They won\'t say the word Arachnoiditis

Tagged: Arachnoid Diverticulum

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Drice
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February 20, 2017 at 1:29 pm

Post count: 2

#24355

I have been suffering from lower back pain since 2007. It all started when I had pain in right hand and pains down my arm and began getting a raised bump around the C6-C7 area. It turned out to be a cyst. It was 4cm and it was right down to the fascia. That was taken out in 2014. Then it came back the next year, and this time it was 6cm. That was taken out in 2015. Also, after years and years of “no clue” visits to the doctor, I insisted that it was in my rectum. Finally, it was discovered I had a large arachnoid diverticulum, that had been missed for several years, because they never went down far enough on the MRIs. Apparently I have had this for decades. All the while, I lost my urinary abilities, I have pain in the groin, hip pain. The neurosurgeon, who is 80 years old went in originally to do a laminectomy and saw that this arachnoid diverticulum was pressing severely on my nerves I have had no pain care at all, just sent away with “Failed back surgery syndrome.} I insisted that, for the third time, I felt the C6-C7 on coming back. So I had a full series of MRIs on Feb 14, 2017. The findings say “there is a new enhancing mass and it’s already 1.6 x 3.5. It says this lesion does not have the typical appearance of a lipoma. The differential diagnosis would include a recurrent lesion that is higher grade or possibly an infection. I looked at it and it looks like a jellyfish with tenticals (this is the third time this one has came back and now it’s more advanced. ) Also I had a large arachnoid diverticulum, that had been missed for several years, because they never went down far enough on the MRIs. Apparently I have had this for decades. All the while, I lost my urinary abilities, I have pain in the groin, hip pain. The neurosurgeon, who is 80 years old went in originally to do a laminectomy, and saw that this arachnoid diverticulum was pressing severely on my nerves, and his statement says it has caused severe disabilities, but won’t actually say them.

Now, the MRI I had two days ago, the first one post surgery of 2015, says “There is enhancing tissue within the sacral canal and posterior parasacral soft tissues in keeping with postoperative granulation tissue/fibrosis.

I hurt so bad. I have been fighting for my SSDI, as I used to be a courtroom stenographer. After all of this misdiagnosis they made me out to be a drug seeker, when I haven’t had anything like that since 2012.

I can see that I have arachnoiditis in my MRI when I compare it online, but they won’t say it!!! Also, they are giving me shots in my spine currently, which are not helping, and have put me on Suboxone. I am in such pain, and I cannot get a proper diagnosis or any comfort in life. I think the reason I cannot get a diagnosis of arachnoiditis is that they are all affiliated with one another.

I have no idea what to do. I have been on the couch and a heating pad for four years now,. I have cysts everywhere in my body, including ganglion cysts on my hands. I have gained 40 pounds and live with the depression of it all. No one seems to be familiar enough with all of these different cysts and the affects of them; therefore my care has been lacking, to say the least.

I forgot to mention, I also have one at the C3 level, which hasn’t even been addressed yet.

The large one, the arachnoid diverticulum eroded my sacrum. The neurosurgeon just went ahead and operated on it while he was in doing a laminectomy, and I had no idea when I woke up why I was sliced all the way to my buttocks, and asked for an explanation. His first surgery ever for that type of thing.

Right now I would just like to get a proper diagnosis and proper care. I cannot find a radiologist within my budget to read all three MRIs as a second opinion, cervical, lumbar and sacral. I really don’t understand why it’s so hard for them to give you something solid to go by.

I guess my question in all of this is: Is there someplace for someone like me, who has been bedridden and is not rich, to get a second opinion on my MRIs so I may move forward in my life? Thank you.

Donald Corenman, MD, DC
Moderator

February 20, 2017 at 5:02 pm

Post count: 8660

#24356

Arachnoiditis is unfortunately not curable. Treatment has to focus on management which includes medications, certain therapies, electrical stimulation and activity modification. I cannot comment on whether you do or do not have this disorder but if you have any questions, you can always ask a spine or neuroradiologist (for a fee) to review your films and give a separate opinion.

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.

Drice
Participant

February 24, 2017 at 5:50 pm

Post count: 2

#24429

For a fee is the problem. By time you get four years on a heating pad and couch, you don’t have that kind of money, $200 per scan, to pay out. I am just in so much pain, and I cannot get anyone to understand it. They want to sell me a spinal cord stimulator. I’m almost 47, and I have reservations about something like that in my body. I cannot seem to get any pain control at all, and I haven’t been able to four almost four years now. The lack of education in this area, cysts…I’ve had 5 so far….is lacking. Every time I try to explain to the doctors, what is textbook Tarlov Cyst Disease, etc., they want no part of hearing it. I’ve been advocating for so long that I am at the stage of giving up. I swallow at least 15 Aleve a day. I know that sounds awful, but I have no other choice. I just wish I could find a doctor, like Dr. in California, that would take an interest in me. :) Thank you for responding.

Donald Corenman, MD, DC
Moderator

February 25, 2017 at 4:17 am

Post count: 8660

#24430

Chronic pain from nerve injury is difficult to treat. Tarlov cysts generally are painless but impressive looking on an MRI. Spinal cord stimulators can be helpful to certain patients. You might be focused on disorders that might not be the cause of your pain. Talk to a chronic pain doc.

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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