No. There are different methods of delivering radiation to the pituitary gland. Conventional (fractionated) radiation refers to delivery of a small amount of radiation every day for 4 to 5 weeks. Stereotactic radiation refers to delivery of a precisely focused beam of radiation to the remaining tumor, usually as one treatment (for example, the Gamma Knife, LINEAC, proton beam).
The decision as to which type of radiation to administer must be made only after a careful review of the MRI scan to assess the size and location of the residual tumor. A large tumor that is near the optic chiasm (eye nerves) is not suitable for stereotactic radiation because of the intensity (radiation dose) of the single treatment and risk of damage to vision. Stereotactic radiation is reserved for residual tumor that is not near the optic chiasm. Surgery is sometimes needed to remove the portion of the tumor that is near the optic chiasm so that more effective radiation therapy can be given. This is what we're hoping was done with this surgery.
A referral to the radiologist was sent on Nov. 16th. I'm waiting to hear from his office to schedule an appointment. My endocrinologist believes I should hear from him this week. However the surgical swelling must go down then a post surgery MRI must be done before he can recommend what type of radiation needs done.
I'm still hoping for the one shot deal. The thought of a four hour daily round trip not including the time for the radiation is overwhelming. If everyone could wish for, pray for, think positive thoughts for the stereotactic - one shot- radiation I'd be most grateful.
11/30/10
Is radiation necessary?
Radiation to the pituitary is not the first line of treatment for most pituitary tumors. It doesn't produce an immediate effect to shrink the tumor. It may take years to be effective.
In my case 3 surgeries in 3 years 2007, 2009, 2010 shows a tumor with an aggressive re growth pattern. Radiation will, most likely, eventually wipe out my pituitary function but without it, odds are, that would also be the end result of countless re growths and repeated surgeries. Indeed without radiation I could lose all function and still have a re growth that threatened my optic nerves and surrounding brain tissue.
Bottom line, I don't have the stomach for nor the courage to contemplate surgery every 18 months.
In my case 3 surgeries in 3 years 2007, 2009, 2010 shows a tumor with an aggressive re growth pattern. Radiation will, most likely, eventually wipe out my pituitary function but without it, odds are, that would also be the end result of countless re growths and repeated surgeries. Indeed without radiation I could lose all function and still have a re growth that threatened my optic nerves and surrounding brain tissue.
Bottom line, I don't have the stomach for nor the courage to contemplate surgery every 18 months.
Good days & Bad days
Overall I believe I'm doing fairly well. I've good days where other than a dull headache and fatigue I almost feel normal. Then there are days like the last two. I've been very sensitive to light and by late afternoon that dull headache has ballooned into a major event.
Somedays I'm on an even keel, emotionally, somedays I only think I am and it's easy to know the difference.
On good days-
Question to my darling husband - Am I doing good hon?
Answer - You're doing great. You mind if we go hunting?
Question to my eldest son - Am I doing good bug?
Answer - You're doing awesome. Are you using the stuff we got you?
Question to my middle son - Am I doing good?
Answer - Yep, are you ready to build the fish tank with me?
Question to my youngest son - Am I doing good?
Answer - Yeah, so how are you doing on your story?
On bad days-
Question to my darling husband - Am I being overemotional hon?
Answer - I love you honey.
Question to my eldest son - Am I being overemotional bug?
Answer - I love you mom.
Question to my middle son - Am I being overemotional?
Answer - I love you mom.
Question to my youngest son - Am I being overemotional?
Answer - I love you mom.
My guys are pretty cool. I'm lucky to have them.
Somedays I'm on an even keel, emotionally, somedays I only think I am and it's easy to know the difference.
On good days-
Question to my darling husband - Am I doing good hon?
Answer - You're doing great. You mind if we go hunting?
Question to my eldest son - Am I doing good bug?
Answer - You're doing awesome. Are you using the stuff we got you?
Question to my middle son - Am I doing good?
Answer - Yep, are you ready to build the fish tank with me?
Question to my youngest son - Am I doing good?
Answer - Yeah, so how are you doing on your story?
On bad days-
Question to my darling husband - Am I being overemotional hon?
Answer - I love you honey.
Question to my eldest son - Am I being overemotional bug?
Answer - I love you mom.
Question to my middle son - Am I being overemotional?
Answer - I love you mom.
Question to my youngest son - Am I being overemotional?
Answer - I love you mom.
My guys are pretty cool. I'm lucky to have them.
