Klippel Feil Syndrome (Congenital Synostosis of Cervical Vertebra)

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bghost
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January 14, 2019 at 9:21 am

Post count: 1

#30064

Klippel Feil Syndrome (Congenital Synostosis of Cervical Vertebra)

Dr. Corenman

I have Klippel Feil syndrome/sequence and congenital scoliosis due to bony malformation. I have consulted with an orthopedics doctor in December 2018. According to the doctor surgery would not benefit me and recommends nonoperative treatments and medication of pain management.

I have 100% neck pain which is localized to the paraspinal muscles on either side of my cervical spine. I have congenital fusion with convex left side scoliosis. There is evidence of arthrosis in the remaining facet joints there is no evidence of instability on flexion-extensions views. I have scoliosis and a hemivertebra. I also have some congenital rib fusion.

I have been treated by pain management specialist in December 2018. The doctor recommend I have Botox injections in my neck. After the injections were administered, I experienced swelling in one of the injections sites which the doctor examined and did not find any concerns. Since the time of the injections, l feel more pain in my neck which has caused me not being able function in my home and at work. I can not sit for long periods of time at which point my left neck line start to hurt really badly.

I did have some pain before the injections which were caused by my syndrome and was being treated with hydrocodone 10/325 mg which was managing my pain. With the opioid epidemic my primary physician started prescribing me less medication. The pain management specialist informed me when we started the injections that he was pain management specialists and would not prescribe me any pain medication. When I started to ask for medication to help with my pain, he told me that he was not a pain management specialist. He did provide me with two-week supply of hydrocodone 5/325 mg twice a day which did not break through my pain.

I have come to the end of my rope. I am not sure who can assist with my syndrome and help manage my pain. I feel like I am being ignored and experimented on with the different types of modalities. I have seen different doctors who all want to inject me with some type of medication. The Botox injection was not a wise choice for me as the results caused me more pain then before. My current employment requires me to travel at least 10 hours a week and then sit at a desk entering data on a computer for several hours a day which causes me more pain. The pain medication was able to combat my pain and help me feel comfortable and function. I find myself in pain all the time with no breaks and angry because I cannot find anyone who can help.

I am not able to lift my neck to shave which has been difficult and I am having some problems swallowing my food since the Botox injections. I was having numbest in my right fingers (pinky, ring finger, and middle finger) and on my left fingers (thumb and pointer finger) before the injections. I used to use a pillow to sleep but have stopped since the Botox injections because it causes me more pain. I cannot do my daily chores like I used due the combination of my condition, type work required at my employment, and the Botox injection.

I am reaching out to you for help. I feel that my family and friends do not understand the pain I experience on daily basis. I also feel that doctors who I have consulted with are not able to help with my syndrome and/or pain because the lack of knowledge of my syndrome. I have tried every muscle relaxant there is with no relief. I have tried all home remedies that family and friends have suggested with no relief. I am losing my hope and starting to feel depressed because there appears to be no relief from my pain.

Thank you,
Berlyn G.

Donald Corenman, MD, DC
Moderator

January 19, 2019 at 11:31 am

Post count: 8660

#30069

Your neck pain apparently does not include significant shoulder or arm pain which indicates a mechanical disorder in your neck without nerve root compression. You do note numbness in your hands which could indicate some nerve involvement but without radiating pain from the neck to the hand, more likely this is entrapment neuropathy in the hand or elbow.

See: https://neckandback.com/conditions/carpal-tunnel-syndrome/,
https://neckandback.com/conditions/cubital-tunnel-syndrome/ and
https://neckandback.com/conditions/radiculopathy-pinched-nerve-in-neck/

Since you have facet disease, more likely than not facet pain should be causing your localized pain. I know you have gone thru injections galore but the diagnosis and treatment of facet pain is generally through injections. Botox is generally used for headaches and not facet pain syndromes.

See: https://neckandback.com/treatments/facet-blocks-and-rhizotomies-neck/

Dr. Corenman

PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.

Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
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Donald Corenman, MD, DC

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81 reviews

Eric S

Sep 26, 2021

by Eric S on Donald Corenman, MD, DC

Successful pars repair at 46 years old

Back in November of 2018 (at 46 years old) I came from Vancouver BC to have a pars repair done with Dr. Donald Corenman at the Steadman Clinic in Vail Colorado. I'm finally posting this review nearly three years later in late 2021. The reason I waited so long was I wanted to know the final result before I posted my review. Unfortunately in that time Dr. Corenman has retired. Nevertheless, I want to post this review of Dr. Corenman and his staff at the Steadman Clinic in their excellent treatment of my L5 pars interarticularis.

