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.
Tuesday, April 20, 2010
Sunday, July 12, 2009
It's Just in Your Head
Here's a recap from a previous post on what some of my symptoms were before my brain (pituitary) tumor was discovered and the difficulty I had getting a doctor to look for root cause of my problem(s):
What I didn't expound upon in this earlier blog post is what transpired with the second ENT, Dr. B, before getting a third opinion. After being told by Dr. B that there was "no justification" for an x-ray or MRI, he told me not to go to another doctor because he would only tell me what I wanted to hear. Dr. B knew I had gone to several doctors before him, and I had been diagnosed with all sorts of things, including an arthritic jaw, ear travelers syndrome, otitis media, and TMJ. It was becoming obvious I was annoying the doctor with my ongoing concerns and acting a little crazy because I had seen so many doctors. He mentioned his TMJ patients were his most difficult because they never think their problem is what he tells them. He insisted I go back to the TMJ doctor and have him take another look before anything else would be done. What was frustrating was I went to the TMJ doctor on the top of the list Dr. B gave me because his opinion was held in high regard. When the TMJ doctor said I didn't have TMJ, Dr. B insisted I return for the diagnosis. There was no other possible explanation for my symptoms.
The doctor called me less than 24 hours after the MRI was done and told me about the brain tumor. After our discussion, I instant messaged my husband at work with the news. He was joking with me at first because he had been teasing me that it was all in my head. How could so many doctors not know the cause of my problem? Our conversation went something like this:
Me: Just got off the phone with the doctor about my MRI
Dave: Oh, what did he say? You have a brain tumor? LOL
Me: Yes...
Dave: LOL
Me (crying while typing): I have a brain tumor.
Dave: No, seriously - what did he say?
Me: I'm not kidding...he says I have a brain tumor.
Dave: ??
At this point Dave picked up the phone and called me. His boss was very understanding and sent him home to be with me the rest of the day.
Dr. B's remark about my numerous doctor visits, "...they'll just tell you what you want to hear," was not valid. I wasn't given definitive reasons for the persistent headaches and ear pain - just theories. For example, I was told by the first ENT that "chewing gum causes headaches." He diagnosed me with an arthritic jaw and then handed me a powerful prescription (I never filled) for pain medicine (later taken off the shelf by the FDA) to cope. If it worked, we knew that was the problem. Explanations like this made me pause and think about getting different opinions. I'm sure there are hypochondriacs doctors encounter, but my common symptoms were related to an uncommon disease. I happened to be that freak rare statistic patient that no one expected. Seriously, I would've preferred a better explanation for my symptoms, but everything made sense the day I learned about the tumor. I felt vindicated because it was revealed I wasn't crazy after all.
"...I began having severe headaches shortly after we moved from California to Texas in 1999. I had no history of headaches, so a CT scan was ordered by my general physician. It came back 'normal.' At this point, my doctor assumed, and so did we, that the headaches were allergy related because this all started after our move (the area is awful for allergies). I never vigorously pursued another answer for the headaches after that, although I mentioned it whenever I went to the doctor. I frequently took naproxen sodium whenever I had a headache, which helped me relax and drift off to sleep.
In addition to my other symptoms, I developed chronic (left) ear pain. For almost two years, I visited several doctors, including two ENTs and a TMJ physician, to find the cause. The TMJ physician said I didn't have TMJ (took x-rays, etc. to rule it out), but the ENT (who referred me to the TMJ doc) insisted I had the problem. I asked if he could order an x-ray or something to look deeper in my ear, but he felt there was no justification because I had a "classic case" of TMJ. He didn't think it was necessary to look any further until I went back to the TMJ doctor for more testing. Finally, I decided to get yet another opinion from a third ENT..."
What I didn't expound upon in this earlier blog post is what transpired with the second ENT, Dr. B, before getting a third opinion. After being told by Dr. B that there was "no justification" for an x-ray or MRI, he told me not to go to another doctor because he would only tell me what I wanted to hear. Dr. B knew I had gone to several doctors before him, and I had been diagnosed with all sorts of things, including an arthritic jaw, ear travelers syndrome, otitis media, and TMJ. It was becoming obvious I was annoying the doctor with my ongoing concerns and acting a little crazy because I had seen so many doctors. He mentioned his TMJ patients were his most difficult because they never think their problem is what he tells them. He insisted I go back to the TMJ doctor and have him take another look before anything else would be done. What was frustrating was I went to the TMJ doctor on the top of the list Dr. B gave me because his opinion was held in high regard. When the TMJ doctor said I didn't have TMJ, Dr. B insisted I return for the diagnosis. There was no other possible explanation for my symptoms.
