Maryann Tarlov Cyst Surgery Support

Hi, my name is Maryann. Thank you for taking the time to read about my story & unexpected Tarlov Cyst Disease (TCD) diagnoses.

Short story:

As the logistics unfold of having out of state Neurosurgery on my spinal cord nerves with a TCD specialist, and my condition deteriorates, I have come to accept that I need all the help I can get to make it to surgery day and beyond.

Your donations will fund air travel, hotel stay, rental car for out of state surgery, help in purchasing mobility aids, preop & postop care items as I will not be able to bend, lift, or twist at the waist for a minimum of 4-8 weeks, soften the blow of accruing medical debt, and help me to keep working & helping patients.

Long story:

It's been a roller coaster of a ride trying to find medical care.

I have worked in Medical Imaging for the past decade supporting Radiologists & Medical Physicists in patient care and clinical research.

I provide image analysis for research studies & create 3D image recons to help liver cancer patients get treatment and living organ donors who wish to donate a kidney to a patient waiting for a transplant. During this time I got married, completed my B.S. in Medical Imaging Technology, & grew my family. I also enrolled in grad school for my Masters in Data Science.

After my last pregnancy I noticed I was having some lower back pain & tingling sensations in my legs any time I bent over to pick things up. My 2021 lumbar MRI showed I had a bulging lumbar disc and an incidental finding of a Tarlov Cyst at sacral nerve 2 (S2).

My Ortho doc gave me the diet & exercise talk. He explained how I was getting older, had multiple pregnancies, and I needed to really focus on strengthening my core muscles so my disc does not fully herniate.

I spent the next 3 years in and out of physical therapy.

‍I felt worse.

Despite the exercise, increasing my daily step count, various stretches, dry needling, cupping sessions, taking more and more ibuprofen, and resorting to seeing a pelvic floor physical therapist I knew something was not right. I shouldn't be working this hard to have my symptoms become more frequent and intense, as well as have new symptoms show up.

In 2023 I was rescanned.

I fully expected my Ortho doc to tell me my lumbar disc had fully herniated and I needed a lumbar fusion to get back on track.

My MRI showed my lumbar disc was unchanged, my spinal column was stable, and I had a LOT more Tarlov Cysts.

Globally about 5-9% percent of the population has Tarlov Cysts and many people live their lives never knowing they ever had them.

I am part of the 1% living with TCD that is impacting quality of life.

The cause for Tarlov Cyst Disease is unknown. There is no cure. Medical training teaches MDs that Tarlov Cysts are asymptomatic (non-issue). My Ortho MD referred me out to 3 different local neurosurgery groups who all rejected the referral and stated I should be sent back to pain management.

The problem was, I was starting to wake up with parts of my toes or feet numb for hours or days at a time. Some days I would have pins and needles (like when your arm falls asleep and is starting to wake up) up and down my legs. Burning nerve pain in my left hip. Sciatica down my left leg. Severe low back pain and leg pain. Intense muscle cramps. Vice like pressure on my legs (like when a blood pressure cuff is on too tight for too long). Some days it feels like there is water running down my legs or part of my legs are wet when they are dry.

All the unpleasantry that accompanies losing feeling to the lower half of your body.

I'm at the point where I can't sit for longer than 5-10 minutes without my sciatica flaring up and experiencing hip and low back pain...that's with sitting on a cushion with the tailbone cutout. Standing for longer than 30 minutes on a cushioned floor mat wearing arch support shoes causes me leg & low back pain. It feels like I have a cinder block tied to my tail bone. Staying asleep at night is difficult when the entire lower half of my body aches and burns from the day-to-day activities of working full time and raising a family.

My mobility is becoming more limited and I already utilize various physical aids to accomplish daily life tasks. I experience all this despite the various prescription strength NSAID, nerve pain meds, muscle relaxers, supplements, and applying ice packs throughout the day.

I dropped out of grad school & avoid leaving my house to relieve some of the stress and physical demands on my body.

I need more than pain management.

Tarlov Cysts are not true cysts.

They cannot be "removed" as they are the spinal cord nerve root and lined with nerves.

It is cerebral spinal fluid (CSF) building up and ballooning out the nerve sheath covering (visualize an aneurysm). The internal spinal nerve is slowly being crushed by the buildup of CSF in the nerve sheath.

TCD is also progressive.

My condition will continue to deteriorate unless I have a medical intervention to halt disease progression in the areas where my spinal nerves (offshoots of the spinal cord) are weakened. Many symptomatic TCD patients live in chronic pain, become bed ridden, paraplegic, live with bowel/bladder/sexual dysfunction, leg/foot weakness and numbness...the physical, emotional, & psychological impacts are debilitating.

Per the Tarlov Cyst Disease Foundation there are 3 neurosurgeons in the United States that focus their clinical practice on TCD patients and have performed thousands of surgeries.

2 of the 3 offer free phone consults and all of them are out of state.

I came away with bad news from my phone consult with the Neurosurgeon located in Texas. Not only do I have ~8 Tarlov Cysts in my sacral spinal canal (sacrum, aka tailbone) along S1, S2, S3, but I also have ~5 more Tarlov Cysts along the same nerves further down in my pelvis. My largest Tarlov cyst is 36 mm in diameter. He can only operate on one area at a time as the pelvic Tarlov Cysts are not accessible from the same side as the sacral ones.

The good news: he said I am a candidate for surgery as I have no other neurodegenerative issues. He will cut a "window" into my sacrum (he said some of my cysts have become so large that they have already eroded away parts of my sacrum and are protruding through), he will drain off the excess CSF, suture the nerve sheath covering closed, & wrap the spinal nerve so it can not balloon out again in that area. Also, he hopes that when he operates on the Tarlov Cysts at the sacral level, that will hopefully relieve the cerebral spinal fluid pressure & shrink the cysts further down in my pelvis, but that is a big MAYBE and there is a very real possibility I will need a second surgery if I am still symptomatic & having quality of life issues after the first surgery.

This is a condition I will be managing for the rest of my life. I have a pretty good guess where this road ends if I do not undergo surgery…

My idea of postop success would be having 50% relief of symptoms at the 2 year postop mark and no further deterioration of my mobility...my hope would be to resume some of my old activities like daily walks, gardening, and riding bikes with my kids.

Living life as any 37 year old mom & wife should.

I am eternally grateful for any help at a chance of getting my life back.