Hello Sinusgirl

[BOBinFLA]

Welcome to the club no one wants to join. If you're reading this at least we know you're in the right place. Other newcomers sometimes get confused and post on the wrong pages and get lost. I'm starting this thread also to let other members know that you have a post on the Sticky: Leaker Roll Call page (#131). Not everyone looks at those "Sticky" pages right away.

This page here is for the daily posting of questions and replies. There are many knowledgable, helpful members of the forum who read the posts here on a regular if not daily basis. I know because they have definitely helped me out over the past couple of years. You can start your own new thread by clicking on the pen and ink bottle icon that reads "New Thread." That's on the left side above the blue title bar "Threads in Forum: Cerebrospinal Fluid (CSF) Leak."

Please post a reply here so I know you've read this. Thanks.

Best wishes, Bob

[sinusgirl]

I apologize that it has taken me awhile to respond, but I find the website a little difficult to navigate.

I am however, super excited to have this forum available to possibly answer the crazy questions that I seem to always be facing. The past several years have been hard to say the least, and it is a battle all the way. There seems to be very few doctor's that specialize in the issue that I have, and seem to not want to take me seriously. I have several repairs to my ethmoid sinus with fibrin glue, and now some bone. This causes problems, not to mention that I had a VP shunt put in last September.

The things that happen to me, I haven't been able to determine if they are low pressure, high pressure, sinus infections, etc. Still trying to work things out. Anyway, thanks for the welcome!

[BOBinFLA]

Hey there. No apology necessary. Navigating and using this site will take some getting used to.

Do not be surprised to find that you know more than many doctors about your condition. Just keep searching and questioning until you get what you want. You are your own best advocate. Family, friends, understanding, knowledgeable doctors, all can be of great help, but some can be a hindrance, too. (The physician of last resort (referral) is always the psychiatrist. It’s all in your head, you know.) Sometimes you just have to go with your gut.

We’ve all had to deal with all sorts of frustrating BS. Like the NS (Neurosurgeon) who kept my wife and me waiting in his waiting room and exam room some 4 hours past our scheduled appointment. We were just about to walk out when he finally came in. After about 5 minutes of hemming and hah-ing he said there was nothing he could do and wished me luck on my “journey.” What a waste!

Like I said I recommend you start your own New Thread. Since the title or beginning of this thread is “Hello, Sinusgirl,” some may skip reading it. I’d recommend something like “Help, please! Multiple problems.” Then reiterate some of the problems you noted in your reply above, refer to your Sticky – Leaker Roll Call post. Sometimes general questions are best, but you may be surprised at the helpful replies you get to very specific questions. Don’t be shy – we love crazy questions.

It would also be helpful to note what metropolitan area you live in or near. We have members spread all over the country plus Canada, Australia, and the UK. They can recommend which doctors to see.

Note: Every new reply bumps a thread back up to the top. Active members will keep track of their replies and yours. If a thread gets to be too long or you have to go off on a new tangent then starting another new thread can be good idea.

- Bob