The results
My basic blood work came back normal. My cortisol levels also were within normal limits but way different from my previous tests so I've a question in to my doctor as to why.
In the mean time I was told to wean off the medication completely. 11/26/10 was my last day and yep Saturday was not fun. At least it was Chris' day off so he didn't miss work for me.
In the mean time I was told to wean off the medication completely. 11/26/10 was my last day and yep Saturday was not fun. At least it was Chris' day off so he didn't miss work for me.
Testing Day
The day dawns icy, cold and snowing. The boys excited about school being canceled have done what any decent teenager does to celebrate. Yep they went back to bed.
We head out extra early because of the weather. The frosty air tortures my raw sinus'. I withheld the medication as instructed and am slightly nauseous when we finally arrive in one piece and on time thanks to hubby's driving skills. We slid only once the whole trip, as we left town.
Doctor appointments and testing involves a lot of waiting. This test requires my blood to be drawn, medication given to stimulate a response, a 30 minute wait then more blood drawn. They test my initial level, then my level when stimulated also they do a basic blood panel to check my sodium and glucose and etc. to make certain I'm doing okay with those post surgery.
During this time the NP(nurse practitioner)comes in, asks some questions to see how I'm doing, and looks up my tumor's pathology report. It's fine, basically the same as last time which is at once reassuring - it didn't morph into something dastardly - and disappointing - they can't tell me why the darn thing grows back so aggressively.
However NP thinks based on my answers and her short exam that I can start to wean off the hydrocortisone. I'm to take a half dose that day and the next while we wait for the blood work to confirm I'll be all right without it.
Once I'm done there, we get to ride the tram up to the main hospital to see the nose surgeon. Interesting but the chill air is still not fun. More waiting. Then in to have the doctor's assistant shoot bitter, nasty fluid up my nose - supposed to numb it - then nasal passages examined and cleaned. The experience is overrated.
Long drive home, I'm exhausted, hurting and even though I've taken the half dose I'm struggling with nausea but trying not to make that obvious to Chris. He's scheduled to work, already minutes late and I already feel like a giant burden.
Unfortunately the nausea only gets worse, eventually I call my poor husband home. The doctors do not want me to throw up under any circumstances. He plies me with sprite and crackers as we both hope I can hold it together because I do not want to be back in the hospital. It finally eases in the wee hours. This experience too was way overrated and one I'd just as soon not repeat.
We head out extra early because of the weather. The frosty air tortures my raw sinus'. I withheld the medication as instructed and am slightly nauseous when we finally arrive in one piece and on time thanks to hubby's driving skills. We slid only once the whole trip, as we left town.
Doctor appointments and testing involves a lot of waiting. This test requires my blood to be drawn, medication given to stimulate a response, a 30 minute wait then more blood drawn. They test my initial level, then my level when stimulated also they do a basic blood panel to check my sodium and glucose and etc. to make certain I'm doing okay with those post surgery.
During this time the NP(nurse practitioner)comes in, asks some questions to see how I'm doing, and looks up my tumor's pathology report. It's fine, basically the same as last time which is at once reassuring - it didn't morph into something dastardly - and disappointing - they can't tell me why the darn thing grows back so aggressively.
However NP thinks based on my answers and her short exam that I can start to wean off the hydrocortisone. I'm to take a half dose that day and the next while we wait for the blood work to confirm I'll be all right without it.
Once I'm done there, we get to ride the tram up to the main hospital to see the nose surgeon. Interesting but the chill air is still not fun. More waiting. Then in to have the doctor's assistant shoot bitter, nasty fluid up my nose - supposed to numb it - then nasal passages examined and cleaned. The experience is overrated.
Long drive home, I'm exhausted, hurting and even though I've taken the half dose I'm struggling with nausea but trying not to make that obvious to Chris. He's scheduled to work, already minutes late and I already feel like a giant burden.
Unfortunately the nausea only gets worse, eventually I call my poor husband home. The doctors do not want me to throw up under any circumstances. He plies me with sprite and crackers as we both hope I can hold it together because I do not want to be back in the hospital. It finally eases in the wee hours. This experience too was way overrated and one I'd just as soon not repeat.
After Surgery
Adrenal insufficiency is the deficiency of one or more hormones made by the adrenal glands. Pituitary disorders, tumors and/or surgery can cause low levels of the adrenal hormone, Cortisol.
As a pre caution I was given hydrocortisone following surgery and took it once a day until 11/23/10. On that day we drove up to OHSU so they could test me. The hope always is that I've retained enough function so I don't have to take the steroid any longer.