I was discouraged and embarrassed by the ENT's remarks so I waited about seven months before I dared to make another appointment with the doctor. The headaches and ear pain persisted, so I made the return appointment with the TMJ doctor. Fortunate for me, the day I had my appointment, the doctor had a stroke. I was walking out the door to the doctor's office when the phone rang, and his receptionist told me my appointment was canceled until further notice. At this point, if I were to return to Dr. B, it would mean I had to seek another TMJ's opinion before returning. Reluctantly, I decided to get a third ENT opinion instead. He differed in thought about the TMJ diagnosis because the specialist had ruled it out. He didn't see my need to go back for a second work-up. His conclusion was we had to think worst a case scenario - that I might have a tumor causing the symptoms. He ordered the MRI that revealed a 2.5cm tumor under my brain, wrapped around my pituitary and growing into the left cavernous sinus.
The doctor called me less than 24 hours after the MRI was done and told me about the brain tumor. After our discussion, I instant messaged my husband at work with the news. He was joking with me at first because he had been teasing me that it was all in my head. How could so many doctors not know the cause of my problem? Our conversation went something like this:
Me: Just got off the phone with the doctor about my MRI
Dave: Oh, what did he say? You have a brain tumor? LOL
Me: Yes...
Dave: LOL
Me (crying while typing): I have a brain tumor.
Dave: No, seriously - what did he say?
Me: I'm not kidding...he says I have a brain tumor.
Dave: ??
At this point Dave picked up the phone and called me. His boss was very understanding and sent him home to be with me the rest of the day.
Dr. B's remark about my numerous doctor visits, "...they'll just tell you what you want to hear," was not valid. I wasn't given definitive reasons for the persistent headaches and ear pain - just theories. For example, I was told by the first ENT that "chewing gum causes headaches." He diagnosed me with an arthritic jaw and then handed me a powerful prescription (I never filled) for pain medicine (later taken off the shelf by the FDA) to cope. If it worked, we knew that was the problem. Explanations like this made me pause and think about getting different opinions. I'm sure there are hypochondriacs doctors encounter, but my common symptoms were related to an uncommon disease. I happened to be that freak rare statistic patient that no one expected. Seriously, I would've preferred a better explanation for my symptoms, but everything made sense the day I learned about the tumor. I felt vindicated because it was revealed I wasn't crazy after all.
Monday, February 16, 2009
Endo Update
The drive was easy, the weather was pleasant, and I visited with some friendly folks while I was at M.D. Anderson Cancer Center. It is a nice hospital, and the staff is helpful and accommodating. It was, however, rather somber because it was evident that people were fighting for their lives everywhere I looked. Other patients I met traveled from out of state to see a doctor about their problems. I didn't feel like I belonged there and kept thinking I was not that sick. Even still, I had a good experience, and I am glad I moved my follow-up care there.
First, here's some pictures from my trip to Houston:
It was icing over in Dallas when I left...
but it looked like spring in South Texas!
Here were some of my questions for the endocrinologist and the answers I received:
Q. Is there any sign of pituitary failure or hypothyroidism? No, my thyroid is functioning well - all the labs came back normal.
Q. I was not able to nurse my daughter beyond 7 months postpartum because my milk production was so low. Why did this happen? He really didn't know - there is no evidence that suggests an existing pituitary condition caused this. Sometimes it just happens.
