Who Nose an Acromegalic?

Most doctors I've seen do not think I have the clinical appearance of an acromegalic. The neurosurgeon I met with after the discovery of my pituitary tumor believed the mass was either a prolactinoma or nonhormone-secreting macroadenoma. His description of an acromegalic's appearance was exaggerated and not wholly accurate. He had no idea a patient with this disease was sitting in front of him. The next doctor I saw, an endocrinologist, ordered blood work as a matter of procedure - not because he believed I had acromegaly. He was surprised when my lab results returned positive and said I was the second acromegalic he'd met in his entire career.

One of the many changes seen in a person with acromegaly is an enlargement of the nose. I thought this was evident in my case, and my endocrinologist at MD Anderson agreed. A couple of years ago he sent me a copy of a letter addressed to my neurosurgeon. In it, he mentions, "The patient did supply me with some pictures between 1994 and the time of her surgery, there is perhaps more prominence of her nose, which can be seen on serial images..."

As you can see from the photos above, the tip of my nose did change shape. It was such a subtle change over time that I did not take notice of this until I was diagnosed with acromegaly in 2005. Fortunately, that's all that is noticeably different. My IGF-1 hormone levels were barely elevated (as documented in my lab work), and because of this my appearance is mildly altered. Most patients with acromegaly have an enormous amount of growth hormone circulating in their system, and the effects are devastating if it is not controlled.

Here are some of the physical signs and symptoms of acromegaly:

Enlarged hands and feet
* Larger and broader facial features
Enlarged liver, heart, kidneys, spleen and other organs
Increased chest size (barrel chest)
Jaw protrusion
* Thickened, oily skin
* Excessive sweating
Skin Tags
Fatigue and muscle weakness
A deepened, husky voice
Severe snoring or sleep apnea
Impaired vision
* Headaches
Enlarged tongue
Back pain
Pain and limited mobility in joints
* Menstrual cycle irregularities in women

* Symptoms I noticed when diagnosed in 2005.

An important step in early intervention is not just looking for the disease outwardly, but having blood work done to rule it out. If doctors excuse the possibility of acromegaly based on the appearance of a patient - it can easily be missed and diagnosis is delayed. This is a common problem, especially among younger acromegalics. If acromegaly is not found early enough, a person's appearance will change and their health can be compromised as a result of excess hormone excretion. Many patients who manifest the clinical appearance of acromegaly talk about how they told their doctors for years the physical changes they experienced, but their complaints were either dismissed or ignored. I suspect this is probably due to a lack of exposure to patients living with this rare disease.

Radiation: The Good, the Bad, and the Unknown

October was dominated by travel and doctor visits to discuss follow-up plans regarding the residual tumor. Much of what was discussed is good news, tempered with bad news and overshadowed by an unknown prognosis.

I met with my ENT and neurosurgeon in California mid-October for my three-month post-op appointment. My CT scan and sinus scope revealed no infection. I watched on a nearby monitor as the ENT put a camera up my sinuses. I could see firsthand where he and Dr. Kelly performed the surgery (modern technology is so cool). I appreciated the doctor's willingness to include me in this procedure, and I am grateful for the opportunity to look into this area. I was amazed at how clean everything looked. He explained the sinuses' anatomy and pointed to all the areas that were affected as a result of the operation. There is still an area on the bottom sphenoid that is healing and that was a bit gnarly, but overall my doctor said the sinuses look very good. I was instructed to continue my antibiotic ointment for another month and the sinus rinses indefinitely.

I also had an MRI while in town, and the results were discussed with my neurosurgeon. Both tumors are stable, which is good news, but radiation treatment is still recommended to begin in 6-12 months because the tumor is expected to grow again. Dr. Kelly will consult with Saint John Health's oncologist to determine what he believes would be the best treatment plan. Unfortunately, there is nothing else to update about this visit because I am still waiting for more information.

My other follow-up appointments were with MD Anderson's oncologist and my endocrinologist, and both were very informative.  The words that resonated with me the most from my discussion with the oncologist were, "This is a tumor you don't want to mess around with..." meaning this is serious, and I should take the necessary steps to stop its regrowth before it invades critical structures. I've read various publications about radiation treatment and its effect on the pituitary gland. The appointment with the oncologist was insightful as to why I might consider one type of radiation over another. The options for treating my residual tumor are proton beam therapy, stereotactic radiosurgery, stereotactic radiotherapy or somatostatin analog.

Here's what I discussed with both doctors:

Somatostatin Analog: This is not an option available to me because my tumor is a partially functioning tumor. My growth hormone levels are normal and so there is no excess hormone to control. Tumor growth is the only current concern. The cells in my tumor are different than a typical acromegalic tumor and it would most likely not respond to medicine.

