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.

A Reason For Everything

Having reached the five-year mark of my surgery, I thought I'd blog about a few experiences that have been pivotal moments during my healthcare. I'll admit that sometimes I was frustrated when things didn't go right, but in the end, it was proven that the change of plans worked out for the best.

Here's a short list:

• I received a phone call on the day I had an appointment with my TMJ doctor (before to the discovery of the tumor) informing me the doctor had a stroke. As a result, my appointment was canceled indefinitely. 
•  I thought to myself, what a nightmare...now I have to start all over with another doctor! Little did I know what a good thing this would be.
  
  Read blog: It's Just in Your Head


• When I saw a neurosurgeon in Dallas for the first time about the tumor, he didn't test for acromegaly because I didn't present with the symptoms clinically. However, my endocrinologist did blood work to rule it out as a matter of procedure. This became a point of agitation because I had the IGF-1 test done three times in a row due to delay or misplacement of the results. The readings eventually trickled in, and the various IGF-1 levels were high-normal, abnormal, and normal, respectively. I recall the endo telling me it was good that the normal results didn't come back immediately because he would not have tested me any further for acromegaly. This information became the key in determining whether or not the tumor still existed in my cavernous sinus three years later. The variations in the labwork helped define the tumor as partially functioning, which means it can grow without being detected in the blood work. The significance of this is these tumors can be aggressive and less predictable.
  
  Read blog: Endo Update



• Before my second surgery, a couple of unusual things happened before I found out I was pregnant on the operating table.
  
  Two nights before the operation I told my husband I wanted to make a quick stop by the store and get some comfortable pants to wear home from the hospital. There was a chance my surgery might include an abdominal fat graft if a cerebral spinal fluid leak developed during the operation. David waited for me in the car while I went in to shop quickly. I looked around the fitness section of the store and picked up a few items, including a pair of sports pants. When I got to the register, the cashier who rang my items up appeared confused when she glanced at my choice of fitness pants. I was about to pay when the lady says, "Maternity pants?"
  
  "I'm sorry - what?" I asked.
  
  She explained, "Did you mean to pick up maternity pants?"
  
  "Oh - no! No, no, no - I'm not pregnant." I said as I paused and reasoned quietly to myself, Well...? No one will know they're maternity...I should try them on - but they will be too big...and there's no way I'll ever need them again!
  
  "Never mind, I don't want them." I responded. The cashier offered to wait for me while I went to grab the right pair of pants, but I decided not to because I was in a hurry with my husband waiting in the car. When I returned, Dave asked if I had found what I needed. I told him, "No, I picked up maternity pants by accident..."
  
  The morning of the operation the vein on my hand blew when the anesthesiologist inserted the intravenous line. This situation allowed enough time for another doctor to take over. I believe if my vein had not blown, it would've been too late for a pregnancy test because I signed the consent forms allowing the surgeon to proceed without it. Had the other doctor not taken advantage of the delay and followed proper procedure, this blog might have included news about an unknown pregnancy thwarted as a result of surgery.
  
  On the way home from the hospital, my husband offered to take me back to the store to pick up the maternity pants I had left behind a couple of nights before.
  
  Read blog: Second Surgery Update - Unexpected Delay



• Ongoing sinus infections have been a nagging problem ever since the displacement of the titanium mesh implant. What has recently come to light is that the mesh is so close to my artery that injury to it is a possibile if an attempt is made to take it out. Although this news is alarming, it is another good reason my surgery was canceled in 2007.
  
  Read blog: Local Neurosurgeon Consult
  
  
  From left: Me and my kids having fun at Dollywood
  (Obviously, I am safe after surviving a roller coaster ride with such velocity post brain surgery)
  

I've seen numerous doctors, and their forbearance has much to do with my progress and peace of mind. I am grateful for them. This journey has helped me trust that God is ultimately in control even over what may seem like untimely events. I may not know why something happens, but I believe the Lord has a purpose for it in the end.

Joining the Fight - National Planting Day

As I mentioned on a previous post, I decided to join the fight against brain tumors by taking part in the National Planting Day for Tulips Against Tumors this year. Here's some photos taken today of my girls and me planting tulips in our garden.







We had our first freeze of the season last night and so the ground is cool, but not frozen. I think (hope!!) I did everything right...in Texas we have clay soil, but my flowerbeds are in good condition. I love gardening and have always wanted to plant tulips. This was a great opportunity to do so! Can't wait until spring...

For more information on future National Planting Days you can click here: Tulips Against Tumors

Local Neurosurgeon Consult

I met with a Dallas neurosurgeon today. He was very kind and spent a lot of time with my husband and me discussing the possibilities regarding the residual tumor, placement of the mesh, and sphenoid sinus infections.

Here's what we discussed:

Regarding the tumor: He agrees with the recent MRI report that the tumor is stable and has not grown since last year. Depending on how it's measured, it's possible one doctor might perceive the tumor has grown, but overall he thinks it is unchanged. However, even though the tumor is stable he recommends gamma knife radiation. The tumor is small and so the the amount of radiation needed is minimal. In the long run a little bit of radiation could spare the surrounding structures of damage (specifically the optic chiasm) and stop tumor growth before it gets too big (and requires a larger amount of radiation). There is no question as to whether or not tumor exists in the left cavernous sinus, now the concern is when to start radiation...he suspects the tumor will continue to grow in the years to come without it. He suggested I discuss this with Dr. Kelly and my endocrinologist at M.D. Anderson. However, both doctors are aware of the residual tumor and neither one recommended radiation at this time, so I will not revisit this right now.

