Friday, March 25, 2011

Appointment at Saint John's Brain Tumor Center

I am already an established patient with Dr. Daniel Kelly, but he moved to a new hospital since I last saw him in 2007. I had a follow-up appointment with him this week at Saint John's Health Center in Santa Monica, California. It was a good visit, and Dr. Kelly thoroughly addressed all my concerns about the titanium mesh and tumor. I should have gone back to see him sooner, but life has been busy. I blinked, and three years passed by! I am glad I went.

I flew into Ontario International Airport early Sunday afternoon and stayed with my parents while in town. That evening I went to dinner with family at a local restaurant.

My step-sister, step-dad, and me at the Market Broiler


The next day my mom and step-sister drove with me to Santa Monica for my MRI, which was scheduled for Monday afternoon. The traffic wasn't as bad as anticipated.

Skyline in Los Angeles

The price of gas on Santa Monica Blvd - in some places, it was $4.39/gallon for regular

John Wayne Cancer Institute is located across the street from Saint John's


The hospital is beautiful, and the staff is friendly and accommodating. Here's a picture of the inside of Saint John's Brain Tumor center:

A cafeteria and dining area are located on the second level - very nice!





I followed up with my neurosurgeon on Tuesday. He spent a lot of time discussing my situation and what he recommended for treatment.

Here's what we discussed:

Regarding the sphenoid sinus: Dr. Kelly arranged for me to have a CT angiogram of the brain to ascertain the location of the dislodged titanium mesh in relation to my carotid artery and view the current condition of the sphenoid sinus. The mesh is very close to but not on the carotid artery. It is encapsulated in bone, and the doctor is confident he can remove most, if not all, of the mesh safely. He likened it to removing a chunk of cement from my head. There appears to be some inflammatory bone growth in the sphenoid due to chronic inflammation.

Regarding the tumor: My labs returned normal with no excess growth hormone or prolactin detected, but the MRI reveals tumor enlargement. The tumor in the left cavernous sinus measured 8mm x 3mm in August 2010. The MRI I had this week shows this area now measures 11mm (1.1 cm) x 6mm. Also, the report said that an area on the right side of the sella is worrisome for regrowth of tumor and it measures 11mm x 7mm. Dr. Kelly has recommended that instead of having radiation to stop the growth, I should "undergo sellar exploration for removal of pituitary tumor and exploration of the left cavernous sinus tumor for possible removal." This would be done at the same time he removes the titanium mesh. Radiosurgery is not recommended because I have a perfectly good functioning pituitary, and radiation would likely damage it.

Click on the picture to enlarge


I left California on an early flight Wednesday morning, so I didn't have a lot of time alone to process everything from my appointment until I got to the airport.

Looking out the window at Ontario International Airport - snow-capped mountains in the distance


When the plane took off I gazed out my window and thought about the prospect of another brain surgery. Finally, it sunk in that this situation is far more complicated than the first surgery I had years ago. I buried my face in the corner of the window as tears began to fall.

My spirits lifted when I got home - the tulips my daughters and I planted last fall are in full bloom.

Click here to see more photos of my tulips

My husband helped our kids hang up decorations throughout the house and they each gave me a handmade card. A big "welcome home" banner greeted me in the kitchen.

Doorway I walked through when I got home




I've decided to move forward with scheduling surgery at Saint John's Health Center in California. However, the operation will not be in the immediate future because I need to get approval from my insurance first. In the meantime, I have much planning to do in the upcoming weeks.

Just the Facts *Updated*


It has been over five years since my surgery. My most recent MRI shows regrowth of tumor, but I am still considered to be in remission from acromegaly. I am not on any hormone replacement (never have been) because my pituitary is functioning adequately. I was diagnosed with a 2.5cm pituitary macroadenoma in May 2005. It was discovered incidentally via MRI when my ENT was looking for the cause of chronic left ear pain. He was the third ENT I saw regarding this matter; the two other ENT's said I had TMJ. 


I had the tumor removed via Endonasal Transsphenoidal Surgery by Dr. Daniel F. Kelly, at UCLA Medical Center (he is now at Saint Johns Health Center) in August 2005 without any pituitary damage. It was a functioning tumor that excreted excess GH and prolactin (pathology report confirmed this); also, part of the tumor had invaded my left cavernous sinus (see white arrow in MRI above - black dot underneath is my carotid artery). I was in the hospital for three days, including the day of my surgery. During the operation, I had a grade 1 CSF (cerebrospinal fluid) leak, which was repaired with collagen sponges, titanium mesh, and Bioglue. Because the leak was minimal, I did not have a lumbar drain. My post-surgery MRI revealed a 2mm area in the left cavernous sinus that was suspicious of residual tumor. However, my labs and pituitary function was normal, so it was assumed that I would likely go into remission, and the surgery was deemed a success.


For anyone who might be interested in what my symptoms and GH/prolactin numbers were, here’s that info below:

Presurgery Info - August 2005
IGF-1 415
GH – 4.85
Prolactin 27.5
Glucose Tolerance test - HGH FAILED to suppress below 3.5ng
*All other hormones were normal

My symptoms
Headaches (skull splitting)
No visual disturbances
Excessive sweating
Amenorrhrea
Chronic ear pain 
Pimples (more than usual)
Facial puffiness & swelling
Galactorrhea
Thickened skin on feet 
Hypoglycemic episodes


One year after surgery - August 2006
IGF-1 125
GH – 0.54
Prolactin 6.1
Glucose Tolerance test – HGH NORMAL suppressed below 1.5ng
*All other hormones REMAIN normal

Five years after surgery - August 2010
IGF-1 202
GH – 0.44
Prolactin 5.5
*All other hormones are normal