Ever drank a ton of caffeine trying to stay awake when you're exhausted? That's how Hydrocortisone makes me feel. Internally jittery, like I can feel my heartbeat and once a week or so passes from surgery though I'm still easily tired I struggle with insomnia.
If I ever have to be on it for longer than a few weeks I'm told my body would adjust to it.
As a pre caution I was given hydrocortisone following surgery and took it once a day until 11/23/10. On that day we drove up to OHSU so they could test me. The hope always is that I've retained enough function so I don't have to take the steroid any longer.
Ever drank a ton of caffeine trying to stay awake when you're exhausted? That's how Hydrocortisone makes me feel. Internally jittery, like I can feel my heartbeat and once a week or so passes from surgery though I'm still easily tired I struggle with insomnia.
If I ever have to be on it for longer than a few weeks I'm told my body would adjust to it.
11/20/10
What's next?
I'll be back at OHSU for testing this coming Tuesday. Following surgery they put me on hydrocort, a steroid which replaces an important hormone, cortisol. Sometimes the tumor growth or the surgery can cause secondary adrenal insufficiency.
The doctor was clear that between the tumor re growing, the third surgery and the radiation, the failure of more hormones is expected. The status of my pituitary function going in wasn't great. She said most people following surgery and radiation would likely lose some/all function over a period of five to seven years. She said in my case she expects it in less than two. That's simply reality. It sucks but it is.
Hopefully the test will reveal that I can still produce that one on my own. At least for a while :) one less medication to take for as long as possible.
Also hoping my biopsy results will be in by then. Radiology won't start the scheduling process for that until they see the tissue test report.
As much as I'm not looking forward to it, I'm a rip the Band-Aid off kind of girl. I'm already feeling crappy. The sooner it's done, the sooner I can start focusing on feeling better instead of what test, what procedure is next.
The doctor was clear that between the tumor re growing, the third surgery and the radiation, the failure of more hormones is expected. The status of my pituitary function going in wasn't great. She said most people following surgery and radiation would likely lose some/all function over a period of five to seven years. She said in my case she expects it in less than two. That's simply reality. It sucks but it is.
Hopefully the test will reveal that I can still produce that one on my own. At least for a while :) one less medication to take for as long as possible.
Also hoping my biopsy results will be in by then. Radiology won't start the scheduling process for that until they see the tissue test report.
As much as I'm not looking forward to it, I'm a rip the Band-Aid off kind of girl. I'm already feeling crappy. The sooner it's done, the sooner I can start focusing on feeling better instead of what test, what procedure is next.
How am I?
One week and one day from surgery. I've a nagging a sinus headache, nasal congestion and raw nose. I'm taking saline nasal spray, to help keep inner irritated nose moist, decongestant to help the headache and was on strong pain medication.
Today was my first full day with only over the counter meds and it was a little rough. Nice to be off of the prescription stuff though, in addition to feeling out of it, woozy and/or spacey, my emotions were all over the place.
Fatigue, my all to familiar friend had returned last month when they ceased my GH, is worse now. If my hurting head didn't make sleep uncomfortable at times, I wouldn't be out of bed much. I'm very sensitive to light and noise and retreat to my dark bedroom for hours. Over the next two-three weeks my pain should lessen, the fatigue depends on what's due to the surgery and what has a hormonal cause.
Tuesday I had blood work done. Sometimes the pituitary can mess up it's signal to the kidneys after surgery and basically flush all sorts of good stuff out of your body. My sodium and electrolytes were all fine. One more hurdle crossed.
Today was my first full day with only over the counter meds and it was a little rough. Nice to be off of the prescription stuff though, in addition to feeling out of it, woozy and/or spacey, my emotions were all over the place.
Fatigue, my all to familiar friend had returned last month when they ceased my GH, is worse now. If my hurting head didn't make sleep uncomfortable at times, I wouldn't be out of bed much. I'm very sensitive to light and noise and retreat to my dark bedroom for hours. Over the next two-three weeks my pain should lessen, the fatigue depends on what's due to the surgery and what has a hormonal cause.
Tuesday I had blood work done. Sometimes the pituitary can mess up it's signal to the kidneys after surgery and basically flush all sorts of good stuff out of your body. My sodium and electrolytes were all fine. One more hurdle crossed.
Short Stay
The doctors wouldn't aggree to send me home Thursday night. However the surgeon was pleased that the tumor was 'soft' and therefore what he could remove was 'easily' done. As I've posted before my tumor cannot be completely removed since part of it is about the carotid artery, which supplies the brain.
