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Hi @em87
I saw that you have the most recent response and that you are having surgery soon. I hope everything goes well and please update me one everything if you could.
I am 14 right now and i got diagnosed with a arachnoid cyst when I was 13. The cyst is located in between my brain and skull. I had symtoms like terrible headaches that will last days but just to come back the next day (which still go on), I would get light headed, my neck would start cramping up because of the pressure on my head, etc.
Everyday gets more torturous. Once I went to the ER for it I have had many doctor appointments every month. But, still the pain is there. They all say I’m too young to get sergury to get the tube next to my spine but I just want it to be gone so bad. It is so hard to focus in class when all I can think about is the pin point pain.
What do you guys do to deal with the pain? Is there any advise you can give me? I can not stand this anymore and I hope no one has to go through this. I hope you are doing well and your surgery goes successfully. Sending you my best wishes!
Replies to "Hi @em87 I saw that you have the most recent response and that you are having..."
I am so sorry you are going through this. Where is yours located? Both you and my daughter are in pain and I am
Looking for a specialist that deal with arachnoid cyst. I suggest you do the same. I’m not stopping her from any activities, but she can’t even go to school. She has had consistent headaches since Jan 7th. I mean on-going never stops gets less intense but always there. Are you still looking for help? Where have you gone this far?
Jen
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I just suggest keep trying to find someone who will truly listen. It's hard to do, I know. What ended up happening with me is that eventually they had tried every possible option to treat my pain medicinally. The neurologist told me that they had exhausted all the options for that then sent me to the neurosurgeon to discuss a possible resection. The neurosurgeon said this was basically the last option I had and that there is a 50/50 chance of this working. I jumped at the chance to have this removed because it is effecting my life badly. I've lost a good job due to the unrelenting headaches, I can't be the mother I want to be because I always feel tired and in pain, I've gained weight because I don't get out and do much because I am losing weeks upon weeks of my life fighting headaches that are "worst headache of my life" every time. Just keep trying to find the right doctor and don't give up, eventually someone will listen, hang in there 🙂