Our Stories

These are the stories I've been collecting since 2003. Hopefully we'll make this whole site more streamlined so people can add their own stories but for all intents and purposes this was the original arachnoidcysts.org.


Au début du mois de février 2004 je commence à avoir des maux de têtes presque tous les jours (du coté gauche toujours au même endroit), pendant deux semaine je prend du paracetamol (750 mg) qui calme la douleur. Après deux semaine de maux de tête quotidien, le paracetamol ne fait plus aucun effet sur mes migraines ; je change le paracetamol pour de la novalgine (noramidopyrine).

Les migraines au bout de la troisième semaine se font de plus fréquentes et plus beaucoup plus fortes; je décide d'aller voir un médecin géneraliste parceque mes maux de têtes sont anormales je suis en bonne santé, je n'ai jamais eu mal à la tête de ma vie.

Add a comment

A little over a year ago Chris was having problems sleeping. He couldn't fall asleep and he couldn't stay asleep.(a symptom?) He was given sleeping pills.

Then, at the young age of 33 he seemed to be a candidate for Viagra. (symptom?) I blamed myself for that part. Don't I make him feel special, don't I turn him on, is he unhappy with me???...This was a very hard time for us. We talked about it but even after 13 years together it was uncomfortable. Finally the sleeping problems subsided and we learned to adjust to the other problem.

Add a comment

I have arachnoid cysts in my brain, I suffer from MOST of the symptoms listed for them, including severe migraines, nausea, vomiting, balance problems, short term memory issues, insomnia and a few others I've probably forgotten. I'm SO tired of these doctors telling me my headaches have NOTHING to do with my cysts...BULL. I'm joining your site, I really need to figure out how to deal with my problems, because it appears I am 'stuck' with them no matter what now. My cysts are connected to the flow of spinal fluid in my brain so draining them is not a good option for me. This condition has really messed with my life, and I'm just trying to muttle through feeling half way human. And it seems my doctors do not want to 'help'. I do have digital pictures of my MRI and my cyst are what I would consider 'large'. I really need help getting medical help with this condition :-(

I am 26 years old and I live in London.
 
I was diagnosed in 1998 with a left temporal AC. I do not suffer from pain.
 
When I was 16 or 17 I started to become mentally unwell. Eventually my symptoms made me uncontrollable because I was always agitated. I really flipped it. 

Add a comment

Hi all !!
 
First I would like to say I am blown away by this websites content.In 1991 I was diagnosed with having an arachnoid cyst. It was found during a test I was having for a balance problem, "felt like I was drunk all the time". At first the doctors saw the "growth in the background" when looking into the inner ear, and they diagnosed me with labrinthytis a inner ear infection, and the growth after having another test was an arachnoid cyst. I was told it was harmless and to just have it checked every couple of years to see if it grows any. I left it at that, excepted the ear infection, and went on with my life.

Add a comment

My problems started a little over two years ago when I suffered from temporary hearing loss in my left ear. I'm 53 years old and I already had noticed a slight hearing problem and planned to have my hearing tested. I went to an ENT who found I have hearing loss in both ears about the same, especially in the range of human speech. Hearing aids were recommended and I subsequently obtained a pair and use them on occasion to improve me ability to hear people. However, the temporary hearing loss situation remained unexplained. This loss was almost complete loss in my left ear that would be there when I woke up and last the rest of the day. My ENT suggested an MRI and that showed a fairly large arachnoid cyst (about 4 X 5 cm) in my left temporal lobe. My ENT suggested seeing a neurologist about the cyst, which I did, and which began my first real experience with the medical system.

Add a comment

I'm 57 years old & was diagnosed with a large left temperal ac in Oct. 2003. Due to the size of the cyst, baseball size, & my condition at the time I had surgery on Nov. 5 2002. Due to the situation at the time, my wife was dieing of cancer, many of the questions that should have been ask were not. The symptoms that were happening I put off to stess from the eight years carring for my wife through all the treatments, surgeries & other events. When I drove home from work one day & it was difficult to stay concious along the way, I called our family doctor & he rushed an MRI of my head. I had the test on Saturday & Monday morning he called to say they had an appointment with the surgeon & to be their. He told me I had to have surgery ASAP or I would likely die from a hemhorage or a stroke & neither of us were in any condition to argue the situation. I had very little idea what an AC was until I recovered from the first surgery & started asking questions as to what had happened.

Add a comment

Hi, my name is Debbie and I am 45 years old. Let me start by saying that my entire life I have struggled with headaches and always being extremely tired. I have been to so many doctors and have had every test run on me possible.

Last year I was diagnosed with breast cancer and had surgery and radiation therapy to conquer that. Just recently I went to yet another doctor to see if there was anything that could be done about my headaches and tiredness. I have been told that the tiredness is because of the radiation and that it will go away over time.

Add a comment

I am 24 years old w/a sub arachnoid cyst on my left temporal lobe. I am going to try and tell you my story without writing a novel.
 
After I had my son (he’s 5 now), I began having ‘migraines’. Terrible, horrible headaches accompanied by numbness. Numbness in my hands, left arm, left leg and left side of my face. I was told they were migraines. But I didn’t have the ‘aura’ that migraine sufferers have, the sensitivity to light, sound, etc. It was just a horrible pressure headache. I can remember several times wanting to slit my damn head open. Just a little cut to relieve the pressure!! Demerol became my best friend. My PCP was insistent that it was a migraine. (I don’t have him anymore!!!). Finally, my PCP’s Assistant decided maybe I needed an MRI. I thought to myself, yeah right, whatever they are going to think I am a damn nutcase b/c they aren’t going to find anything. Low and behold, she called back 3 days later, told me I had the AC, but that they were asymptomatic and could not possible be the cause of my problems. That was 5 years ago. I have been to at least 10 Neurosurgeons. All of them said the same, said they wouldn’t touch it, it’s too dangerous, yada, yada, yada.

Add a comment

My problems started on my birthday, July 2, 2003. We went out to dinner with some friends and I had two cocktails. Suddenly I said I need some air I was not feeling well-I never made it outside. I fainted and an ambulance was called. I passed out four times before I got to the hospital and my blood pressure (top number) went from 89 to 213. (Later I found out I was have seizures) I was in no real pain-only had a headache. They did a CT and found the arachnoid cyst.

Add a comment


Arachnoid Cyst Foundation email is info@acyst.org ~ 800-493-5022 ~ 10a-6p PST ONLY!

 

Back to Top

© 2017 The Arachnoid Cyst Foundation