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Replies to "Hi, @kyoto - good to hear from you. Glad to hear you've seen some symptom control..."
Spine Health | Last Active: Dec 9, 2023 | Replies (231)
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Hi, @kyoto - good to hear from you. Glad to hear you've seen some symptom control with the vimpat for the global amnesia associated with your surgery on the arachnoid cyst.
Sounds like you are experiencing very powerful headaches, with regular (I believe you were referring to over-the-counter) pain medications not working and pain from your forehead to the top of your head with strong nape of the neck pressure.
Hoping other members like @em87 @cathyinin @qball2019 @tee9 @jseibert may have some thoughts on this with your having experienced some headache prior to surgery, now having it again, and trying to tease out what is related to the surgery. @jenniferhunter may also have some thoughts on this.
Replies to "Hi, @kyoto - good to hear from you. Glad to hear you've seen some symptom control..."
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@kyoto and @lisalucier
The arachnoid cysts sound so much to me like Tarlov cysts, also called perineural cysts. They happen the same way and have all the same symptoms. I don't know what the difference is.I went to Dr. Feigenbaum in Dallas, TX in January and am currently fighting insurance. They denied my surgery claiming it is experimental and there is not enough medical evidence. I believe he also treats the arachnoid cysts. Someone from his office just told me that Rita, founder of Tarlov Cyst Foundation, just met with the national board of radiology (or something like that). She argued that all the "incidental findings" should be required to be documented. I would recommend going to http://www.tarlovcystfoundation.org Rita is very knowledgeable and could offer you some more information.The website has a ton of info. as well.
The headaches sound like mine too. My doctor says I'm having low pressure headaches. It happens when the cysts fill up with CSF fluid from the spinal canal. It doesn't leave enough fluid to cover the brain. Basically, your brain is being sucked inward which explains the symptoms. At least, that's how my doctor explained it to me.
I feel for you when you say you are losing precious time with your children and you are absolutely right! I feel the same way. I've been dealing with the cysts for over 15 years. I was not able to raise my children like I wanted to. They missed out on so much growing up. I also missed out on 15 years of my marriage. Thank god my husband is still trying to hold on for me. Things like this are just a couple of the many reasons radiologists and doctors need to look into these cysts. Undiagnosed, they can take a person's whole life from them!