Arachnoid Cyst

@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!

Hi - just wanted to introduce a member who is seeking some information on the source of symptoms -- whether they are arising from arachnoid cyst or from a traumatic brain injury (TBI), @neet. neet said an arachnoid cyst was seen on MRI in May, almost a year after experiencing the TBI with multiple fractures, bleeds and loss of sense of smell. Thought that members here could address your questions about whether this cyst will disappear gradually and which symptoms may be from the TBI and which are from the arachnoid cyst.

@neet - which symptoms are you wondering about the most, regarding whether the TBI or the cyst is causing them?

I wonder most about the loss of smell, tinnitus and weird feeling in head when climbing steps or looking upwards. Thanks!

Thanks for letting us know the symptoms you are wondering about most and whether they are due to the arachnoid cyst or the traumatic brain injury, @neet. Hoping members here like @cathyinin @qball2019 @em87 @gloriajean @jseibert @kyoto can add some insights from their experiences with arachnoid cyst to see if these symptoms — the loss of smell, tinnitus and weird feeling in head when climbing steps or looking upwards — might be similar to what they have gone through.

Did your doctor have any thoughts on what your symptoms may have arisen from @neet? Have you received any treatment for them yet?

Neurologist said all symptoms from the TBI and Arachnoid Cyst is nothing to worry about unless I start having severe headaches seizures and vomiting. Just don’t know what to believe.

Hello, I am sorry to hear about your unidentified symptoms. I have read quite a lot about subarachnoid cysts over the past three years, and I had surgery for one in summer 2017. At that time, I was initially told to go home and not worry by the first neurologist. My wife was getting frantic with my memory loss and confusion. She kept pushing and within a couple of weeks, I had a definitive evaluation that I needed immediate surgery. The surgery was highly successful. At about that time, I had developed tinnitus, but the surgeon ruled out any connection between it and the cyst. I have had no problem with smell, and I don't recall anything about it from the reading I have done.

On MRIs, a cyst can appear as a milky white, or dark, blob at the edge or the middle of the brain. They can be pretty large. This is the first image from Wikipedia. https://en.wikipedia.org/wiki/Arachnoid_cyst

My experience seems to be that the location of the cyst can exert specific impacts on neurological function, but often amnesia and dizziness, due to the pressure the cyst exerts on the surrounding tissue. Cysts develop when brain fluid gets trapped inside a normal membrane. As far as I know, these cysts usually do not resolve on their own. The treatment basically involves puncturing the cyst wall. If they are not causing trouble, it seems that surgery may not be necessary (which is why I got the "dont worry" advice from the first neurologist). But if the cyst is in an esssential area they can cause a lot of trouble.
Keep pushing for answers.
Let us know what you find out.

Thanks for your response. The MRI report stated stable nonenhancing 6mm Arachnoid cystic lesion.

That sounds quite different from my case, which was a large balloon type phenomenon. Do you know what this lesion is located exactly?

Posterior Fossa. Is that a bad location? Also, I do have severe hearing loss that begin in my early 40’s. That’s why I wonder if it’s always been there and not from the TBI. But I have had multiple MRIs due to having Multiple Sclerosis. It was never detected till after the TBI

Hii there,
Just new here @kellyo @cableblb How r u guys now?

My name is kavya , am 22 and was diagnosed with the same cyst 44mm in size . I live in India and here too nobody bothers much about the cyst, and I have been having deadly headaches, fatigue is just so so much , I have been lately not able to do anything because of this extreme fatigue and pain, my hands and legs stop moving sometimes and my veins swell up.. No reasons for all this .
I have been in a lot of pain.. Can't even go to college.. I m sick is something only I know and no one else.. Just that I m getting thinner and thinner too weaker for evryone to notice..

It's hard when no one gets u
And they thing it's just dramatic!