One of the reasons I went to M.D. Anderson looking for a new doctor is because my endocrinologist in Dallas said that a normal IGF-1 means there is no tumor. Therefore a patient doesn't need to have the Growth Hormone Stimulation Test. He believes a normal IGF-1 is sufficient to determine whether a patient is in remission from acromegaly. While I understood what he was saying it was a red flag to me because I had a normal IGF-1 with an abnormal GH test before surgery. My new endo says I have residual tumor, and he spent a lot of time explaining what he thought was going on. When I saw him last month, I didn't have my past MRI scans or records. I mailed them after my appointment and have been waiting for his response to my other questions:
Q. During my appointment it was mentioned that you think I have residual tumor. Now that you have reviewed my medical history and MRI scans do you still have this opinion? The doctor suspects there is residual tumor in the left cavernous sinus and that it is non-functioning or making GH to such a small degree that it's clinically irrelevant.
Q. Is a nonfunctioning/functioning tumor "better" than a full blown GH or prolactin tumor? Is it less agressive because it is only partly functioning? Nonfunctioning tumors can be aggressive in terms of growth (hard to predict) but my tumor is not clearly overproducing GH to warrant medical therapy. The plan will be to carefully monitor the residual tumor's growth, and if that happens, we can consider radiation.
The doctor believes there is evidence of residual on the MRI scan even though it is not seen in the blood work. I am over the shock of hearing that I have tumor, so I was not upset when he told me this. He says my tumor is partially functioning, which means it was not consistently producing excess GH or prolactin presurgery. He believes there is evidence of this in the tumor pathology and that I had a normal IGF-1 lab before the macroadenoma was removed. He thinks the residual left is not functioning right now, which is why my blood work is normal. The tumor could start functioning again, but right now it isn't. It's unusual for a person to have a partially functioning tumor. Most people have one or the other. What he said makes sense, and it explains why my IGF-1 levels were mild (barely elevated). He mentioned residual tumors could cause insulin resistance, but there's no evidence in the blood work to support this. Diet is the only way to control the episodes - eat small meals throughout the day and watch my carbs intake.
Since the remaining tumor in the left cavernous sinus is inoperable, the only options are to treat it with medicine or proceed with radiation. There is no excess GH or prolactin hormone to suppress, and radiation treatment could damage my pituitary gland so the doctor recommends we watch it. There is no need to do anything right now. As crazy as it seems that I can safely live with tumor on my carotid artery, he assured me it is okay. It's growing slowly, and he does not think it will erode the artery or invade my brain. At this time, it looks like I'll be going to Houston for any future check-ups. I'll return to M.D. Anderson in 6 months for a repeat MRI and bloodwork.
Tuesday, October 14, 2008
Peace of Mind Granted
My recent hormone levels indicate the acromegaly is still in remission and I can relax. I don't have the details right now but I've been assured by neurosurgeon that everything is good and my GH suppressed. I'll post the hormone numbers later. My IGF-1 level is still pending but I am not worried about that since the growth hormone suppressed below 1.0.
Dr. Kelly really went out of his way to help me and for this I am so grateful. The endocrinologist explained his stance on why he refused to repeat blood work. He feels that when IGF-1 and prolactin levels are normal this is sufficiently indicative of remission; therefore, the glucose suppression test is not needed. He said he thought I was the only one that asked to have the suppression test done and did not realize the suggestion came from the neurosurgeon. He felt the MRI report was "vague" in description of the mass(es) and it did not warrant further investigation. He made it clear that he disagrees with having the suppression test regularly as definitive testing even when there is questionable residual on the scan.
As you can imagine I am VERY relieved that the blood work is normal, especially when I consider my options concerning growth of any residual tumor next to my carotid artery. The location deems it inoperable. Dr. Kelly mentioned this shortly after my surgery when the macroadenoma was removed three years ago:
- August 31, 2005
Dr. Kelly really went out of his way to help me and for this I am so grateful. The endocrinologist explained his stance on why he refused to repeat blood work. He feels that when IGF-1 and prolactin levels are normal this is sufficiently indicative of remission; therefore, the glucose suppression test is not needed. He said he thought I was the only one that asked to have the suppression test done and did not realize the suggestion came from the neurosurgeon. He felt the MRI report was "vague" in description of the mass(es) and it did not warrant further investigation. He made it clear that he disagrees with having the suppression test regularly as definitive testing even when there is questionable residual on the scan.
