Pat ElliottExpertHERWriterGuideBlogger(reply to Anonymous)
Hi Debbie - I'm not a doctor or able to give medical advice, but I can say that your nervous system is interconnected and since you have pressure on a facial nerve this could manifest in varying forms of pain affecting various parts of your face.
In terms of finding the appropriate doctors and facility for care, the primary concern is of course finding the specialized expertise you need, and to find a facility as close as possible to your home. I want to again suggest that you contact the awareness and networking group that I have mentioned before so that you can learn from other patients on the East Coast and get their recommendations. http://arachnoidcystnetwork.com/acanetwork/home.php The woman who formed the group, Dia DiCristino, is an EmpowHER member and if you join the EmpowHER site you will be able to send her a direct message. Her user name on the EmpowHER site is DiaDiCristino. This is also a great topic to bring up in our new Arachnoid Cyst support group on EmpowHER, but you will need to register with the site to be able to join the group. Dia was one of the first people to join the group.
Registering for the site is easy. Just go to the home page which is at https://www.empowher.com/. In the upper right corner you will see the "Join us" box, and clicking that will lead you to the registration process.
Let me try to put this another way. I have a very rare form of leukemia. There are a lot of hospitals and physicians who treat leukemia. There are very few who are actually experts in the type that I have. My ability to live well and manage my medical condition is highly dependent on what I am able to learn from other patients.Through them I have identified the specialists and facilities that I would travel to if I were to develop complications that required expertise beyond what I am able to find in my community. Through them I have found solutions to treatment issues that are based on real world experiences and are not found in any text books, websites or doctor's offices. I am only suggesting to you what I have found to be the very best route to take for my own healthcare. Yes, you can contact Mayo and others all across the country, but if you start with talking to other patients you will likely get immediate answers for some of your immediate questions, good counsel on medical professionals and long term sources you can go to immediately when you have more questions.
I hope this helps you, and I'm glad you got in touch.
Take care,
Pat
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Hi Debbie - I'm not a doctor or able to give medical advice, but I can say that your nervous system is interconnected and since you have pressure on a facial nerve this could manifest in varying forms of pain affecting various parts of your face.
In terms of finding the appropriate doctors and facility for care, the primary concern is of course finding the specialized expertise you need, and to find a facility as close as possible to your home. I want to again suggest that you contact the awareness and networking group that I have mentioned before so that you can learn from other patients on the East Coast and get their recommendations. http://arachnoidcystnetwork.com/acanetwork/home.php The woman who formed the group, Dia DiCristino, is an EmpowHER member and if you join the EmpowHER site you will be able to send her a direct message. Her user name on the EmpowHER site is DiaDiCristino. This is also a great topic to bring up in our new Arachnoid Cyst support group on EmpowHER, but you will need to register with the site to be able to join the group. Dia was one of the first people to join the group.
Registering for the site is easy. Just go to the home page which is at https://www.empowher.com/. In the upper right corner you will see the "Join us" box, and clicking that will lead you to the registration process.
Let me try to put this another way. I have a very rare form of leukemia. There are a lot of hospitals and physicians who treat leukemia. There are very few who are actually experts in the type that I have. My ability to live well and manage my medical condition is highly dependent on what I am able to learn from other patients.Through them I have identified the specialists and facilities that I would travel to if I were to develop complications that required expertise beyond what I am able to find in my community. Through them I have found solutions to treatment issues that are based on real world experiences and are not found in any text books, websites or doctor's offices. I am only suggesting to you what I have found to be the very best route to take for my own healthcare. Yes, you can contact Mayo and others all across the country, but if you start with talking to other patients you will likely get immediate answers for some of your immediate questions, good counsel on medical professionals and long term sources you can go to immediately when you have more questions.
August 13, 2010 - 4:31pmI hope this helps you, and I'm glad you got in touch.
Take care,
Pat
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