I fractured my pars at age 42 back in 2014 when rolling on the gym floor, and was denied treatment by the Canadian healthcare system, probably due to my age. First my GP told me there was no surgical option for a pars defect, which was quite incorrect! I tried to live with it, but the symptoms worsened (periodic random spine slippage and weeks of resultant pain after just bending over to tie my shoe, so I eventually learned to mostly squat and hardly bend). When I finally consulted with Canadian spine surgeons, I was told they believed my pars defect had been congenital (since birth). This was absurd, considering I had done extreme martial arts (including jiu jitsu) for years prior, as well as 5 years of reinforcing steel full time in my 20s, probably the hardest job on the back you can find. No pars defect like mine would possibly have allowed this--ergo it was impossible that I had had the defect since birth. I did however have an asymptomatic congenital spina bifida occulta that made me more susceptible to a pars fracture. In 2014 in one instant, I went from having the strongest back people I knew said they'd ever seen, to being unable to safely bend over and tie my shoe without a non-negligible risk of my spine slipping randomly (which would lead to weeks of pain after each occurrence). This was due to the unilateral L5 pars defect, otherwise known as spondylolysis. It was when lying in pain on the floor 4 years later after maybe the 6th spine slippage event post injury, that I had had enough, and resolved to have surgery. If Canada's "universal health care" said no, I would make lemonade from lemons, and find the very best surgeon in the world at pars repairs. That was Dr. Donald Corenman. Dr. Corenman back in 2018 ran a website https://neckandback.com/ that dedicated many pages to the science of every aspect of pars repairs, from eligibility (good discs on MRI), to best surgical techniques (minimal open compared to minimally invasive), best imaging to use (i.e., O-Arm with Stealth imaging vs. older fluoroscopy), the ideal amount of BMP to use and why not use too much or too little, and much more, all to do with pars repairs, pages upon pages of his site just on the pars, with scientific references and his own extensive expert opinion. As a health research statistician, I was very impressed with this. It was in stark contrast to the websites of other spine surgeons which barely gave the pars a word or two, focusing almost exclusively on fusions. I had found the best surgeon in the world for pars repairs, and so after Dr. Corenman personally screened my MRI to ensure my discs were healthy, I booked the surgery.

Being 46 years old at the time of surgery in 2018, with a 4-year-old pars fracture from 2014 combined with a congenital SBO meant my pars fragment was somewhat atrophied, but it was "very solid", said Dr. Corenman in the operative report. Nevertheless, it was challenging with two things to fix, the pars and SBO, and OR time was around 4 hours. Recovery over the following months was guided by a very clear "Spine binder" from the Steadman Clinic with strict rules of "no BLT" (no bending, lifting or twisting), and illustrated physiotherapy guidelines. They even warned patients to avoid fish oil supplements, which could excessively dampen inflammation and hence slow bone healing. They answered many questions I had during months of recovery, with responses coming from the very supportive Lori Fugate (then director of Dr. Corenman's practice), and Ehrich Bean (then physician's assistant at the practice), as well as a couple calls with Dr. Corenman himself after two of the CT scans. Ehrich Bean offered great advice for taking the spine binder conservatively due to the nature of pars repairs vs. fusions. The final post-op CT scan I had was a couple weeks ago at 34 months post-op, and Dr. Corenman had retired, but I got a very positive and informative call from Eric Strauch (current PA at the Steadman Clinic under Dr. Corenman's replacement there, and who had also worked with Dr. Corenman previously). The staff at the Steadman Clinic were extremely supportive all the way through the process. I should mention, the local Canadian spine surgeon did offer me very good post-operative support including antibiotics as needed to deal with a mild surface incision-site infection early on, booking numerous x-rays when I felt something was amiss, as well as booking all four of my post-op CT scans. I am very grateful for that support also.

My final result shows plenty of solid bone across the pars and a healed SBO, with my vertebral body now a solid bone ring instead of being broken at two places as it was pre-op. Does my spine hold up in the real world? You bet! I have recently dug and moved several yards of dirt and sand and gravel by myself (shovel and wheelbarrow!) to fix our water main, pulled roots from the yard, moved several "portable" (these are HUGE) air conditioners up several flights of stairs my myself, and lifted weights. I now run 2 miles (3.2 KM) several times weekly with a hard 100 meter dash in the middle. I bend deeply before each run I go on, with no spine slippage. My spine feels amazing. I can bend over to do exercise, or real word tasks, with no risk of spine slippage.

My sincere thanks to God, Dr. Donald Corenman, Lori Fugate, Ehrich Bean, Eric Strauch, and the Steadman Clinic, as well as the Canadian spine surgeon who offered me excellent post-operative care back in Canada. You have all given me a new lease on life.

Sincerely,
Eric S

Robert S

May 11, 2021

by Robert S on Donald Corenman, MD, DC

Back Fusion Surgery

I had my entire lumbar spine fused in November of 2018. I had scoliosis , with pinched nerves that were so painful I could hardly walk - and standing for more than a few minutes was impossible. Even sitting was painful.
The fusion surgery produced immediate relief! And the recovery was much easier than I expected.
To this day I can do all the activities I love from hiking, to standing in a stream fly fishing to riding my bike long distances - or just walking down the street with my wife.
Kudos to Dr. Corenman and his staff, (including the two Erics) for taking such good care of me!

Leslie R

Jul 9, 2020

by Leslie R on Donald Corenman, MD, DC

TLIF

I had my TLIF surgery on 6/24/2020 by Dr. Corenman, I can not say enough good things about the Dr or his staff. I was always treated with respect and explained everything throughly, that made it easy for everyone to understand. I highly recommend Dr. Corenman and the Steadman Clinic.

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