Help Megan K. get her surgery

In March of 2019 my wife Megan was diagnosed with a rare disease known as Tarlov Cyst Disease (TCD). A Tarlov cyst, also known as a perineural cyst, occurs when there is a dilation of the outer sheath of a nerve inside the spinal column. The dilated nerve sheath fills with cerebral spinal fluid which expands and puts pressure on the nerve and any adjacent nerves and if left untreated could cause permanent damage to the surrounding bones and discs. These cysts cannot be removed as they are part of Megan's nerves. They can only be drained and then wrapped to prevent reoccurrence. Megan has 2 of these cysts in her S1 and S2 vertebrae, the right being the bigger of the 2. 

 

Nerves are incredibly sensitive and in symptomatic individuals like Megan, these cysts put pressure on them that results in a variety of pain and numbness. These cysts cause unending pressure on the nerve cluster that controls Megan's lower extremities. She has been in constant pain for several years and the intensity is unpredictable. We only know that the cysts are getting bigger.  I have had to watch as the woman I love slowly loses her independence, mobility, and happiness. She is completely incapable of doing things she loves like gardening, spending time with our puppy Shasta, and leading an active life. She can’t sit or stand for more than a couple minutes and she can’t wear normal fitting clothing or shoes of any kind. Medication helps to dull the pain, but the only way Megan will get relief is through a specialized spinal surgery. 

 

No one knows for sure why these cysts occur nor do we know what caused Megan’s cysts become symptomatic, but we do know that trauma to the spine can make them worse. Megan has played 20+ years of soccer and used to ski, snowboard, hike and run 5ks. She's been rear-ended on the freeway and she's had falls at home. In a one year period, we moved 3 times and each time she lifted a box her cysts got aggravated a bit more. Had we known then what we know now I would’ve never let her lift anything during those moves.

 

Although the diagnosis was made last year, Megan has been dealing with pain and fatigue for many years prior. Megan's pain started to worsen when we were on our honeymoon. An excessive amount of time in the car mixed with the stress of the wedding caused her tremendous pain and we ended up coming home after only 2 days. After we got home from the honeymoon things continued to get worse. We saw doctor after doctor trying to figure out what was causing the problem. Megan has tried everything to find relief: physical therapy, aqua therapy, acupuncture, 4 sympathetic nerve blocks and countless visits to the ER when the pain became unbearable. While going over the results of an MRI, Megan noticed an abnormality in her sacral spine and started asking questions. That was the first time we ever heard the words “Tarlov cyst” mentioned. After years of suffering we finally had an answer. An Orthopedic surgeon looked over her MRI and confirmed her diagnosis. Unfortunately, that surgeon wasn’t trained to perform the surgery that Megan needs. 

 

TCD is so rare that only a few doctors in the world treat it, only 2 of which are located in the United States. We were finally able to meet with one of those neurosurgeons in January of this year and he agreed Megan is a good candidate for surgery. We were initially denied surgery by our insurance company, but after nearly 2 months and a 161 page appeal they agreed to partially cover in-network doctors. We are currently waiting as patiently as possible for our turn as surgeries are slowly being rescheduled due to COVID-19. We're hoping for surgery sometime in July or August. This is an extremely delicate surgery wherein the doctor will be removing a piece of Megan’s spine to access the cysts. It will require multiple doctors: the neurosurgeon, an anesthesiologist, an internal medicine doctor, a pain management doctor, an x-ray technician, a radiologist and an outside neurologist to monitor Megan’s nerves from a remote location during the surgery. Some of these doctors may be out of network and we will have to pay them out of pocket. 

 

Aside from the medical expenses we will also have to fly to Dallas where we will have to stay for 10 or more days. Megan will be recuperating for a year or two.  For the first month she will need me to stay home to care for her 24/7. It will be very difficult for her to handle even the most basic self care as her pain levels may actually increase at times as nerves can take a while to heal.


Megan and I have waited a long time for this surgery. We look forward to being able to go out on dates again and maybe one day we can even redo our failed honeymoon. I just want to see my love be comfortable again. We humbly ask that you help us on this journey towards recovery in whatever way you can. Besides money we also need multi-layered cloth masks for our trip, hypoallergenic sanitizing (99.99% effective) hand wipes and sanitizing (99.99% effective) surface wipes that have no dyes, bleach, or fragrance (i.e. seventh generation, honest company etc.) as Megan has severe allergies. We have had trouble finding these items due to COVID-19 and our inability to leave the house. If either of us are sick, Megan will be unable to have surgery at this time. So if anyone wants to donate any of those items we will happily accept them and will provide an address.  We understand that times are tough for everyone and we truly appreciate any help you can give us. Every little bit helps. Since we don't have dates set yet we are estimating travel expenses.

Thank you for your time,

Adam K.