Stereotactic Radiation Therapy: This is six weeks of daily radiation and a common treatment plan for pituitary tumors when the tumor is near the optic nerve. My tumor is a safe distance away from the nerve, so it is not the best treatment option. However, should the tumor grow in the next six months, I'll need to consider this.

Gamma Knife Radiation: This is the type of radiation that MD Anderson is recommending. It uses a higher dosage of radiation than the other options, which is why it would not be used if the tumor were close to my optic nerve. The procedure takes one day and involves three doctors: an oncologist, a neurosurgeon, and a physicist.

Here's a video that explains what to expect with Gamma Knife radiation:



Unfortunately, my pituitary is in the target field of radiation because the residual tumor is on either side of the gland. This means I will most certainly lose function as a result of treatment. Even though there are risks with the gamma knife (stroke, secondary tumors, and damage to critical structures in the vicinity), the doctors feel this is the safest and most effective way to stop the growth of my tumor. Hormone replacement will be needed.

Proton Beam Therapy: Another option that is available but not recommended by the oncologist. This is also a six-week treatment plan, and it's not as effective as the Gamma Knife. There's no benefit in choosing this over stereotactic radiotherapy because the result is likely the same.

I am undecided about where I will ultimately have radiation and what plan I will use. If I have my treatment in Houston, I will have to consult with a neurosurgeon, and I don't have one at MD Anderson. I prefer to stay with my current neurosurgeon since he is most familiar with my case. I am upset about the prospect of losing my pituitary function and the complications that could come about as a result of radiation. It is a difficult decision - a catch-22 in so many ways. If I don't have radiation, the tumors will continue to grow. Pituitary adenomas are typically slow growing and not aggressive, but mine has already expanded into the cavernous sinuses and is abutting both arteries. Adjacent to each tumor is the right and left temporal lobes. Also, the doctor discovered I had dural invasion during my most recent surgery.  The left-sided tumor is a safe distance from the optic nerve at the moment, but if left alone, it could grow against it and cause blindness. The behavior of the tumor is unpredictable.

I am struggling with accepting the need for radiation and have difficulty convincing myself this treatment is needed. I have no health problems. If the tumor stabilized, I could live with it, but apparently, the risk of regrowth is too significant. I will be revisiting this and possibly begin treatment in the spring.

Endocrine Follow-Up Three Weeks After Surgery

I met with my endocrinologist at M.D. Anderson this week, and I am still waiting for a couple more lab results to come in, but it appears my pituitary gland has survived the second surgery. This is great news! The doctor and I discussed many things, including the tumor pathology results and future treatment options.

As I mentioned in previous postings, I have a partially functioning tumor. A partially functioning tumor randomly excretes excess hormone (GH and prolactin). This makes it unpredictable in terms of growth and undetectable in blood work because hormone levels can be normal even though tumor is growing. This is precisely what has been happening in the past year. In August 2010, the tumor in the left cavernous sinus measured 8mm x 3mm. In March 2011, it measured 11mm (1.1cm) x 6mm, and my pre-operative MRI in July showed the tumor was 15mm (1.5cm) x 8mm. It was confirmed during surgery that the suspicious area in the right cavernous sinus is a tumor that invaded the dura mater. Even with tumor enlargement and regrowth, my hormone levels consistently remained in normal ranges with only slight increases over time. The tumors were extremely fibrous and not easily removed. What remains in the cavernous sinus (about 40% residual) is inoperable and will likely need radiation. It is unknown if medication can be used to stop the growth because it is not a typical functioning tumor. My endocrinologist is taking my case to a pituitary conference next week to discuss the management of my tumor growth with his colleagues. Among the options being considered is proton beam therapy, stereotactic radiosurgery, stereotactic radiotherapy, or somatostatin analog.

My pathology results returned positive for growth hormone and prolactin but also gave a percentage of something I didn't know about - P53 and Ki-67. It sounds as if I'm introducing a set of robotic twins. These are tumor markers used to define the behavior of a pituitary adenoma. I'd never heard of these tests before last month, or maybe I stumbled upon them in a medical article but didn't take note of it at the time. So what's the signifigance of P53 and Ki-67? The endocrinologist says my results (P53 = 1% and Ki-67 = 5%) indicate the tumor could become an atypical pituitary adenoma. According to the World Health Organization Classification of Endocrine Tumors, a positive P53 with Ki-67 over 3% suggests an aggressive invasive pituitary adenoma and they recommend careful monitoring for regrowth with MRIs. I asked the doctor if these numbers meant I would wind up with pituitary cancer, and he answered that it's not impossible but highly improbable. The diagnosis of pituitary carcinoma is rare and not typically diagnosed unless the tumor appears up in another region of the brain or body (again - unlikely in my case). This is good to know!

