BATTLING TARLOV CYST DISEASE:
Are you or someone you know experiencing chronic, unexplained low back pain, sciatic, or shooting nerve pain? Misdiagnosed or incidental MRI findings?

Here is my story:

In October of 2018, I felt a small twinge of pain in my lower back. (It didn’t feel like a pulled muscle, just a very tiny ache) After weeks and lots of TLC, it wasn’t getting any better.

I made an appointment with my Primary Care Physician (PCP). 6 weeks of Physical Therapy later still no relief! I begged for an MRI but my insurance plan refused to pay for it. After a few attempts my Doctor finally convinced the insurance to cover the procedure.

In the mean time I was getting more symptoms. Pain that wrapped both hips, shooting nerve pain down the back of both thighs with leg weakness. Burning Glutes. (Can be mistaken for piriformis syndrome) Walking, standing and sitting for any length of time makes my back ache worse.

Finally: New Years Eve 2018.  My Results are in: (Tarlov cyst within the S1 central canal and extending into the right S1 nerve foramen measuring 2.5 cm x 1.7 cm x 2.6 cm.) (Sometimes they are listed as incidental finding)

RESEARCH BEGAN:
These cysts (RARE) (also known as meningeal or perineural cysts) They grow out of the spinal cord and the nerve root sheath, they fill with CFS fluid. They compress nerve roots, causing lower back pain, sciatica (shock-like or burning pain in the lower back, buttocks, and down one leg to below the knee)loss of feeling or control of movement in the leg and/or foot. Pressure on the nerves next to the cysts can also cause pain and deterioration of surrounding bone. They can cause bowel/bladder issues. They cannot be removed as they are covered with nerve fibers. They are drained/wrapped to prevent them from refilling.
I am FULLY SYMPTOMATIC

(more of my story)
I see my PCP. Who insists these cysts cause no pain. But, wanted to treat my back with steroid Epidural Injections. (No Way!! - Very dangerous injections)

My journey of finding relief & treatment begins.

I’ve seen several Neurosurgeons/Orthopedics, including but not limited to: Mayo Clinic, Cleveland clinic, St. Joes, University of Michigan, Allegiance Health. Ive even consulted a former Employer Dr. A Mahmoud. A phone consult with T.C specialist in CA. And, finally traveled to Texas to meet with Dr. Feigenbaum who has extensive, world-renowned experience. There are only 4 Doctors in the United States that treat this condition. He restored Hope. Some of these other Dr's agreed, Yes! These cysts (might) be causing some pain. BUT!!
There is no treatment other than pain management. (steroid injections, Muscle relaxers & Narcotic pain killers.)(Ive refused them all) I wanted to treat/heal/battle naturally.
I researched more. Found a wonderful Pain management Doctor in Chelsea. An amazing chiropractor here in Jackson. Maintaining an anti-inflammatory Diet. Using all natural Pain suppressants. I’ve been keeping my pain levels bearable, although I am declining.

I have decided that I am going forward with the wrapping of these Cysts with Dr. F in Texas. (The pain is definitely outweighing the risks.) Moving forward with this surgery will put a huge financial burden on myself and my family. I have had to exhaust most of my sick leave trying to find a doctor who could/would treat me. Work is becoming more unbearable.

My family and I will be flying to Texas and spending 10 days for the surgical procedure and recovery in the first part of September 2019.

I will be responsible for all flights, hotel (once I am released from the hospital, I'll be staying until my post-surgical release.), transportation, food, and my 20% copay. My daughter is taking leave from work without pay to help me while in TX. I will need to be completely off from work for a minimum of 12 weeks. Slowly being introduced back into my very physically demanding job as a mail carrier.

Full recovery can take 1-3 years.

I am ASKING all of you to PLEASE OPEN up your HEARTS❤ and if you are able to help PLEASE do. If NOT, at least SHARE this so we can GET THIS INFORMATION out by BRINGING AWARENESS so that more people with UNEXPLAINED back pain may have a chance for a REAL RECOVERY.

***I am listing several links.

Please take the time and EDUCATE yourself. Someone you know might be needlessly suffering with this VERY RARE DISEASE. 1% of us are very SYMPTOMATIC.

Lots of love, smiles & hugs
(Im open for answering questions)


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**BE Mindful of how your treating people! not everyone struggles with the same demons.��

This letter was written in hopes of improved understanding of those who live with symptomatic Tarlov cysts and the chronic pain, nerve damage, and life altering changes they cause.

"Having cysts on my spinal nerve roots and the resulting nerve damage causes chronic pain and means many things in my life change, and a lot of them are invisible. Most people do not understand about relentless, intractable pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me and my medical diagnosis, Tarlov cysts.

Please understand that living with this medical condition doesn’t mean that I am not still trying to live a “normal” life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don’t seem like much fun to be with, but I’m still me… just sometimes stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I focus on what I CAN do, not what I can’t!

I worry about how the changes in me are affecting you. I care very much about my family and my friends.

Please understand the difference between “happy” and “healthy.” When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I’ve been living with this diagnosis and its symptoms for a while now; I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in pain, or not extremely fatigued, or that I’m “getting better.” Please don’t say, “Oh, you’re sounding good!” or “But, you look so good,” as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery.

Please understand that being able to sit, stand, walk, or be sociable for 15 minutes doesn’t necessarily mean that I can sit, stand, walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand, walk for thirty minutes at a time yesterday doesn’t mean that I can do the same today. With this medical condition, it gets more confusing every day. It can be like a yo-yo. I never know from day to day how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style.
If I seem irritable or distant occasionally, it is probably because I am experiencing an increase in my symptoms. It’s not how I try to be.
As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me."
Reta Honey Heirs - EDITED

https://www.aimisspine.com/condition/tarlov-meningeal-cysts/

https://youtu.be/Hzpznfmx3tw

https://rarediseases.org/rare-diseases/tarlov-cysts/

https://www.tarlovcystfoundation.org/

https://www.frankfeigenbaum.com/

https://youtu.be/0ePUoFx0sz4

https://youtu.be/WByv1KHUj8I

http://fibrowomen.com/fda-warns-about-dangers-of-epidural-steroid-injections-for-back-pain/

https://www.findhealthclinics.com/DK/Kolding/1115755201791023/Scandinavia-Tarlov-cyst-center

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4553737/

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