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.

Remission Five Years and Counting

I had my annual check-up earlier this month at M.D. Anderson Cancer Center. Five years ago today I was in the operating room at UCLA Medical Center having my tumor removed. Right now my health is excellent. The residual tumor on my carotid artery is still stable and not actively excreting any excess hormones. Also, my pituitary is functioning as it should. I am relieved by the good news!

While I was in Houston I met a fellow acromegalic for the first time. Marisol is a member of the Acromegaly Community and she had surgery in September 2009 to remove her tumor which was followed by radiation. She contacted me through my blog last year and we have kept in touch ever since. It was so neat to meet her in person and I really enjoyed our visit. The most wonderful news is that she is pregnant again and her baby is due in December!

The only thing pending at the moment is I am scheduled for a repeat CT scan in September to observe the condition of my sphenoid sinus which has given me trouble off and on these past few years. However, I can hardly complain because it's a drop in the bucket compared to the health problems I could have incurred from this whole ordeal. Everything looks so good that I have been told by my endocrinologist that I do not have to return for an MRI or labwork for 18 months. I am still waitng to hear from my neurosurgeon, but I suspect he will agree will the findings.

It's (not so) Complicated

When I tell someone that I've had a brain tumor removed they automatically think I've had a craniotomy. I know this because their eyes usually begin to skim the top of my head as if they're wondering where the entry point was when the tumor was removed. I mention the tumor was taken out my nose and they're surprised that can even be done. Somehow, it never seems like I've said enough about my experience, but any detailed discussion about it would be lengthy and probably more information than they want to know...so I hold back. I usually clarify the tumor was benign and removed from my pituitary, but that's it. When I told my brother about my tumor and how it would be removed he asked, "Oh, so...is it kinda like that scene in the movie Total Recall when Arnold Schwarzenegger pulls something out of his nose?" Well...almost, but not quite.

I received the news about my pituitary tumor in the spring of 2005. The phone conversation with my doctor was brief. I listened intently as he explained my MRI results and when I heard the words "referral to a neurosugeon" I realized I was in a serious situation. It was as if I had received a death sentence even though the doctor assured me I would be fine. Shortly after this I met with a local neurosurgeon who attempted to educate me in 20 minutes on the structure of my brain and what a tumor on my pituitary meant. The appointment eased my fears, but I still had so many questions. Unfortunately, many of these questions would have to wait until it was revealed what kind of tumor I had and whether or not my pituitary was functioning properly.

For days after my visit, I scoured the Net and searched for every piece of information I could get my hands on. At the time, personal stories were scarce but I read about the brain anatomy, pituitary function, different kinds of tumors, lab work, surgeries, hormone replacement, what to look for in an experienced surgeon, and the list goes on. Even with all the information I was getting, it seemed so complicated...I had information overload. It was difficult to sift through and absorb everything I was reading, especially since I knew little about the pituitary function to begin with. I realize that this is the case with many people. I've tried to explain my situation to those that ask about the tumor. Most of the them are not aware of the entire brain anatomy and that there are different kinds of pituitary tumors that affect it. I think it's in the "need to know when it happens to me or someone I love" categories of life, or at least it was for me before my diagnosis.

The pituitary is the master endocrine gland and it affects (either directly or indirectly) all the major organs in your body. Having a tumor wrapped around it is a big deal. There are many support groups being formed online to help people who are struggling. One group in particular that is gaining attention is http://www.acromegalycommunity.com/. If you have recently been diagnosed with acromegaly I would encourage you to sign up. There are many people sharing their stories on the message boards, and they may be able to help you with any struggles you may have in understanding complications that come about with having a tumor on your pituitary.

Sinus Update - Three Years Later

As many of you have read already, immediately after my surgery I developed sphenoid sinusitis. This went on for a several months after my surgery and it was discovered that the titanium mesh put in my head dislodged from its original placement. It was suspected that this was attributing to my problem. In 2007 it was decided that I would undergo a second surgery and have the mesh removed. However, I found out I was pregnant while I was on the operating table and the surgery was canceled.

Early last summer I began having headache, ear pain, and pressure behind the eyes. I was treated by my general doctor for sinusitis and returned to my ENT in January to discuss symptoms that resurfaced again. After treating me with another round of antibiotics for sinus infection, he ordered a CT scan (because symptoms did not go entirely away) which revealed mucosal thickening >8mm in the sphenoid sinus. My ENT thinks my symptoms and the scan results may suggest sphenoid sinusitis though the CT scan is not overwhelmingly convincing. What is seen could be infection, but it is hard to make out if the post operative changes are scarring or inflammation. There is a slight change in the right sphenoid from prior studies that is suspicious and so in this situation the doctor said it is prudent to prescribe an extended course of antibiotics and see if the symptoms go away (as they have in the past). I will be rescanned in a few months to see if there is any change in my sinus. If there is evidence of more thickening, then removing the mesh might be the right course of action to take.

For now, I have put off pursuing surgery. Someone might ask, "Why wait? You were going to have the surgery before...why not just go get it over with?" Well, here's my reasons: 1) According to my ENT there is not preponderant evidence that the surgery is needed. Menningitis is a risk with sphenoid sinustis, but the doctor does not see an imminent risk on my CT scan and this is not likely to happen if I'm on medication. 2) It's a risky surgery. My ENT said it would be like having pituitary surgery all over again. Staying close to home would be most convenient, but not possible. If I stayed in Dallas the operation would involve a team of doctors who are not experienced in removing titanium mesh from the sphenoid/sella. I would be better off returning to my neurosurgeon in California. 3) A family of six traveling from Texas to California is costly and not easy. 3) Lack of time (I know - I could make time...) 4) Honestly, I'm scared to go back in surgery.

For more information on the history of my pituitary tumor: Click here.