Arachnoid Cyst

Hello @cmay5691, I would like to add my welcome to Mayo Clinic Connect along with @lisalucier and other members. I can understand being apprehensive about having arachnoid cyst surgery. I think it can be a little scary for anyone. I'm hoping others who may have had the surgery can share their experience here. The National Organization of Rare Disorders has some information here on Arachnoid Cysts and mentions how far along surgeries have come. Read the section under Standard Therapies where it talks about surgery techniques.

-- https://rarediseases.org/rare-diseases/arachnoid-cysts/

John

I cannot be much help but it in touch w the person who also had cyst for forward help. I have Lewy Body Dementia myself& was shocked. Pray u get some help so u can live a normal life! Sarah49

Hello @cmay5691

Welcome! I'm so glad that you posted your concerns here on Connect.

Yes, surgery for rare disorders is difficult to face. I can certainly understand your apprehension and desire to avoid surgery. I hope that the information John Bishop posted will be helpful to you in facing this surgery, if you decide to go through with it.

Your symptoms sound very difficult to live with. Please remember that surgery techniques have improved over the years. Have you sought a second opinion from a doctor who has done this type of surgery often? If not, that might be a good first step. Having a confident, experienced doctor can help you to feel more positive regarding the outcome. Are you near a Mayo facility (Minnesota, Florida or Arizona).

Another member, @rose4622, had brain surgery at Mayo in Arizona several months ago. Perhaps she will join this conversation and share her thoughts and experience with you.

Vestibular Therapy is a great help for dizziness and balance problems. After your previous surgery did you have some Vestibular Therapy to help with your recovery?

My appointment is on 12-4 with a neurosurgeon. All I know is they called it an arachnoid cyst and I've been looking up info on them and worried about surgery being what they suggest. I have what I thought was called a "wen" on my head that I figured was the cyst they were talking about. I wasn't worried about that too much until I looked up about an arachnoid cyst and where one of those is located. I don't think they are referring to the "wen" on my head but something else. Trying not to worry until I go to my appointment but my anxiety gets the better of me. I will post an update after I see the doctor on the 4th.

From Sarah49,
Pray your surgery goes well!! I am understand how anxious u are. I would be too! God Be With You

Hello. I have been having intense headaches and dizziness, numbness and tingling, and "brain fog". I had an MRI done and there is an arachnoid cyst located towards the front right side of my parietal lobe. It is 5.8 cm x3.8 cmx 2.7cm, that is an increase from 5.1 x 2.8 x 2.4 two months prior. I see a neurologist in January but the doctors in the ER said they didn't think it was what was causing my symptoms. I don't know what to do or who to consult at this point.

This is the original CT. According to my MRI it is larger now.

Hello @em87, welcome to Mayo Clinic Connect. You are already taking the first step. You are being an advocate for your own health. I would be have the same concerns as you do. You mentioned the doctors in the ER said they didn't think it was what was causing your symptoms and you have an appointment with a neurologist in January. Are you able to talk to the neurologist and possibly move up your appointment based on your latest MRI results? Also that the doctors in the ER didn't think that was causing your symptoms?

John

I've tried moving my appointment up but they said the best they could do is put my name on the cancellation list. I've been waiting since August. The original ER doctor was concerned and at the time I had been having a headache for 8 days with no relief. He tried to transfer me out but they wouldn't accept me because I had been having headaches prior to that event so it wasn't considered acute. The neuro he consulted with didn't seem concerned and so I followed up with my regular doctor. My regular doctor set up the neuro referral and when I called to confirm my appointment they said the referral said it was for migraines and didn't even mention the cyst at all. That surprised me since it's kind of big. I'm just so tired all the time and even now have an intense headache. It seems that many neuros think that these cysts don't cause issues. I wish they could see the overwhelming amount of people who DO in fact suffer symptoms. My headaches, fatigue, and dizziness have become so bad that I am no longer working and it's really impacting my life. I just want my life back.

Hello @em87, I am sorry to hear that you are suffering with such discomfit. Something that you wrote especially caught my attention. That was, "It seems that many neuros think that these cysts don't cause issues." That was the same experience that I had. I had a sub-arachnoid cyst, but the neurologist said that it can be left as it is. I subsequently found, in wikipedia or somewhere, that this is a general clinical position about such cysts. I was surprised because mine was huge, like yours. My wife couldn't accept this assessment, partly because I had severe memory disturbance, due to the position of my cyst. We ended up in another hospital, where the doctors quickly recommended surgery. I wasn't happy about that at first, but the surgery was successful, through a small hole in the top of my forehead. (The scar is really minimal). The change post-surgery was dramatic. And that was due to the relief of pressure the cyst was exerting. It may well be the same in your case. In any event, I urge you to keep persisting. Best wishes, David