Hi, my name is Sasha Oates and I hate asking for help but sometimes the universe throws us some obstacles that we cannot endure without it.
Short version first: I have a huge tarlov cyst, a cyst made out of the bag of fluid that holds your brain and spine. I almost certainly need neurosurgery, halfway across America, with a specialist of the specialists, in Texas. I am only 25 and despite insurance, do not know how to afford this. However I really don't have much of a choice anymore because I can barely sit up for 15 minutes and other symptoms like issues with bladder, hormones, pain, nausea, etc. I hardly ever leave my apartment except for doctors appointments and like maybe two other times in the last 8 or so months. A major surgery with major recovery time halfway across the US is very expensive and my husband can't even afford time off work to be with me facing neurosurgery, so please help me.
Long version for those interested.
I'm a 25 year married woman who has a severe disability. I have a rare
connective tissue disorder called Ehlers Danlos. This disorder causes my tissues in my body to be weak, stretchy, and fragile. This includes my skin, my tendons, ligaments, blood vessels, internal organs like the intestines or lungs, cartilage, etc. This is because it affects a base material in the body called collagen. Collagen is in about 90% of the body's tissues.
A few years ago I started having really bad headaches. I also started passing out when I had been standing too long or right after I stood up. I was forced to quit my career, go on disability, and I now use a wheelchair when I go out because I hit my head fairly hard before and the doctors were concerned with someone who had fragile tissues passing out and hitting the ground.
These headaches have gotten worse and worse. I can now barely sit up for 15 minutes unless I have some heavy pain medication on board (like after surgery). Another issue is the extreme nausea.
My doctors believe these headaches and nausea are caused by a CSF leak. However my imaging was somewhat ambiguous except for one thing, a large tarlov cyst 3.3 by 1.2 cm at the base of my spine, the sacrum. These cysts usually cause symptoms around 1 cm. Mine is much larger.
This has lead to many symptoms that have made life constant pain and exhaustion. I can't sit not only because a headache and nausea, but intense radiating pain from my tailbone. Often pain is just radiating down my right leg, down to my toes. I've had issues with bladder control at 25 years old. I have prolapse. I have issues that are affecting my quality of life.
For the past year Dr. Ian Carroll at Stanford University Hospital has been trying to "patch" the areas in my spine leaking with something called an epidural fibrin patch. We have been trying various approaches with little success. Unfortunately, I keep seeming to "blow" the patches. It's kinda like trying to patch a hose, but the hose is constantly under pressure while you are trying to patch, so it can be difficult. Especially when you have a very wide, stretched out hose, like on over inflated water balloon, plus a little pocket where that water balloon is already stretched to max. Unfortunately with Tarlov cysts of these size, you can't just remove a cyst. It's made with nerves inside. Instead they have to go inside and separate things and possible put more solid materials inside, stitches, etc. This requires a neurosurgeon. But most neurosurgeons aren't even that skilled in this rare disorder.
But there is a specialist neurosurgeon in Texas, Dr. Feigenbaum, who specializes in these cysts. However I live in California. I will need to travel to Dallas, for the first visit, this month. When he schedules the surgery I will need to be there in dallas for the the day before the surgery, the surgery day, at least 1 week in the hospital if everything is great (but I have Ehlers Danlos which has slower healing so could be longer, plus anesthesia complications), then one week within an hour's drive of the hospital in Dallas. My husband and I don't make much. I make a little over $400 a month on disability and together with everything, we manage to make it by in California on less than $40,000 annually, which I am actually very proud of my husband for doing so well. This is with him having to take time off frequently because of my illness and doctors and surgeries, and with me unable to work. But I have a rare, disabling, complicated disorder and medical bills add up really fast even with insurance. Sometimes, we don't even have a choice, when it's one specialist who specializes, out of state, etc, what if they don't take your insurance? What if the anesthesiologist doesn't? What if the lab doesn't? But I don't really have much choice. The surgery has a 90% chance of curing almost all the neuro symptoms, the radiating pain and the headache and nausea. It might even cure the passing out and dizziness and tachycardia. This surgery is the only hope I have.
My husband would like to be there for me but the truth is he just doesn't have those hours, because I've had so many procedures in the last year. If I can't be alone for the week outside the hospital, he will take that week off.
This means I will be facing neurosurgery in a state I don't know, prepping the night before alone, then waking up from neurosurgery alone and spending my first week of recovery alone. It's the facts of the matter.
However we do use FMLA, the Family Medical Leave Act, and under that, Kevin could take Unpaid time off. But we can't do that with bills. We already owe quite a bit already from medical care this year, and now this. It's overwhelming and we are struggling with the strategics of even managing one week for him to be off and with me in recovery, not to mention the hotel and flights. If he were to be there with me during the before and after the surgery, and walking again, and those important first steps, it would mean everything to me, but I know financially we just can't. Which is why I'm reaching out. We need help. I have medical expenses, and this surgery is coming up and if Kevin takes time off, affording rent, bills, etc. plus the hotel and flights. And possible medical care afterwards. We are a young couple who have already had more than our share of financial issues due to reasons outside our control, namely my health, which is the result of a genetic disorder. I was born with funky genes. But this surgery could give me my life back again. I could be able to stand without passing out , walk around the block. I could be in so much less pain and able to think and sit up, possibly allowing me to work from home , in time after recovery. It's a long recovery but it's my only hope of all of that. Right now I live life, laying in bed, connecting to the world via laptop or more often because of pain, my phone. Except for doctors. Then I lie in the backseat of the car, while my husband drives. He gets out my chair and then I ask to be taken back quickly to lay down. The doc exams and we do the whole shebang in reverse. Or surgery, where we do it, just with a lot less sleep and lot more pain. I socialize with medical people and my husband and if I'm ever lucky enough occasionally one of my friends visits me and we hang out while I lay in bed. I miss people and life. Please. Help me get that. And help me so I don't have to face one of the scariest things of my life alone.
- Helen Gallagher
- J. Warren Kelly
- Jennifer Dewey
- Michael Dudek
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