As you can imagine I am VERY relieved that the blood work is normal, especially when I consider my options concerning growth of any residual tumor next to my carotid artery. The location deems it inoperable. Dr. Kelly mentioned this shortly after my surgery when the macroadenoma was removed three years ago:
- August 31, 2005
Given my endocrinologist's reluctance to put my mind at ease by ordering simple blood tests, I am considering moving any future appointments to a different doctor. I prefer to go to an endocrinologist that has an active interest in researching acromegaly, and so I am looking into MD Anderson Cancer Center in Houston as a possibility. Although it is evident I am still in remission, I shouldn't feel that I am annoying my doctor when I voice concerns about symptoms I am having or fear returning tumor. This is especially true when it is explicitly stated on MRI results that there is an area that is suspicious for residual tumor and it is slightly larger. There is no pathological evidence to support recurrence of tumor, but this area previously measured 2mm after surgery and it is now aprox 8mm. The neurosurgeon recommends that blood work be assessed every 6 months to be sure I remain in remission - this is just standard protocol.“...should this [2mm] area in the cavernous sinus prove to be residual tumor, it would be an ideal target for radiosurgery and would likely not be amenable to further surgical removal given its location within the cavernous sinus.”
Monday, September 15, 2008
Then & Now
Click to Enlarge**Note: the red arrow is pointing to the macroadenoma I had removed. The other arrow is pointing to tumor that had grown into the cavernous sinus on the carotid artery. This is the suspected residual. My labs have been in the normal range, and so the area in question has been considered to be scar tissue.
Thursday, September 04, 2008
Prolactin Level While Nursing
Visit Source: kellymom.com Breastfeeding & Parenting
(Normal value ranges may vary slightly among different laboratories)
I got a call from my endo this morning. My prolactin level is 4.9. I guess this explains the lactation problem. My (pre-pregnancy) prolactin was 5.2 last year. I am amazed that I am producing any milk right now. I am so glad I had this checked out. At least now I know what my daughter's low weight is caused by; there is no doubt that she is not getting enough breastmilk. The doctor said this is "almost surely" due to my pituitary condition, and there is nothing I can do to increase my prolactin level. It is interesting to note that I did not have a pituitary condition (that I knew of) before I had Danielle. I asked if I needed to come in and discuss this further with him, but his nurse said he had no appointment available until November.I feel like it's futile to try and continue nursing Danielle. I will feed her what little I can, but since she is weaning naturally, I expect I will mostly likely stop altogether soon. The bottle is certainly doing a better job than I can right now. I plan on going in for my annual MRI some time this month.
Tuesday, August 26, 2008
Feeding Baby Post Surgery
A couple weeks ago I started getting concerned about my daughter's weight. She seemed awfully small compared to what my other three children weighed at her age because she's not as chubby as I remember my other kids being. I began weighing her on the scale at home and noticed she wasn't gaining weight since her 4 month check up in June. I went digging through my children's baby books to see what their weight was at 6 months. All of them had more than doubled their weight and were above 16 pounds. Danielle was barely 13 pounds (she weighed 8 1bs 4 oz in February). I began to suspect my milk production was diminishing. At 4 months old Danielle began nursing constantly and her hunger wasn't satisfied so I started feeding her solids also to accomodate for her appetite. She wasn't showing signs of dehydration and all seemed normal except for her feeding frenzies. I was still nursing her around the clock, but I wasn't sure I was keeping up with my daughter's needs.
I took Danielle in for her 6 month check up last week and although she is doing well, her weight is in the 5% range (13 pounds 11 ounces). My suspicions were confirmed - she is under weight. Her little growth curve has taken a downward turn. I asked the pediatrician if he thought maybe she wasn't getting enough breastmilk and he said it was possible given my history of pituitary surgery; however, he was not too concerned because my daughter's length and head circumference is growing nicely. He recommended I try to up my milk production using Fenugreek, but he suggested I ask my doctor first because of my medical history. Fenugreek spurs on prolactin and the pituitary tumor I had was both prolactin/growth hormone producing so he wasn't sure it was safe for me. I could supplement (optional) and give her some Poly Vi-Sol vitamins to help.