However since I didn't have a leak, I had a much shorter confinment. I was discharged Saturday afternoon, tired, hurting but very happy to come home.
Still not up for happy dance yet but image snoopy doing his thing for me. :)
However since I didn't have a leak, I had a much shorter confinment. I was discharged Saturday afternoon, tired, hurting but very happy to come home.
Still not up for happy dance yet but image snoopy doing his thing for me. :)
Day of Surgery
I was told to be at OHSU by 7:30am on Thursday Nov. 11th. They couldn't give me time of surgery but said I was second in line.
It was a long quiet dark drive. Countless thoughts zipping through my mind but few words spoken. It felt so familiar to park in the patient garage. Only a little over four months have passed since Chris' spinal fusion and it was one week shy of twenty one months since my previous pituitary surgery. Too familiar by far. I felt trapped by circumstances, by the tumor, by the doctor and my steadfast husband who while he gently held my hand also assured me I wasn't leaving until they discharged me - after the surgery.
As is the typical time warping of hospitals, I was finally wheeled back into after 1:30pm. So tired and worn out by then all I wanted was for it to be done and over with.
They removed as much as possible transsphenoidally. The approach is through the sphenoid sinus, one of the facial air spaces behind the nose. An incision was made in the back wall of the nose and the sphenoid sinus is entered directly. Our eldest told me afterward that when told I didn't have a CSF leak, Chris looked like he wanted to hug the doctor. When I woke with no nasty packing, headaching but not so badly I wanted to rip it off, I knew instantly I wasn't leaking, heartfelt relief enveloped me. Too exhausted for a happy dance at that moment, I settled for a large smile. A small miracle to me. Many thanks to all who keep me in their thoughts and prayers that day.
BTW if my medicated memory is correct, once I was settled in my room Chris and Jason did cute happy dances on my request. :)
It was a long quiet dark drive. Countless thoughts zipping through my mind but few words spoken. It felt so familiar to park in the patient garage. Only a little over four months have passed since Chris' spinal fusion and it was one week shy of twenty one months since my previous pituitary surgery. Too familiar by far. I felt trapped by circumstances, by the tumor, by the doctor and my steadfast husband who while he gently held my hand also assured me I wasn't leaving until they discharged me - after the surgery.
As is the typical time warping of hospitals, I was finally wheeled back into after 1:30pm. So tired and worn out by then all I wanted was for it to be done and over with.
They removed as much as possible transsphenoidally. The approach is through the sphenoid sinus, one of the facial air spaces behind the nose. An incision was made in the back wall of the nose and the sphenoid sinus is entered directly. Our eldest told me afterward that when told I didn't have a CSF leak, Chris looked like he wanted to hug the doctor. When I woke with no nasty packing, headaching but not so badly I wanted to rip it off, I knew instantly I wasn't leaking, heartfelt relief enveloped me. Too exhausted for a happy dance at that moment, I settled for a large smile. A small miracle to me. Many thanks to all who keep me in their thoughts and prayers that day.
BTW if my medicated memory is correct, once I was settled in my room Chris and Jason did cute happy dances on my request. :)
11/2/10
Halloween started with the Headache from Hell
Woken by the worst headache I've had in a very long time. It haunted me until the wee hours of the following morning. Took the limit of pain medication then being slightly stubborn went out for a couple hours of family fun. I was toast the rest of the day and feel worn out today. Pleased the pain subsided to a dull pressure ache. Hope it remains such for a while.
This headache came with an odd complaint. My eyes felt and still feel painfully dry, especially my left hurts. Eye drops provide temporary relief, I've gone through half a bottle.
Doctor's comment on the above. "You can get both vessel constriction and dilation which may be an explanation." (Now if I only understood what that meant.) And I'm to use whatever keeps me comfortable, pain medication. eye drops etc. (Do large doses of chocolate count?) until surgery. Nothing else can be done until afterwards.
8 more days of waiting.
This headache came with an odd complaint. My eyes felt and still feel painfully dry, especially my left hurts. Eye drops provide temporary relief, I've gone through half a bottle.
Doctor's comment on the above. "You can get both vessel constriction and dilation which may be an explanation." (Now if I only understood what that meant.) And I'm to use whatever keeps me comfortable, pain medication. eye drops etc. (Do large doses of chocolate count?) until surgery. Nothing else can be done until afterwards.
8 more days of waiting.
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