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.
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
No visual disturbances
Excessive sweating
Amenorrhrea
Chronic ear pain
Pimples (more than usual)
Facial puffiness & swelling
Galactorrhea
Thickened skin on feet
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 202GH – 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.
