So you had an MRI or Cat Scan of your brain for one reason or another, and suddenly you are hearing words that sound like a foreign language-arachnoid, cyst, posterior fossa, or maybe other words associated with this rare brain condition. Where do you go from here? What questions should you ask? Should you see another doctor? So many questions and not enough answers.
The first thing to do is calm down and not panic. It is scary to hear that you have a foreign body on your brain, and you may not be feeling well because of it, so it is even more important that you remain calm.
Typically arachnoid cysts are not dangerous. Typically they don’t even cause any problems for many people. But for a select few, they can develop a mind of their own and grow, and begin to put pressure on different areas of the brain. It depends on where the cyst is growing, how large it is, and if you are just one of the unlucky few that ends up having symptoms from your cyst.
If you have just been told that you have an arachnoid cyst, and you have been having odd symptoms, the first thing you should do is schedule an appointment with a neurosurgeon. This will require you to do your homework. Depending on your insurance plan, you may need a referral from your primary care physician. If you do not need a referral, do some research for your area and find a top neurosurgeon. When you call to schedule an appointment, you can inquire as to whether or not the doctor you have chosen deals with arachnoid cysts, and try to find out to the degree that he does.
While you are waiting for your appointment, go online and do your own research. There is a lot of information online today about arachnoid cysts. That is because more information is being discovered about them all the time. One website that has good information and is a supportive website is http://arachnoidcyst.org/. You can also try http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htmThis is another good website for a lot of general information about brain cysts.
I would also highly recommend keeping a diary. Tracking all your symptoms day-to-day will not only allow you to monitor your symptoms, but it will show your doctor how your symptoms fluctuate, and to what degree they are.
Rest – Getting plenty of rest when you are having brain symptoms is very important. Do not overexert yourself, but do try to carry on as close to a normal life as possible. It will help you to not fall into a depression as well as keep your brain active. But do rest periodically. When arachnoid cysts start to cause symptoms, some of the symptoms may include fatigue. Resting often will help to keep your energy level up as well as keep your mental abilities as sharp as possible.
When you finally get to see your neurosurgeon, and should he tell you that your symptoms are not related to your cyst but you feel they are, go for a second opinion. Many doctors (neurosurgeons) have a hard time buying into these cysts causing problems. This could be because reading from a textbook, they have read that these cysts do not “normally” cause problems. But they fail to realize that just because many of them do not, that does not mean that there aren’t those out there that do cause problems and symptoms.
If your neurosurgeon says he cannot help you, be willing and open to traveling outside of your state. Do research on neurosurgeons in neighboring states. Make copies of your medical records and get copies of your films on discs. Many times doctors will look at your records and films without you actually having to be there, and give you their opinion. They may charge a fee, but it is worth it over having to make a drive out of state, only to hear that they cannot, or will not help you. Never send original records for fear of them getting lost or not returned.
If you feel like you have extra pressure in your head, and you have been diagnosed with an arachnoid cyst, there is a possibility that it is being caused by your cyst. Arachnoid cysts are famous for building up walls inside themselves, like a honeycomb. Your CSF, or cerebral spinal fluid gets into these walled-off areas, and many times cannot find its way back out. This is what causes them to grow, and cause pressure.
Living with an arachnoid cyst can be frightening, but if you try to remain calm, enlist loved ones to help you gather your medical records if you cannot think clearly to do this, you can get organized and ready to meet the challenge of finding a physician who not only believes you, but is willing to treat your condition.