I also met with an Infectious Disease doctor while at M.D. Anderson. I'm still on oral medications for the bacterial and fungal infection festering in the sphenoid bone. The doctor feels it's safe to stay on oral meds because all of the mesh was removed, and most, if not all, of the osteitic bone was drilled out. So, I have been spared having to go on I.V. antibiotics. The final pathology report showed several different bacteria that grew on the cultures. Results of the fungus are still pending, but initial impressions under the microscope suggest it belongs to the Aspergillus species.

I'm so glad I went through the surgery - no doubt, it was absolutely needed. I would've been in a far worse situation had I not gone through the operation. This was the best course of treatment. My energy level is not quite back to normal yet, but I am feeling much better. I'm satisfied with the surgical outcome and am grateful for the doctors involved in my case. It was not easy to go back to California and have another surgery, especially after being told by three doctors in Dallas that my life may end in the operating room. It was a risky operation but successful in the right surgeon's hands.

Two words come to mind that describes my attitude right now: vigilant and trusting. If I could impart anything to my readers about this experience, I would say: don't let treatment decisions be driven by fear. Understand your illness and all treatment options; employ the best doctors to help; take time to plan carefully for optimal outcomes, and trust that your choices are the right ones. All of this makes a difference long-term. 

Two Weeks Post-Op

Photo: My step-sister & I - morning after surgery.

I met with my neurosurgeon last Friday and received clearance to go home. My family and I returned to Texas late Sunday evening after driving two days from Southern California. We managed to dodge a potential accident caused by a blown tire that flew off the back of a truck going 80 mph right in front of us. Other than this, the trip back home was fairly uneventful. I have a lot to write about, but much of it will have to wait until I can organize my thoughts. My experience at Saint John's was wonderful and I'm so grateful for the doctors and nurses that cared for me there. Much of the infected bone was taken out and the surgeons were able to remove the entire body of mesh. I am alive to tell you that - this alone is amazing! I'm glad I went in for the surgery, but still have a long road ahead of me.

Here are some excerpts from my CaringBridge.org site which I put together for family and friends during my stay at the hospital. This will bring you up to date on my progress. At the moment I am still waiting to hear from M.D. Anderson Cancer Center for a post-op endocrine and ID appointment.

Wednesday, July 20, 2011 8:44 PM, CDT

Post Surgery Update
Thank you to everyone for their prayers and phone calls. I was hoping to post something myself last night but time got away from me. Alecia was in surgery for 4.5 hours and I was able to visit her in the recovery room at 8:00 PM PST. The results are mixed. A lot of porous bone was removed from the sinus and the mesh was completely removed. She's been dealing with stabbing pain behind the left eye for about 6 years and, thank the Lord, that is gone now. She has a slight fever and is on antibiotics. There was no cerebral spinal fluid leak this time and Alecia says she’s feeling better after this surgery than she did her previous surgery. They may release her from the hospital tomorrow. Tumor is on both carotid arteries and some was removed but much of it is too fibrous. I was able to avoid telling her she would need radiation last night but her questioning was more direct today and I had to let her know radiation was being recommended to treat the remaining tumor.

- David


Friday, July 22, 2011 9:37 AM, CDT
written by Alecia E.

Released from Hospital
I was released from the hospital yesterday afternoon and am home resting at my parents house now. The level of pain I'm experiencing is minimal and better than I expected. For the most part, I am very tired and feel like I am battling a bad head cold. Last night was probably the most uncomfortable night so far as my headache intensified after dreaming about hiking in the Grand Canyon all night. Not good to dream about hiking in the Grand Canyon after brain surgery - ha! I go back to Saint John's Health for labs tomorrow morning for a quick sodium recheck. I developed hyponatremia shortly after the surgery, but it was under control yesterday. Just staying on the safe side. Still waiting for pathology reports to come in, but the doctor was pretty certain the tumor had not become cancerous. Also, still waiting to see if anything grows out on the infected bone that was taken out.


Sunday, July 24, 2011 1:20 PM, CDT
written by Alecia E.

Bone Infection Results
I was called back to Santa Monica this past Friday for a post-op appointment with one of the surgeons. Some of the pathology reports are trickling in, and although not completely grown out yet, it appears I have three types of abnormal bacteria growing and a fungal infection in the bone under my brain. Final results are still pending, but it is confirmed that I will need to be on a PICC line for 6 weeks with I.V. antibiotics and steroids when I get back to Texas. The doctors were able to drill out a vast majority of the infection and the I.V. treatment should help with recurrence of osteitis. My neurosurgeon is sending me to a infectious disease doctor this week before I leave town. Radiation treatments cannot begin until the infection has cleared up.


Friday, July 29, 2011 6:38 PM, CDT
written by Alecia E.

