Hi Grazyna - It's frustrating to read about your continuing problems in getting the care you need, and I know it must be even more frustrating for you. Your husband, bless his heart, wants to help, so he's looking for a solution too. If I was personally in your shoes I would make obtaining specialized treatment for the cyst my top priority. To do that I would see the local neurosurgeon AND I would get a second, expert opinion. Maria Richmond has previously provided information in an earlier comment on how to get a second opinion from one of the top experts in the world, someone who deals with these cysts on a regular basis. I hope you will do that or find a local expert.
As far as the neurostimulators, you could view this as something you are researching in your continuing quest to get the help you need. Going to an appointment and learning information is not a commitment to doing this unless you want it to be. I would keep in mind, however, that doctors will push the services that they provide in their specialty.... just as a burger joint will sell you burgers. If what you really need is a pizza the burger joint isn't going to sell you one.
I understand being scared and feeling alone. I'm going to suggest you get in touch with Dia DiCristino who founded an awareness and networking group for people with arachnoid cysts, and is an EmpowHER member. Dia may know people in your area who can help you sort out the information you're getting and evaluate it. I see in looking at the site that you're already a member.
http://arachnoidcystnetwork.com/acanetwork/home.php
I also suggest you bring someone with you to the appointment with the neurosurgeon who can take notes for you. You will get a lot of information in a short period of time that would be hard for anyone to fully absorb. It's common for people who are seeing a specialist to bring someone with them to help them better understand the information they're getting. Prepare a list of questions in advance so you can be sure what you need to know is addressed. If the physician objects to your list of questions, or to your having a companion, then then that's not a physician you would want to have treating you.
I'd also be giving some thought to what you will do if the neurosurgeon says you need surgery. There's a lot to prepare for prior to major surgery as well as a lot to learn.
This may sound strange but please do what you can to move from "scared" to "determined" to get your needs met. I know you don't feel well, and I know this is hard. You are the only one who can be your own best advocate and cut through the clutter and bureaucracy of our healthcare system to get your needs met. It may take getting mad to do this, and if so that's okay.
Grazyna, I hope this helps you. I am talking to you as someone who is personally living with getting a leukemia diagnosis that I got just six months ago. It has taken a lot of energy for me to research information, get second opinions and get to the right doctors and treatments. I don't advise you lightly, but with first hand knowledge of what will help.
Let me know what you think, and take good care of yourself.
Pat
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Hi Grazyna - It's frustrating to read about your continuing problems in getting the care you need, and I know it must be even more frustrating for you. Your husband, bless his heart, wants to help, so he's looking for a solution too. If I was personally in your shoes I would make obtaining specialized treatment for the cyst my top priority. To do that I would see the local neurosurgeon AND I would get a second, expert opinion. Maria Richmond has previously provided information in an earlier comment on how to get a second opinion from one of the top experts in the world, someone who deals with these cysts on a regular basis. I hope you will do that or find a local expert.
As far as the neurostimulators, you could view this as something you are researching in your continuing quest to get the help you need. Going to an appointment and learning information is not a commitment to doing this unless you want it to be. I would keep in mind, however, that doctors will push the services that they provide in their specialty.... just as a burger joint will sell you burgers. If what you really need is a pizza the burger joint isn't going to sell you one.
I understand being scared and feeling alone. I'm going to suggest you get in touch with Dia DiCristino who founded an awareness and networking group for people with arachnoid cysts, and is an EmpowHER member. Dia may know people in your area who can help you sort out the information you're getting and evaluate it. I see in looking at the site that you're already a member.
http://arachnoidcystnetwork.com/acanetwork/home.php
I also suggest you bring someone with you to the appointment with the neurosurgeon who can take notes for you. You will get a lot of information in a short period of time that would be hard for anyone to fully absorb. It's common for people who are seeing a specialist to bring someone with them to help them better understand the information they're getting. Prepare a list of questions in advance so you can be sure what you need to know is addressed. If the physician objects to your list of questions, or to your having a companion, then then that's not a physician you would want to have treating you.
I'd also be giving some thought to what you will do if the neurosurgeon says you need surgery. There's a lot to prepare for prior to major surgery as well as a lot to learn.
This may sound strange but please do what you can to move from "scared" to "determined" to get your needs met. I know you don't feel well, and I know this is hard. You are the only one who can be your own best advocate and cut through the clutter and bureaucracy of our healthcare system to get your needs met. It may take getting mad to do this, and if so that's okay.
Grazyna, I hope this helps you. I am talking to you as someone who is personally living with getting a leukemia diagnosis that I got just six months ago. It has taken a lot of energy for me to research information, get second opinions and get to the right doctors and treatments. I don't advise you lightly, but with first hand knowledge of what will help.
Let me know what you think, and take good care of yourself.
April 7, 2010 - 6:00pmPat
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