non-traditional medicine techniques, CBD oils and Topicals, not to mention the Spinal Taps, X-Rays, CT’s and MRI’s galore. He has been to the National Institute for Brain Treatment, and undergone a week worth of procedures. There are some photos here for reference. You may be able to imagine how incredibly painful and financially costly this has been.

At this point, his primary diagnosis is Occipital Neuralgia. Considering the years of research and failed treatments, Derek’s only hope for a shot at a normal life again is to undergo Greater Occipital Nerve Decompression Surgery. This is an invasive procedure, where they cut into the base of the skull to remove the damaged nerve. The second surgery follows 2 weeks after the first, this time entering through the temple to remove the other damaged nerve. These two areas are the locations from where the pain and pressure initiate and primarily live. As standard protocol surgeons exhaust less invasive treatments before considering patients for the GON surgery. He is officially the perfect candidate. There is only one surgeon in the DFW area, out of network that perform the procedure. Last week Blue Cross Blue Shield denied coverage and appeal. It was deemed experimental. It has been a constant battle with BCBS and doctor’s offices. Shocking, I know. UT’s charity will not assist in any way and the reason provided is "it’s not cancer nor life threatening.” Well it is life threatening and as with any medical procedure, no one can guarantee perfect results.  There are many publications and studies that prove highly successful results for patients like Derek.

He has been instructed to get off pain medication (which does not provide a great amount of relief, but some…) in order to accomplish a higher surgical success rate. He is so highly motivated, that he has tapered himself off the pain meds in double time. This process is and has been extremely difficult considering the withdrawal symptoms on top of the symptoms of what already exists. Another photo I have included here is a list of the pain medications prescribed to Derek. None of them have been successful. He was unknowingly allergic to a couple of them and that experience was drastically terrifying and beyond traumatic.

Derek makes the world a better place for many people and we would all like to see him have the life that he deserves. UTSW needs full payment upfront to move forward with performing surgery. Each surgical procedure costs $10,000. Then there are follow-ups and recovery costs and medications.  Considering the on-going painful 5 year doctor and treatment limbo, out of pocket family funds have depleted well over 100K and sadly at a time when we’ve finally found a promising solution. Any assistance and donation towards this would mean the world to us. If you’re still here reading this, thank you. You have a piece of my heart.
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    • $20 
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    • $25 
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    • $200 
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    • $1,000 (Offline)
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Organizer and beneficiary

Dinah Capshaw 
Dallas, TX
Derek McKenzie