One Down, Many More To Go

Posted: March 29th, 2009 under health.
Tags: , , , , , ,

Sometime in early 2005 doctors discovered in me a small pituitary tumor. After a year and a half of drug therapy failed to reduce the tumor it was removed transsphenoidally in August of 2006. My neurosurgeon said it would probably not recur. It has.

A recent MRI scan revealed the tumor has grown to 2.5 cm, which is larger than it was before surgery in 2006. Due to the location of the tumor there is pressure on and deformation of the optic nerve. To check for damage an opthalmologist performed a Visual Field Test a few weeks ago. The results of this test are normal. Vision loss typically begins from each side of the field of vision and leads to tunnel vision and then blindness.

Dr. Jeffrey E. Florman, MD

Dr. Jeffrey E. Florman, MD

I was referred by my endocrinologist to a neurosurgeon, Dr. Florman. Dr. Florman is very personable and candid. My previous neurosurgeon assured us that the portion of tumor he was unable to remove would be cauterized and, therefore, unlikely to grow. Dr. Florman said these tumors always grow back. This tumor is growing very fast: about one centimeter in diameter per year. At the current rate I will require surgery every two years. Because of scarring and a weakening of the tissues, each successive surgery is more risky than the previous operation.

Dr. Florman advised me to consider radiation therapy after surgery. Radiation can significantly reduce the tumor’s rate of growth which would mean fewer surgeries.

My tumor, according to Dr. Florman, is not a prolactinoma, as diagnosed by my endocrinologists and previous neurosurgeon. The prolactin levels in my blood would be many times higher if the tumor was secreting. This explains why the tumor has not reacted to the tumor-reduction drug Cabergoline. He believes my tumor is a pituitary macroadenoma, which is a non-secreting tumor. I will continue the same pharmaceutical regimen indefinitely, including a daily growth hormone injection. Unfortunately, I might even have to take additional medications after the surgery.

Dr. Florman is concerned because of the cerebrospinal fluid leak I developed after my previous surgery. He expects I will have one this time, too. As a preventative measure he plans to take some fat from my belly and insert it into my nose to block the spinal fluid from entering. Before surgery I’m going to request he remove any excess fat stores he finds in my tummy and to make the right and left sides look even. He might as well do a tummy tuck while he’s in there. :-)

We are scheduling the operation for mid-May so it won’t interfere with school. In the meantime Dr. Florman wants me to pay attention to my peripheral vision. I told him that I would have Brent periodically sneak up on me, just to test it out. Any vision loss, if left untreated, would be permanent.

This news, obviously, was not pleasant to hear. I certainly appreciate my neurosurgeon’s candor. He thoroughly answered all our questions until we were satisfied. I’m feeling overwhelmed that I must deal with this tumor and it’s requisite surgeries, and frustrated that I have been getting so many different opinions and diagnoses. I am also stressed about the financial burden it is on our family (thanks to our inadequate U.S. healthcare system). I have been through this before and know what to expect. I have a lot of confidence in my neurosurgeon. Mostly I’m just numb. I have been so busy and preoccupied with everything else that I haven’t thought much about it, nor do I care to. Brent has been wonderful. He is my greatest support. He reminded me to “Change and improve what you can, don’t stress about things you cannot, and appreciate the good things in your life.”



9 Comments »

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

    Comment by Brian — March 29, 2009 @ 4:20 pm

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

    Comment by Jason Pooler — March 29, 2009 @ 5:05 pm

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

    Comment by Steven Pam — March 30, 2009 @ 12:23 am

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

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

    Comment by Kirsten Uhler — March 30, 2009 @ 7:50 am

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

    Pingback by Successful Surgery — May 23, 2009 @ 10:14 pm

  6. 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!

    Comment by Danielle Monahan — June 15, 2010 @ 10:02 pm

  7. @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.

    Comment by Kirsten Uhler — June 16, 2010 @ 11:49 am

  8. 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 =)

    Comment by Dottie — November 2, 2011 @ 3:16 am

  9. 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. :-)

    Comment by Kirsten Uhler — November 9, 2011 @ 12:41 am

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