Regarding the titanium mesh: The doctor showed me where the mesh is located in my head. This is not easily identified on my previous MRIs, but clearly detailed on my most recent CT scan. For the past few years I have been under the impression that the mesh was wedged in the sphenoid sinus and not in close proximity to my artery. The most recent report states that the mesh is located along the mid and posterior sphenoid sinus, but also slightly extended upward into the left cavernous sinus and near the left artery. The mesh is encapsulated with bone and so removing it would be quite a dangerous task. He thinks carotid artery injury is likely during an operation and so it is strongly recommended that it be left alone. He is going to consult with a vascular surgeon regarding the placement of the mesh and whether or not any additional tests could be done to enlighten him to as to what risk (if any) there is to leaving it in my head.

Regarding the sphenoid sinus: What can be done to treat ongoing infections? The neurosurgeon thinks that surgery to open the right side of the sphenoid would engender air circulation and enable drainage. He mentioned this could be done by my ENT without going near the mesh. He's not sure what the cause of chronic inflammation or infection is, but he thinks this is a possible treatment plan.

The situation is not dire and the doctor is going to get back with me in a week or two with more of his thoughts after he's had a chance to discuss the findings with the vascular surgeon...I'll update then.

Tulips Against Tumors

Saw this announcement on the National Brain Tumor Society's Facebook page and decided to join in since I love getting out in the garden and this will be for a good cause. I have ordered my tulips and will be planting them in our garden.

From the organization's website:

JOIN THE FIGHT AGAINST BRAIN TUMORS!
"Help build brain tumor awareness by taking part in the sixth annual Tulips Against Tumors Tribute. Purchase tulip bulbs and then plant them on a designated date in honor of all those who have struggled, or are currently struggling, with a brain tumor. Choose from an array of single bulbs, combinations, or colorful mixtures...

National Planting Day - November 6, 2010 at 1 PM EST

Each year in honor of all those affected by brain tumors, we come together as a community to plant our bulbs on a designated date and time. All across the country, members of the brain tumor community will plant their bulbs 'together'. It is a powerful feeling to know that many people are honoring their loved ones by planting tulips at the same time."

For more information on future National Planting Days you can click here: Tulips Against Tumors

Bracing for a Fresh Perspective

I had just met with my endocrinologist at M.D. Anderson for my annual follow-up and overjoyed because of the news I received that my tumor was stable. However, the excitement quickly turned to confusion when I left his office. As I walked to my car in the parking garage, I received a call on my cell phone from my ENT's office in Dallas. The nurse on the line expressed concern and said that my doctor reviewed the MRI films and noticed some "changes." She wasn't specific about what kind and wanted to know if I was still having headaches. "Yes," I replied, "Headaches are still a problem. I had a raging one the morning of my MRI." The car ride home was filled with questions regarding the newfound concerns. I wondered if the nurse's questions were related to my tumor. Did the ENT have a different opinion about my tumor? Or was it just the appearance of my sphenoid sinuses? She didn't say. I needed to get a CT Scan and follow up with my ENT to discuss the findings. I met with him this week to go over the results. First, he said he tried to contact my neurosurgeon in California over the phone about his concerns before my appointment, but he was unsuccessful in reaching him. Because of this, he consulted with a local radiologist regarding his concerns about was he saw on the x-rays. The meeting outcome between the two doctors resulted in me being referred to a new neurosurgeon for a fresh perspective and closer look at what he described as the "big picture..."

My ENT explained that when a doctor looks at only one or two scans at a time, it is easy to conclude all is well. Sinus disease can look like typical post-operative changes and the residual tumor is still relatively small, so in a quick glance it would appear unchanged in size. However, when my ENT laid out the numerous MRI and CT scans chronologically, it told a different story. When he consulted the radiologist about my case, they agreed there were ongoing changes in the sphenoid/sella region of my head and the left cavernous sinus. It is difficult to determine the cause of the sphenoid changes, but the ENT is almost certain it is not scar tissue, and he suspects (but cannot say for sure) the dislodged mesh is part of the problem. Ongoing disease or infection in this area warrants surgical intervention because its proximity to the brain is a risk for meningitis. 

On the other hand, having surgery is risky because the mesh is adjacent to the carotid artery. Bone has begun to encapsulate portions of the mesh, making it difficult to remove without injuring the artery. The doctor continued to describe my predicament as "dangerous and potentially catastrophic" and believes a nuclear medicine work-up might prove helpful to get a better look at the bone in the pituitary region of my head before moving forward with any treatment plan. He has left the decision up to the new neurosurgeon. Also, upon closer examination, my ENT and the radiologist differed in opinion from M.D. Anderson that my tumor is stable. They suspect the tumor may have enlarged this past year.

The MRI report stated there were no worrisome findings. However, if it is true that I have infection and my tumor has grown, I will most likely need surgery and radiation treatment. Updates will follow when I get a clearer understanding of the big picture.