So it's been...over a year since I've least written. And I have no excuse other than - life happens. Moving on.
After my surgery, I saw a great improvement in my symptoms for about 3 months. Naturally, I was thrilled. Unfortunately, it didn't last. Slowly but surely, my symptoms started coming back, and by my one year post-surgery check up, I was back to feeling the way I did pre-surgery. So, I decided to check out a place in Long Island that was known for treating people with Chiari Malformation, to see if they had any ideas (this is the Chiari Institute, where I saw Dr. B). It was while I was there that the possibility of my having Ehlers-Danlos Syndrome (or EDS) was first mentioned (EDS is a connective tissue disorder that, in my case, causes the joints to be unstable; for more information, please visit the Ehlers-Danlos National Foundation). And while I opted not to stay with the doctors in Long Island, I did follow their recommendation to find out if I had EDS. I ended up visiting a geneticist (Dr. F) located in Maryland who specializes in EDS and after some testing, she confirmed Dr. B's suspicions. Which meant I had another chronic disorder to add to my list.
I decided to stay with my doctors at Johns Hopkins and we settled into a routine of looking for a combination of medications that would work for me, with medications being rejected continuously either because they didn't work, or the side effects were terrible. And I continued to have terrible migraines and on-and-off joint pain (thanks EDS!) for about 2 years.
Then, in December of 2011, I found myself suffering from one of the most intense migraines of my life. I was completely miserable. I couldn't eat, I couldn't sleep, I could barely function. I ended up staying in the local hospital for a few days on heavy duty painkillers before I was transferred to the Jefferson Neurosurgery Unit, where they did numerous blood tests, a spinal tap, and had a neuro ophthalmologist come in to test my eyes. In the end, they concluded that I had viral meningitis. I was transferred to the neurology section were I spent a delightful few days getting to know my roommate (a heavily medicated old woman who kept turning on her light and screaming for her husband, which did not help my migraine at all - even just thinking about her now pisses me off, though I know it wasn't her fault) before I was sent home with a bunch of painkillers and a referral to the Jefferson Headache Center.
If you recall, I had been to the Jefferson Headache Center before and had left because I had issues with the doctor. However, the doctor in the neurology unit at the hospital assured me that Dr. A, who I had previously seen there, was no longer with the Headache Center (in fact, he was no longer in the country!) and he strongly believed they could help me. Since Johns Hopkins wasn't helping me much anymore, I decided to give it a try.
Coming Soon - Part Five
After my surgery, I saw a great improvement in my symptoms for about 3 months. Naturally, I was thrilled. Unfortunately, it didn't last. Slowly but surely, my symptoms started coming back, and by my one year post-surgery check up, I was back to feeling the way I did pre-surgery. So, I decided to check out a place in Long Island that was known for treating people with Chiari Malformation, to see if they had any ideas (this is the Chiari Institute, where I saw Dr. B). It was while I was there that the possibility of my having Ehlers-Danlos Syndrome (or EDS) was first mentioned (EDS is a connective tissue disorder that, in my case, causes the joints to be unstable; for more information, please visit the Ehlers-Danlos National Foundation). And while I opted not to stay with the doctors in Long Island, I did follow their recommendation to find out if I had EDS. I ended up visiting a geneticist (Dr. F) located in Maryland who specializes in EDS and after some testing, she confirmed Dr. B's suspicions. Which meant I had another chronic disorder to add to my list.
I decided to stay with my doctors at Johns Hopkins and we settled into a routine of looking for a combination of medications that would work for me, with medications being rejected continuously either because they didn't work, or the side effects were terrible. And I continued to have terrible migraines and on-and-off joint pain (thanks EDS!) for about 2 years.
Then, in December of 2011, I found myself suffering from one of the most intense migraines of my life. I was completely miserable. I couldn't eat, I couldn't sleep, I could barely function. I ended up staying in the local hospital for a few days on heavy duty painkillers before I was transferred to the Jefferson Neurosurgery Unit, where they did numerous blood tests, a spinal tap, and had a neuro ophthalmologist come in to test my eyes. In the end, they concluded that I had viral meningitis. I was transferred to the neurology section were I spent a delightful few days getting to know my roommate (a heavily medicated old woman who kept turning on her light and screaming for her husband, which did not help my migraine at all - even just thinking about her now pisses me off, though I know it wasn't her fault) before I was sent home with a bunch of painkillers and a referral to the Jefferson Headache Center.
If you recall, I had been to the Jefferson Headache Center before and had left because I had issues with the doctor. However, the doctor in the neurology unit at the hospital assured me that Dr. A, who I had previously seen there, was no longer with the Headache Center (in fact, he was no longer in the country!) and he strongly believed they could help me. Since Johns Hopkins wasn't helping me much anymore, I decided to give it a try.
Coming Soon - Part Five
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