Comments on: One Down, Many More To Go

By: Kirsten Uhler

Kirsten Uhler — Wed, 09 Nov 2011 05:41:06 +0000

Thank you, Dottie. I have been doing well since my craniotomy and radiation therapy. I hope all goes well with you too! Other than having to take the medications, and of course having the surgeries, I can’t complain. :-)

By: Dottie

Dottie — Wed, 02 Nov 2011 08:16:27 +0000

Thank you so much for sharing! I will be seeing a specialist this Friday and we suspect this is what I have. How are you now? I hope all is well =)

By: Kirsten Uhler

Kirsten Uhler — Wed, 16 Jun 2010 16:49:42 +0000

@Danielle — Thank you. Mostly what I remember about having a cerebrospinal fluid leak is the constant throbbing headaches. They seemed to be alleviated some while I was lying down. While standing or sitting upright I felt dizzy, and I was also experiencing a lot of clear fluid drainage from my nose.

I just had radiation therapy a few months ago to hopefully kill anything that might be left after my latest surgery–the craniotomy. My doctor said it likely caused more damage to the healthy cells as well, so it is possible that I may need to actually increase and/or add to my list of medications.

It would be nice if you could stop the hormone drugs, or at least reduce them. I understand your anxiety, and I’m sorry it’s causing you such frustration. It’s nice to find others who are going through the same thing and to be able to support each other.

By: Danielle Monahan

Danielle Monahan — Wed, 16 Jun 2010 03:02:20 +0000

I was wondering how you knew you were having a CSF leak? The hospital where I had my surgery is a teaching hospital, which is awesome, but I feel like I got a lot of different answers to my questions. This leak and the worry of the tumor grawing back is my greatest now. Also I am still on my hormone drugs and they added one more since the surgery. I am taking the cabergoline you mention earlier because I had a prolactinoma. My goals are to stop taking the meds, have no leak and have the tumor completly gone. My doctor won’t do a scan on me for another 5 months which is frustrating. I am very glad to have found your blog, thank you so much for sharing. I hope you are doing well!

By: Successful Surgery

Successful Surgery — Sun, 24 May 2009 03:14:03 +0000

[...] transsphenoidal surgery to remove my pituitary macroadenoma went well, and I am happy to be home. Dr. Florman anticipated [...]

By: Kirsten Uhler

Kirsten Uhler — Mon, 30 Mar 2009 12:50:06 +0000

@Brian and Jason: Thank you guys. I appreciate your concern and support.

@Steven: Like, I know..I AM awesome! ;-) Thanks.

By: Steven Pam

Steven Pam — Mon, 30 Mar 2009 05:23:07 +0000

Like, bummer, Kir. Good luck, etc! You’re awesome :-)

By: Jason Pooler

Jason Pooler — Sun, 29 Mar 2009 22:05:00 +0000

My thoughts are with you and your family. We are here for you for whatever you and your family needs!!

By: Brian

Brian — Sun, 29 Mar 2009 21:20:37 +0000

Kirsten – I’m a friend of Brent. Just wanted to reach out and let you know that I care.