When I got home I tried expressing milk during feeding time to see how much milk I was producing and I could barely get an ounce! This is very abnormal for me. I called my doctor and told him what was going on and wanted to see if there was any way to know whether something was wrong with my pituitary function and he said no. He said I cannot take Fenugreek or anything that would help with milk production because it might spur on tumor growth. He advised I supplement since there is suspicion of milk depletion.
This is strange - something's wrong. I fed all three of my other kids with ease for at least a year. Although I wondered if there would be an issue breastfeeding Danielle post-pituitary surgery I had no problems right after I delivered her. Her first few months she was thriving so there was no question as to whether I could breastfeed successfully. Now it appears I am not producing enough milk. I don't know what changed from May to now. I have drank more fluids and done everything humanly possible to change this. In light of the situation I am going to have to supplement and see if it helps with Danielle's weight gain.
I took Danielle in for her 6 month check up last week and although she is doing well, her weight is in the 5% range (13 pounds 11 ounces). My suspicions were confirmed - she is under weight. Her little growth curve has taken a downward turn. I asked the pediatrician if he thought maybe she wasn't getting enough breastmilk and he said it was possible given my history of pituitary surgery; however, he was not too concerned because my daughter's length and head circumference is growing nicely. He recommended I try to up my milk production using Fenugreek, but he suggested I ask my doctor first because of my medical history. Fenugreek spurs on prolactin and the pituitary tumor I had was both prolactin/growth hormone producing so he wasn't sure it was safe for me. I could supplement (optional) and give her some Poly Vi-Sol vitamins to help.
When I got home I tried expressing milk during feeding time to see how much milk I was producing and I could barely get an ounce! This is very abnormal for me. I called my doctor and told him what was going on and wanted to see if there was any way to know whether something was wrong with my pituitary function and he said no. He said I cannot take Fenugreek or anything that would help with milk production because it might spur on tumor growth. He advised I supplement since there is suspicion of milk depletion.
This is strange - something's wrong. I fed all three of my other kids with ease for at least a year. Although I wondered if there would be an issue breastfeeding Danielle post-pituitary surgery I had no problems right after I delivered her. Her first few months she was thriving so there was no question as to whether I could breastfeed successfully. Now it appears I am not producing enough milk. I don't know what changed from May to now. I have drank more fluids and done everything humanly possible to change this. In light of the situation I am going to have to supplement and see if it helps with Danielle's weight gain.
Tuesday, January 08, 2008
Planning Ahead
I have recently received a flier from my neurosurgeon, Dr. Kelly, about two websites that have been created. They are very patient-friendly and offer an abundance of support and information regarding treatment for pituitary tumors:
Neuro-Endocrine Tumor Center at Saint John's Medical: "NETC's new comprehensive website is filled with outstanding current and accurate information. The website is designed for the patient. Dr. Kelly spent many hours writing medical content and meeting with the web-technicians to ensure that patients can use the site for education as well as a tool to help themselves and others...take time to watch a couple videos of our past support group meetings with friends and family!" - Sharmyn McGraw, Neuro-Endocrine Tumor Center's Pituitary Support Group Facilitator.
*Please note: NETC is now known as Pacific Neuroscience Institute.
Meet Sharmyn Mc Graw: A patient of Dr. Kelly's and former Cushing's sufferer. She has been in remission from the disease for several years. She is head of the Neuro-Endocrine Tumor Center's Pituitary Support Group in Southern California.
I would encourage you to take the time to sift through both sites. Treatment for pituitary tumors can be a life-altering experience; therefore, if you are thinking about having surgery or have been told it is necessary, it is important to be as educated as you can and plan. Dr. Kelly has put together an informative video where he addresses many questions people have when preparing for surgery. You can click here to watch the video or follow the link on the right side of my blog.
**Warning: the video does show a graphic video of the surgery being performed.
Neuro-Endocrine Tumor Center at Saint John's Medical: "NETC's new comprehensive website is filled with outstanding current and accurate information. The website is designed for the patient. Dr. Kelly spent many hours writing medical content and meeting with the web-technicians to ensure that patients can use the site for education as well as a tool to help themselves and others...take time to watch a couple videos of our past support group meetings with friends and family!" - Sharmyn McGraw, Neuro-Endocrine Tumor Center's Pituitary Support Group Facilitator.
*Please note: NETC is now known as Pacific Neuroscience Institute.
