One of the complications that many of us EDSers/chiarians deal with is high intracranial pressure. The cerebral spinal fluid accumulates in our brain, builds up and puts too much pressure around brain tissue. There are different treatments, depending on the cause. For some, having surgery to correct whatever is blocking the flow will lower the pressures. For some, medications such as diuretics will lower the pressures. And, for some, shunts are inserted to drain the excess fluid and keep the pressures down.
I have high intracranial pressures, also known as intracranial hypertension (IH). I have too much fluid circulating in my brain and its making me more sick. I take 2 different medications, Lasix and Diamox, for this. There are plenty of risks to both of these meds. And, there are side effects that come with Diamox, including neuropathy, that drive me crazy. But, I'd rather have neuropathy in all of my extremeties than deal with high pressures. Why? Let me tell you what it feels like when the pressure is up.
Have you ever had a migraine? One of those miserable headaches where you feel every heart beat and want to puke and just need a dark room? That's sorta what this feels like to me. I get a headache. It starts like a migraine. But, then it grows. My entire head pulses. It feels like something is pressing against my skull, my face, from the inside. Eventually, I have trouble holding my eyes open. I can't stand to eat and I want to puke but know that would make me worse. I have a lot of trouble thinking clearly. My reflexes slowly leave. As it gets worse, this "migraine" moves through my body. Everything else starts to behave a little bit wrong. My heart and vital signs are affected, I breath much deeper, I develop tremors and twitches. It starts to feel like I really am dying. Or, hurts bad enough that I want to. I've tried everything from migraine meds to pain pills to ice and heat and dark and sleep. Nothing fixes this pain except one thing....diuretics. Pills meant to pull the excess fluid from your body. They move some of that fluid from my body and my pressures come down and I can function again.
So, when you hear mention of someone's pressure in their head, this is sometimes what they are talking about. High intracranial pressures, aka intracranial hypertension, aka idiopathic intracranial hypertension, aka pseudotumor cerebri.
Friday, April 11, 2014
Friday, April 4, 2014
Why Maryland?
I live in Kentucky. When I tell people that I travel to Maryland for care and treatments, they look at me pretty funny. Its rare that anyone asks me why, though. Oh, they probably ask behind closed doors. But, they don't ask me. No doubt people have said things about the costs of what I do, how I could afford it if I did it here, what kind of doctor I see that requires so much money. So, I'm going to explain it all. I'll tell you why I, and a whole lot like me, travel very far to do what we do.
If you've read some of these blogs or know me, you know that I have Ehlers-Danlos, chiari and a host of other disorders. Before you knew me, did you know what Ehlers was? No? Its likely that your physician didn't either. Ehlers is a multi system disorder, though. It affects my skin, bones, heart, GI system, nervous system and more. So, what do I do if my doctor doesn't understand it and your doctor doesn't understand it? I have to look for one that does. Most of us EDSers have been on that mission for years. We find doctors that say its only a joint disease, doctors that say we shouldn't have pain with it, doctors that say it has nothing to do with our heart, our thyroid, our brain. Some say its a somatic disorder, meaning its imaginary. Some say there is no treatment. And some just refuse to discuss it. I've met most of those. I called tons of doctors between home and Ohio just looking for one that could help us. I found a primary who knows more than some but still not everything. She's a great person but I have more needs than she can deal with. I found a geneticist in Cincinnati that gets it but it takes months to see him and he doesn't manage all of our care. Still, he and my PCP were enough if EDS had been my only problem with no complications.
Then, one day I learned that I had chiari. A piece of my brain was falling into my neck and no one understood that. I'd probably need a neurologist so I called them. I couldn't find any who would treat me. Some didn't know what it was, one said everyone has it. I saw one doctor who said my chiari was caused by my fat. Wow. I'd gotten so fat that the adipose tissue must have ran out of room and been shoved up into my head. Maybe that's what forced my brain into my neck. I kept calling people, reading doctor's online bios, researching things on the internet. And that's how I heard of Dr. Fraser Henderson. I was told that he was the greatest neurosurgeon, he specialized in chiari, he understood EDS. BUT he was in Maryland. Google maps told me that Maryland was 600 miles from me. No way was I traveling that far to see a doctor. Yeah. If you get sick enough, you will eat those words.
