Brian is my husband. We just recently got married. Almost immediately afterward, we have found out that he has a rare disease, and treatment isn't covered by his insurance.
Brian has Tarlov Cysts Disease (a rare condition where cysts growing into and on the spinal cord). The cysts are filling up with the cerebral fluid that is leaking out of his head and spinal cord. (So when he stands imagine your brain bumping against your skull because it has nowhere to go or float. Hell of a headache). Brian already battles degenerative disc "disease" - and has already undergone spinal surgery, spinal fusion, and neck surgeries. We also found out that Brian needs surgery again on his neck and lower back because previous surgeries didn't take more than likely due to the TCD. No one will touch him though or operate as it's a liability until the TCD gets address. We have no doubt these complications are only adding to his pain and symptoms.
Because there's only 4% of the population that have symptomatic Tarlov cysts, there's only 3 qualified surgeons in the USA. One isn't taking new patients. The other two...Neither of them are in the Chicago area - where we live. He's been in and out of the hospital and out of work. Medical bills are piling up and I'm not quite sure how to make rent & bills at the moment. He didn't qualify for disability because it was seen as a previous condition.
Since his condition is progressively getting worse with symptoms, time is precious and crucial. Permanent nerve damage, seizures, and even paralysis are a brutal reality and undesirable possibilities.
We are blessed and on a 3-4 month wait list for the neurosurgeon in Dallas who specializes in his condition. He wouldn't be able to travel alone. We'd both have to take off over a full week of unpaid work to travel (it's been advise that he doesn't fly for fear of complications, because its a pressure thing, having a cyst rupture, etc.) for him to even receive the surgical treatment, recovery time, and therapy needed. I'm scared as this is looking to be our only option. I've used up all my PT at work. And have already had to take quite a few unpaid days off.
I'm very concerned that as this continues to progress.... The pain and severity of symptoms (excuciating pounding headaches, dizziness, numbing & tingling in the extremities, pain ranging from the head to specifically the lower back, sciatica and testicles, weakness, cramping, inability to walk/sit/urinate/perform regular daily tasks, the list continues...) are already making his quality of life low and unmanageable. Simple things like a decent rest aren't even possible.
I feel beyond helpless. We've tried so much with no alleviation of his pain and symptoms.
I have decided to put off our wedding. I need him well and able to show up to life. We also don't have any finances to even have a legit wedding.
I am at a loss to get Brian the help and treatment he needs! We already have $10k in medical bills not including his most recent hospital stays. His child support for his 3 children is $2,500/month. That's 3/4 my monthly paycheck, and the last thing we want is for the kids to be effected.
This has been hard, it's even harder and ultra sensitive to be sharing and asking for help. He's an amazing man, and if anyone deserves this, it's him. SO, I'm taking action, swallowing pride, and doing it.
Please...and thank you...From our hearts & souls to yours.
You can read more about this rare disease & condition here: Tarlov Cyst Foundation
- Steve Wolf
- Steve Wolf
- Amanda Claire
- Jeffrey Smith
Organizer and beneficiary
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