Meet Sharmyn Mc Graw: A patient of Dr. Kelly's and former Cushing's sufferer. She has been in remission from the disease for several years. She is head of the Neuro-Endocrine Tumor Center's Pituitary Support Group in Southern California.
I would encourage you to take the time to sift through both sites. Treatment for pituitary tumors can be a life-altering experience; therefore, if you are thinking about having surgery or have been told it is necessary, it is important to be as educated as you can and plan. Dr. Kelly has put together an informative video where he addresses many questions people have when preparing for surgery. You can click here to watch the video or follow the link on the right side of my blog.
**Warning: the video does show a graphic video of the surgery being performed.
Tuesday, August 14, 2007
Two Years Later
This Sunday will be the anniversary of my brain tumor being removed two years ago. Two Years! My future seemed so foggy when I was first diagnosed with the tumor. I couldn't see things getting any better but only worse. I wondered if I'd even see my kids get older and how I would get through homeschooling and raising three kids after surgery for a brain tumor. I stood a chance of permanently damaging my pituitary or, worse, losing my pituitary altogether. Either way, I was expecting a lifetime of hormone replacement. Of course, the thought of drilling my head was so scary. Although I knew the tumor was not cancerous, this was going to be (still is) an ongoing life struggle. There was so much uncertainty.
I settled for just having a local neurosurgeon in Dallas take my tumor out, but no - my husband would not have it. He felt we needed to find the best surgeon, even if we had to pay cash to find him. David searched endlessly on the Net, looking for answers and clues about where to go. He took the reins in the whole thing, and I am so grateful for that. I had given up any hope of this having a good outcome. The thought of having a good prognosis with a brain tumor was just not in my mind, but David never gave up hope.
Before I had my tumor removed, Dave and I searched for information about acromegaly, hoping to read a personal experience from someone who had gone through this type of surgery. I found a lot of message boards and dry medical articles, but nothing too helpful or inspiring. I decided back then that when all was said and done, I would erect a blog and speak to my experience (provided I SURVIVED the operation - ha ha!!) because it was scary facing this alone. I have come thru this surgery with normal recovery so far. Radiation was not needed after all...although it may be in the future should the tumor rear its nasty head again. My pituitary is functioning perfectly to this day, and the most fantastic news of all - I am pregnant again! If someone had fast-forwarded my life from before the surgery to the present day, I'm not sure I would have believed it. My husband had a vasectomy six years ago, so another baby wasn't in our future, or so I assumed.
I am thankful to God for the outcome I have had with this surgery. Dr. Kelly did an excellent job in preserving my pituitary function when he removed the tumor, and he has continued to provide me with great care post-surgery. He has recently moved from UCLA to Saint John's Health and is now head of the neuro-endo department. So if any further treatment is needed, I will follow up with him there. David, my family, and friends have also been a tremendous support through this whole thing and I am so blessed to have them in my life.
I will end this blog with a repost of a journal entry I wrote shortly after I found out about my tumor.
Not only did I come out of this ordeal with good results so far, now I am facing a direction in life I never thought I'd see again - labor and delivery!- Sunday, May 29, 2005
Okay...so I think the circulation has returned to my limbs, and I picked myself off the floor and am ready to proceed to whatever is next in this illness. I've researched a little on pituitary tumors, and frankly, I'd rather have a couple more kids without an epidural before proceeding to brain surgery...but I suppose we'll have to take this situation and go with it one step at a time.
Yesterday Dave and I went on a date. It's been raining here in Texas and was raining pretty hard last night. We drove into a deep water puddle on the road at about 50 miles an hour. We spun around a couple of times with the tree, telephone pole, and cars in close view. Dave and I were silent through the whole ordeal-not even a scream! In the beginning, Dave tried to steer the vehicle to get control, but then we began traveling backward and sideward into a couple of spins. Dave finally let go of the wheel because we were going so fast and realized he had no control over the situation. He made some remark about that being "FUN." But, of course, it was not my idea of a fun date...ha.