For a detailed graph of hormone levels: Click here

Six weeks after surgery, it was discovered I developed sphenoid sinusitis. I wasn't certain about my symptoms because I thought everything I felt post-surgery was normal. I had a mild headache accompanied with pain and pressure behind my left eye. A couple of weeks prior to the discovery of the infection, I began to develop a foul odor in my nose. My sense of smell had diminished so I wasn't sure where the stench was coming from; the odor came and went. When I finally decided to go in and ask the ENT about it, he examined my sinuses with a flexiscope and was able to see that I had infection. It resolved with anitbiotics, but became a recurrent problem for the following year. A few months after the operation it was discovered that the titanium mesh had dislodged from its original placement in my head. It did not move significantly and posed no threat to my brain at the time. However, an MRI and CT scan in 2007 showed sinus disease had set in, and I returned to UCLA to undergo a second transsphenoidal surgery to remove the mesh and drain the sinus. I was on the operating table, seconds away from having the operation, when I was told I was pregnant with my fourth child. The surgery was canceled and sphenoid sinus infections continued to be a chronic problem. It was during this time that it was first mentioned in a post-operative MRI report that a second mass, located on the right side of the sella, was developing. It is an area that is being watched, but nothing - apart from surgery - can be done to confirm if it is tumor.

The pregnancy was healthy, and I had no complications. My baby was born in February 2008 and I returned to my endocrinologist the following September for an annual check-up. My MRI report stated that the residual tumor, which invaded the left cavernous sinus, now measured 8mm x 3mm. My endocrinologist and neurosurgeon disagreed with the radiologists findings on the MRI because my hormone levels were normal. My endocrinologist said in true acromegaly, GH/IGF-1 levels are consistently elevated if it is a tumor. Therefore, the opinion of both doctors was that my labwork ruled out any suspected tumor. I was not satisfied with this explanation given the fact that I had a normal IGF-1 level presurgery and the area in question previously measured 2mm. I had a copy of the MRI and to my untrained eye, it looked like the tumor had enlarged when compared to the 2006 post-op scan.

In January of 2009, I sought another opinion and transferred my care to an endocrinologist at M.D. Anderson Cancer Center. The new endocrinologist ultimately agreed with the MRI findings. He said the tumor I have is plurihormonal and partially-functioning, and the fact that I had normal and mildly abnormal growth hormone levels before surgery proved this to be true. He also explained that this is why residual is seen (and does at times grow) without detectable excess growth hormone or prolactin. I had another follow-up MRI at M.D. Anderson in August 2010, and the report stated the tumor was stable. Although exact measurements were not given, the radiologist said everything remained unchanged and the endocrinologist agreed. I was told that if the tumor grows more than 2mm in a given year or if it begins excreting excess hormones again, I will have to undergo radiation treatment. The doctor didn't think another follow-up was necessary for 18 months (February 2012).

In September 2010 my ENT ordered follow-up CT scan to observe the condition of my sphenoid sinus and the titanium mesh placement. The doctor deduced from the results that surgical intervention was needed for ongoing infections but said he is not experienced in removing titanium mesh from the sphenoid sinus. It was revealed in the report that the mesh is located slightly in the left cavernous sinus and near the carotid artery. Also, the doctor disagreed with the recent MRI report (from M.D. Anderson) and believed the tumor had grown 1-2mm from the previous year. As a result of these findings, my ENT felt that a second opinion from a local neurosurgeon was warranted. A Dallas neurosurgeon agreed the mesh placement is very close to my carotid artery, and did not recommend its removal due to a high risk of injury. The neurosurgeon also felt the tumor was stable. He referred me back to my neurosurgeon in California for his opinion on these matters.

In March 2011, I returned to my neurosurgeon, Dr. Kelly, to discuss all the previously mentioned concerns. Repeat labs, a MRI, and a CT scan were performed while I was in town. No excess hormones were detected in the labwork I had done. Still, the MRI report stated the tumor in the left cavernous sinus measures 11mm (1.1cm) x 6mm, which is indicative of enlargement from my previous scan (8mm x 3mm) seven months ago. Additionally, it was stated the suspicious mass on the right side of the sella measures 11mm x 7mm. Because of these findings, Dr. Kelly recommends I undergo surgery to remove the titanium mesh and existing tumor. He does not recommend radiosurgery because the radiation would likely damage my pituitary gland. I am plan to return for an operation to remove the mesh and tumor regrowth at Saint John's Brain Tumor Center.


**In July 2011, I had surgery to remove the residual tumor, the titanium mesh, and osteitic bone in the sphenoid sinus. My pre-operative MRI in July showed the left cavernous sinus tumor had enlarged again to 15mm (1.5cm) x 8mm. During the operation, it was confirmed the tumor has invaded both the left and right cavernous sinus. Unfortunately, due to the case's complexity and the adenoma's fibrous nature, only about 60% of the tumor was successfully resected. For the latest info regarding my treatment: Click here.

Thursday, March 24, 2011

Tulips Against Tumors in Bloom

Last fall I participated in the National Planting Day for Tulips Against Tumors by planting the tulips I purchased from the National Brain Tumor Society in my garden. They started coming up late January, and I have been anxiously anticipating their bloom ever since.




The tulip buds came up this past weekend - just as I was getting ready to fly to California for an appointment with my neurosurgeon at Saint John's Brain Tumor Center. Here's what they looked like on the first day of spring...


I was in Santa Monica when I received this text message (and photo) from my husband -

"Wish you were here."

The timing of his note was perfect. I had so much on my mind...and I missed him just the same since he wasn't able to travel with me to the appointment.

Here's what my tulips looked like when I returned home yesterday - they're so beautiful!