Thank you for the nice things you say. I want you to know that I was very scared too, of surgery. It is a very normal feeling and reaction to be scared when hearing you need brain surgery. I had to keep focused on getting better and feeling better, and that with mine, I had no choice. I "had" to have it or there would be consequences.
My sinuses felt pressured too. I thought I had sinus trouble, but eventually learned that it wasn't my sinuses, it just felt like that due to the cyst putting pressure on my sinuses and creating "full sinuses" trouble feelings. Once I had the surgery, that feeling went away. Now, if I do have sinus infections (which I do get more often due to having such a large cyst and it compromising my sinuses) it will give me the feeling of too much pressure (like cyst pressure). It will make me feel like I am getting back under pressure when it is just my sinuses. lol So, I deal with both...one mimicking the other and one causing problems for the other. Needless to say, I take sudafed regularly.
As far as finding a doctor or neurosurgeon, I would just start checking with my insurance plan as to who you are allowed to see. If you can see anyone...you may want to consider traveling if need be. As I've stated before, I was living in NM and traveled 8 hours to Phoenix for both of my surgeries. Then had to go back for the brain sagging and chiari problems. But it was well worth it to get the care I got. The doctors out there at Barrows Neurological Institute are amazing! The nurses are amazing! They have an awesome neurological floor where I stayed after my two days in ICU. It was a very good experience. ALL the doctors are caring, attentive and awesome. I cannot say enough about them. My aunt even traveled from Chicago to Barrows in Phoenix for her shunt surgery. Just a thought.
I will see what is wrong with my blog and why you cannot post messages on it yet. I will let you know.
I hope you find the right doctor. Never give up. But do not let it get too bad....your symptoms etc. I did get really bad with pressure because I had no insurance due to my husband losing his job at the most inopportune time, and I could hardly see straight. And I had to wait to get medical treatment due to no insurance, but the minute we had it, I was in Phoenix and glad I went! Other than Phoenix, it may just take some time finding the right neurosurgeon in your hometown. Talk to other doctors, like your primary, ENT, etc. to find out who they'd recommend. They may each have a different doc they recommend and you could see both and decide for yourself who you like and trust.
I will keep you in my thoughts and prayers. I will let you know, as I said, what happened with my blog at arachnoidcystsupport.blogspot.com. Take care and please keep me posted! But please, try to not be too frightened of brain surgery. The chances of something going wrong today, with all they know and do with the brain, are very slim. The benefits, more than likely, will out weigh the risks. Think about and focus o n the possibilities of getting better....how much better you will feel! If your neurosurgeon recommends surgery, do not block it out....consider it seriously!
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Hi Debbie-
Thank you for the nice things you say. I want you to know that I was very scared too, of surgery. It is a very normal feeling and reaction to be scared when hearing you need brain surgery. I had to keep focused on getting better and feeling better, and that with mine, I had no choice. I "had" to have it or there would be consequences.
My sinuses felt pressured too. I thought I had sinus trouble, but eventually learned that it wasn't my sinuses, it just felt like that due to the cyst putting pressure on my sinuses and creating "full sinuses" trouble feelings. Once I had the surgery, that feeling went away. Now, if I do have sinus infections (which I do get more often due to having such a large cyst and it compromising my sinuses) it will give me the feeling of too much pressure (like cyst pressure). It will make me feel like I am getting back under pressure when it is just my sinuses. lol So, I deal with both...one mimicking the other and one causing problems for the other. Needless to say, I take sudafed regularly.
As far as finding a doctor or neurosurgeon, I would just start checking with my insurance plan as to who you are allowed to see. If you can see anyone...you may want to consider traveling if need be. As I've stated before, I was living in NM and traveled 8 hours to Phoenix for both of my surgeries. Then had to go back for the brain sagging and chiari problems. But it was well worth it to get the care I got. The doctors out there at Barrows Neurological Institute are amazing! The nurses are amazing! They have an awesome neurological floor where I stayed after my two days in ICU. It was a very good experience. ALL the doctors are caring, attentive and awesome. I cannot say enough about them. My aunt even traveled from Chicago to Barrows in Phoenix for her shunt surgery. Just a thought.
I will see what is wrong with my blog and why you cannot post messages on it yet. I will let you know.
I hope you find the right doctor. Never give up. But do not let it get too bad....your symptoms etc. I did get really bad with pressure because I had no insurance due to my husband losing his job at the most inopportune time, and I could hardly see straight. And I had to wait to get medical treatment due to no insurance, but the minute we had it, I was in Phoenix and glad I went! Other than Phoenix, it may just take some time finding the right neurosurgeon in your hometown. Talk to other doctors, like your primary, ENT, etc. to find out who they'd recommend. They may each have a different doc they recommend and you could see both and decide for yourself who you like and trust.
I will keep you in my thoughts and prayers. I will let you know, as I said, what happened with my blog at arachnoidcystsupport.blogspot.com. Take care and please keep me posted! But please, try to not be too frightened of brain surgery. The chances of something going wrong today, with all they know and do with the brain, are very slim. The benefits, more than likely, will out weigh the risks. Think about and focus o n the possibilities of getting better....how much better you will feel! If your neurosurgeon recommends surgery, do not block it out....consider it seriously!
Take care-
March 15, 2010 - 2:30pmMaria
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