Going Home
I had my visit with the ID doctor on Wednesday. I may not have to be on I.V. meds afterall because most of the infection was removed during the surgery. She placed me on oral antibiotics until the final culture results come in. This will be discussed further with my doctors in Dallas and Houston. Also, I met with my neurosurgeon today. I have residual tumor on the left/right carotid artery and cavernous sinus. At this time it is believed the tumors are benign, but they are agressive in nature. My doctor said to see him in 3 months for a follow-up MRI and we will discuss radiation treatment at that time. I have developed a cough, but overall I am feeling very good. I was given clearance to go home tomorrow. There are many appointments to be made once I get back in town. Thank you everyone for your support!

Night Before Surgery

I just received a phone call from the nurse, and I'm all set for surgery tomorrow afternoon. I met with my surgeons last week. They expressed a high level of confidence regarding the outcome of my surgery, but unfortunately, the recovery may not be as easy this time. In addition to having tumor recur, I've been diagnosed with sphenoid osteitis. I've had continual bone growth under my brain that is walling off a pocket of infection in the bone (that has been present since my surgery in 2005). I will be on an I.V. antibiotic post-operatively for six weeks to stop the osteitis from reoccurring. Also, my neurosurgeon does not think he can remove all of the tumor, but he will remove most of it. There is an area of tumor growth behind the left carotid artery and next to my temporal lobe, which is not accessible. All my pre-op labs look good, and my hormone levels are within normal limits. However, these are some of the highest numbers I've had post-operatively since 2005. Here are the pre-surgery hormone levels: IGF-1 255,  GH 4.9, and Prolactin 10.5. My previous labs can be viewed here:  My IGF-1 Levels I'm uneasy because these results could indicate the tumor is functioning again. If I weren't scheduled for surgery right now, I would be scheduling an appointment with my endocrinologist to discuss the increase in my levels. I think I made the right decision in moving forward with the operation. I hope for a successful outcome and effective medicine to knock out the bone infection post-operatively.

Brain Surgery - Here I Go Again

I've spent the past few months preparing for surgery. Well, I haven't done anything elaborate other than making hotel reservations, fill my calendar with appointments, and turning the pages, wondering if I'm living my last days. Daily I wonder, "What would I do if I only had (fill in the blank) days left to live?" and conclude I wouldn't do anything drastically different. I'm keeping life simple and embracing each day - whatever it brings.

I recently changed my daily routine and started running with my children in the morning. It's been a good way to get rid of stress. We've talked about doing a 5K together, but it's just talking now. I've been entertaining this idea for quite some time. We'll see what happens after my surgery. In any event, it's something for me to look forward to. My surgery is planned for mid-July. I'm nervous but believe I am in good hands and continue to hope for the best.

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.

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!

Doctor Consult - Update

I recently had an appointment with a local neurosurgeon who consulted with a doctor that specializes in the management of problems involving the cerebral vasculature. They discussed the safety of leaving the mesh in my head as the local neurosurgeon believes that "there is potential for the titanium to involve the wall of the vessel [carotid artery]." His concern is the close proximity of the mesh to the pulsation of the artery. He asked the vascular neurosurgeon if there was any benefit of obtaining an arteriogram to determine the safety of the situation and he doesn't think there is. Both doctors agree that removing the titanium mesh would be difficult and that an attempt to do so would carry a risk of injuring the left carotid artery...they don't recommend it. He referred me back to Dr. Kelly for his opinion on this.

I followed-up with my local ENT in December to discuss the recent consults and there are a couple things on the table to consider right now. It has been made clear to me by all of my doctors in Dallas that they will not remove the mesh from the sinus because they lack the experience and feel it is too dangerous. It is not clear as to whether or not the mesh is the source of infections in the sphenoid so concerning this I have three options:

1. Continue taking medications when the symptoms arise and just keep watching the area via CT scan.

2. My ENT has suggested he go in and open the sphenoid, culture, and photograph the area to confirm (or rule out) any problems. This will aerate the sinus and allow him to have a visual as to where exactly the mesh is sitting inside the sphenoid without touching it and determine what (if any) bacteria is causing the problem.

3. Return to my neurosurgeon in California and have the mesh partially removed. I have spoken to Dr. Kelly and he is confident it can be removed safely as he has done this to several other patients in the past. He wants me to consult with his ENT, which I have agreed to do. One problem though...neither doctor takes my insurance. My neurosurgeon moved to Saint John's Heath Center and dropped off my plan about a month after my surgery at UCLA was canceled (in 2007). I am currently petitioning my insurance carrier to approve treatment since my doctor was, at one time, contracted with them. I'm not sure how this will fly, but it doesn't hurt to ask.

I have been mulling over the decision of whether or not I should go back to Dr. Kelly for surgery this year. Depending on what my insurance comes back with will determine how aggressively I plan (if I can plan at all...) a trip to California. Until something can be worked out my ENT said he will help treat the infections. If my insurance denies my request for coverage then I may have sinus surgery locally and just go from there.