I continued to decline, lose some muscular function, have more neuro problems. I saw a dead end coming with my job because I was becoming so ill. So, the hubby and I discussed it. Over and over. I know I made him crazy. But, eventually, we decided we would go to Maryland. We'd make it into a vacation. I'd see this miracle performing doctor, the kids could see DC, maybe travel to the beach. One day last July, we packed up a rental truck and went to Maryland. The trip didn't turn into the vacation we planned because this doctor found things wrong that no one else had and ordered more tests and evaluations. I cried at that appointment and I never do that. He is the most compassionate doctor. He understands more details about EDS than I do and I have it. He found all of my problems within an hour. I was in shock. It wasn't long before my first surgery was scheduled with him. And then another one. Those surgeries gave me back the use of my legs and arms. So much of my pain was gone. He fixed what others didn't acknowledge. That's worth traveling so far isn't it?
Most of you know that we've worked hard to raise large amounts for deposits. There is a reason, though. Yes, he requires large deposits such as the $4000 I had to pay upfront for my tethered cord surgery. But, he is an out of network provider with my insurance. That means that after they pay him, he can balance bill me the rest. All of you know how much that can be, right? But, he cuts us slack. If we pay the deposit, we don't pay him another dime for that surgery. We don't come out in dept. We save thousands and thousands in the long run. And, we have the privilege of working with a surgeon who saves us, not butchers us.
This month I go back to see him again. I have to stay a few days longer than we expected. I have to have more tests ran. But, this time its all relating to my brain. Once again, we can't afford this trip but it has to be done. I much prefer to suck up the cost, beg a little, give up a lot and live. Chiari kills. I trust him to keep me alive.
If you've read some of these blogs or know me, you know that I have Ehlers-Danlos, chiari and a host of other disorders. Before you knew me, did you know what Ehlers was? No? Its likely that your physician didn't either. Ehlers is a multi system disorder, though. It affects my skin, bones, heart, GI system, nervous system and more. So, what do I do if my doctor doesn't understand it and your doctor doesn't understand it? I have to look for one that does. Most of us EDSers have been on that mission for years. We find doctors that say its only a joint disease, doctors that say we shouldn't have pain with it, doctors that say it has nothing to do with our heart, our thyroid, our brain. Some say its a somatic disorder, meaning its imaginary. Some say there is no treatment. And some just refuse to discuss it. I've met most of those. I called tons of doctors between home and Ohio just looking for one that could help us. I found a primary who knows more than some but still not everything. She's a great person but I have more needs than she can deal with. I found a geneticist in Cincinnati that gets it but it takes months to see him and he doesn't manage all of our care. Still, he and my PCP were enough if EDS had been my only problem with no complications.
Then, one day I learned that I had chiari. A piece of my brain was falling into my neck and no one understood that. I'd probably need a neurologist so I called them. I couldn't find any who would treat me. Some didn't know what it was, one said everyone has it. I saw one doctor who said my chiari was caused by my fat. Wow. I'd gotten so fat that the adipose tissue must have ran out of room and been shoved up into my head. Maybe that's what forced my brain into my neck. I kept calling people, reading doctor's online bios, researching things on the internet. And that's how I heard of Dr. Fraser Henderson. I was told that he was the greatest neurosurgeon, he specialized in chiari, he understood EDS. BUT he was in Maryland. Google maps told me that Maryland was 600 miles from me. No way was I traveling that far to see a doctor. Yeah. If you get sick enough, you will eat those words.
I continued to decline, lose some muscular function, have more neuro problems. I saw a dead end coming with my job because I was becoming so ill. So, the hubby and I discussed it. Over and over. I know I made him crazy. But, eventually, we decided we would go to Maryland. We'd make it into a vacation. I'd see this miracle performing doctor, the kids could see DC, maybe travel to the beach. One day last July, we packed up a rental truck and went to Maryland. The trip didn't turn into the vacation we planned because this doctor found things wrong that no one else had and ordered more tests and evaluations. I cried at that appointment and I never do that. He is the most compassionate doctor. He understands more details about EDS than I do and I have it. He found all of my problems within an hour. I was in shock. It wasn't long before my first surgery was scheduled with him. And then another one. Those surgeries gave me back the use of my legs and arms. So much of my pain was gone. He fixed what others didn't acknowledge. That's worth traveling so far isn't it?
Most of you know that we've worked hard to raise large amounts for deposits. There is a reason, though. Yes, he requires large deposits such as the $4000 I had to pay upfront for my tethered cord surgery. But, he is an out of network provider with my insurance. That means that after they pay him, he can balance bill me the rest. All of you know how much that can be, right? But, he cuts us slack. If we pay the deposit, we don't pay him another dime for that surgery. We don't come out in dept. We save thousands and thousands in the long run. And, we have the privilege of working with a surgeon who saves us, not butchers us.
This month I go back to see him again. I have to stay a few days longer than we expected. I have to have more tests ran. But, this time its all relating to my brain. Once again, we can't afford this trip but it has to be done. I much prefer to suck up the cost, beg a little, give up a lot and live. Chiari kills. I trust him to keep me alive.
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