I am fortunate to be here typing something on this blog. Amazingly we stopped in the middle of the road with no scratch on the car or us (Thank you, LORD!) We spent most of our date at Sam's auto shop to make sure the car was okay and eatin' an appetizer of pretzels (sure beats a trip to the hospital!). Reflecting on this little scare we had last night, I've drawn parallels to what happened last night and the news of my tumor. Right now, I think Dave and I feel like we're spinning in the car with all the horrible things that could happen in our view. And we could try to hold the steering wheel and go in a particular direction, but the reality is that this is beyond our control. We'll have to ride it out and pray for the best outcome. Ultimately, my life is in God's hands, and my days are no less numbered than what God had ordained at my birth. I have to trust that this is just part of the plan he had for me. Last night I realized I could die in a car wreck before I die of a tumor. When everything settles, regardless of the outcome, I will be in a better situation than where I am today...
Friday, June 22, 2007
Second Surgery Update - Unexpected Delay
My husband, the kids, and I drove to California early last week. My repeat transsphenoidal surgery was scheduled for June 15th at UCLA. I met with Dr. Kelly the day before surgery to discuss the procedure as well as my medical history and recent CT and MRI results. It is difficult to know if what is seen in the left cavernous sinus is a tumor. When there is uncertainty on the MRI, the labs usually reveal whether or not a tumor exists. My IGF-1 levels recently increased, so the doctor suggested I get a GH suppression test done, and the results were normal. My prolactin levels also came back normal. In my report, it is mentioned there is a "developing mass" on the right side. Still, my doctor thinks new growth or residual tumor is unlikely. To have new growth show up out of the blue in the cavernous sinus area would be almost unheard of; of course, this was good news. Until the lab work shows otherwise, doctors conclude that both areas in question are scar tissue. After my appointment, I went for lab work to prepare for the operation.
The day of surgery arrived. Dave and I got up at two o'clock and headed into Los Angeles for check-in at 5:00 a.m. My surgery was to begin at 7:30 a.m. While I was in the surgical prep room, I met with an anesthesiologist who was a student resident at UCLA. He wrote down my medical history and noted that my period was late. He asked if there was any chance I could be pregnant. I told him I did not think so because my cycle has always been irregular, and my husband had a vasectomy six years earlier. The doctor and I agreed the chance was highly unlikely, and there wasn't a need to test for pregnancy, so I signed the consent forms to proceed with surgery. He began my intravenous line, but the vein in my hand blew to my horror. The doctor stood there speechless and looked bewildered as sweat dripped down his face. He quickly left the area to get help.
A few minutes later, another anesthesiologist walked in and was confused by the messy paperwork in front of me. She noticed I was applying pressure to my hand and asked what had happened. I explained that an attempt to start my IV was not successful. She left momentarily, and when she returned, she apologized and mentioned a last-minute mix-up. Apparently, I was removed from the other doctor's patient roster, but he didn't receive a notification. I spoke with this female doctor the night before and thought it odd that a different doctor saw me, but I didn't question the last-minute change. The new doctor reviewed my medical history, and she expressed concern about the late period. Even though pregnancy was not likely, she requested a test be ordered as a matter of procedure. She requires all patients of childbearing age to do this before they undergo surgery, especially if their cycle is off.
An IV was started in my arm, and I was wheeled to the operating room without versed because my results did not come back immediately. I was placed on the operating table and strapped down for surgery. Finally, the room was ready, and a nurse called out the OR time...it was 7:29 a.m. The assistant surgeon and nurses were standing around waiting for a call from the laboratory. My neurosurgeon was on his way to the operating room. A few seconds later, the phone rings, and the anesthesiologist hands me a paper with the pregnancy test results written in bold red, "Positive." My surgery was canceled; It was a very surreal moment.
My husband and I didn't have a chance to meet with Dr. Kelly in person again, but he says I should be okay throughout the pregnancy with the titanium mesh; it needs to come out eventually, but not until after the baby is born. You'd think I would know if I am pregnant after having three kids, but the impending surgery has masked the symptoms. I thought my sick stomach and delayed period were caused by stress or residual tumor. However, based on the information I found on the Net, I wonder if the recent increase in my IGF-1 is due to pregnancy. I'll meet with my endocrinologist regarding the news of the baby and discuss this further with him. It's certainly been a wild few weeks!
*For information regarding my current health situation click here.