Arachnoid Cyst

Hi Kellyo,

I was diagnosed with a Pineal Cyst. Many of my symptoms are the same as yours. I was told by my neurosugeon that the cyst (13mm x 8 mm) was begnine and not the cause of my symptoms. I disagree because I live with the symptoms and they are real. I've had so many other tests that there is no other possible reason. The space in our head is priime real estate and there is no room for anything extra up there!. Even a small cyst takes up space and causes pressure. The pressure mine causes does not show as hydrocephaly on the MRI. But it gives me symtoms. I have constant tinitis, often pulsatile when I do anything that causes exertion. Driving a car brings on episodes of increased diziness, as well a sessions at the computer. I even get diziness walking. Mild enough that I don't fall down, but it's there. What's really depressing is my lack of energy. I get fatigued very easily, and feel best when I can take on tasks at my own speed. This does not work well for my employer!

I'm still in the process of investigating treatment options. I have read blogs where people with cysts had them removed and the sysmptoms dissappeared. I'm hoping there is an easy fix.

I appreciate any insights to cysts in the noggin!

Jeep

Hi Kellyo, your situation sounds very familiar to what I am experiencing, 39 years old from Ontario, the onset of symtoms after an epidural. It seems you have done a lot of research as have I. It would be nice to compare notes.
Thanks, Andyo

Hi Andyo. My symptoms have changed a little bit, but the significant symptoms (fatigue, headaches) have remained the same. Why don't you inbox me and bring me up to speed on what your wife is going through and we can compare notes.

Thx 🙂
Kelly

Hi jeep. Yes your symptoms sound similar to mine. Your cyst is much larger than mine though and i am surprised your NS is not suggesting treatment.

I realize that you posted here back in August, however I don't think I replied to you. I apologize for that.

Anything new?

Hi Kellyo .. just new on here and saw your post and wondering if you have gotten any further in the medical field with your symptoms within our health care system. I live in Ontario as well. I had a bad fall just over six months ago with a concussion. I have had symptoms since which the doctor has diagnosed as post concussion syndrome. A 3 cm arachnoid cyst was found through an MRI but doctor says it is incidental and asymptomatic. I have had so much nausea and headaches the past few months. I do get a lot of sinus headaches but this is not that. I did have a few tremors in the spring but they have subsided. I don't want to automatically assume it is the cyst but I don't want to exclude it either. The doctor said it was likely there from birth but I also read they can come from head trauma as well. I find it hard to get much info on line about them.

Hi Kellyo,

I came across your story and wanted, like most people here, to follow up and see how things are? Did you ever get any treatment? What has your neurologist recommended?

I am currently 25 but when I was 23 I was diagnosed with an arachnoid cyst in my upper neck. I had similar symtpoms as tingling in my arm and leg on the left side. Saw a neurosurgeon but felt that he just automatically wanted to cut me open even though it wasn't effecting my activities of daily living.

Any input from you would be helpful! I've been told these are rare so it's helpful to see we're not the only ones out there with these types of cysts! Thanks!

Kah

<br />
Hi there, I have not had follow up in a couple of years on mine. I got a couple of opinions from neurosurgeons and no one seemed to think it was a big deal. <br />
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My symptoms seem to have declined and now I struggle with very low blood pressure. I have no idea why and the dr doesn\'t either. But no one has mentioned the cyst since. <br />
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I gave up trying to convince ppl that my cyst was giving me symptoms when every neurologist I saw told me these kinds of cysts don\'t cause symptoms. No one ever offered surgery to me. <br />
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Kelly<br />
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My MRI showed an arachnoid cyst that is 7 cm x 3.5 cm x 3.5 cm. I have headaches, dizziness, loss of balance, blurred vision, and numbness in my arms when I sleep. A neurosurgeon just told my doctor that no treatment was necessary. So we are getting a 2nd opinion. I am a 51 year old male. and have symptoms for 6 months. Can anyone advise me on this?

How are you doing, Brian? I am 48-year-old male. This year, I had an MRI that showed a large sub-arachnoid cyst. I didn't have your range of symptoms. But I had continuing headaches, and severe short-term memory loss. The neurologist told me that no treatment was necessary. My wife couldn't believe it, and we immediately sought a second opinion. The next doctor sent me for memory evaluation with the Weschler tests, and it turned out I was far, far below the average score. The doctor recommended surgery with endoscope through a small incision on top of my forehead. In the four to five-hour procedure, they cut a hole in the wall of the cyst ("fenestration") to allow the accumulated cerebral-spinal fluid to disperse, and reduce pressure. About a week post-surgery, the memory tests were repeated, and the memory disability had vanished. My scores were now well above average. Six weeks post-surgery, I feel largely over the problem.
My basic online reading tells me that subarachnoid cysts may be left untreated if they are asymptomatic. Since I was lucid, and not suffering a range of symptoms like you, I guess the first doctor thought I would be OK. That was a pretty bad mistake. I was explained by the second neurologist that my cyst position ("velum interpositum") was unusual, and it was directly bearing on the fornix (which is part of the memory-creation apparatus). Without intervention, I was at risk at permanent neurological damage.
I hope this helps you, or others in this situation.
David

Hello @kyoto,

Welcome, and thank you so much for sharing your story. I'm so glad that a second opinion could ensure you are following the best route toward better health. And I'm certain @cableblb and others in this discussion appreciate your insight.
Kyoto, we look forward to getting to know you better; let us know how the Connect community can help.