My appointment was at 8am, which meant leaving the house at 5:30. Yuck. Chris drove me because he worried I might have side effects from the medication I'd be given, because he knows I hate driving in heavy traffic and he loves me. It's always good to have his support.
The test wasn't difficult. The worst part was the waiting. We arrived on time but as last time had an hour and a half wait before they started. That office is seriously overbooking. It’s frustrating but right now, we're willing to deal with it for their expertise.
At 9:30, the nurse put in an IV port and drew some blood. Next I was given a bottle of Arginine, a medication that is supposed to stimulate growth hormone, through IV. It took a half hour to pump into me. For the next two hours, we sat in the waiting room. The nurse called me back every half hour so he could draw a new vial of blood. Easy on my part just boring since I'd read all the books I'd had the previous week while I was sick :)
I'll get the results in seven to ten days.
12/17/09
11/25/09
Good MRI
Nothing has changed! The residual tumor either hasn’t grown or is growing so slow that they can’t measure it. That’s great. No surgery, no radiation at this time and I get to wait one whole year I need another scan. I’m jumping up and down excited and so thankful.
My blood work results delivered mostly good news too. All my hormones but one is fine, in fact the thyroid I’ve been concerned about inched up the normal scale another couple of points.
The exception was my IGF-1 (a factor produced in the liver in response to growth hormone stimulation). It’s low. This means my GH (growth hormone) may be low. I’ll have to undergo a GHST (growth hormone stimulation test) to make a final determination. It's scheduled on Dec. 15.
Symptoms of GH deficiency in adults include fatigue, decreased strength and exercise tolerance, anxiety, depression, thin and dry skin so it could be the reason for my persistent symptoms. An answer, a cause with a treatment that would alleviate those symptoms, great, but this hormone replacement is an expensive daily injection, not so great.
My blood work results delivered mostly good news too. All my hormones but one is fine, in fact the thyroid I’ve been concerned about inched up the normal scale another couple of points.
The exception was my IGF-1 (a factor produced in the liver in response to growth hormone stimulation). It’s low. This means my GH (growth hormone) may be low. I’ll have to undergo a GHST (growth hormone stimulation test) to make a final determination. It's scheduled on Dec. 15.
Symptoms of GH deficiency in adults include fatigue, decreased strength and exercise tolerance, anxiety, depression, thin and dry skin so it could be the reason for my persistent symptoms. An answer, a cause with a treatment that would alleviate those symptoms, great, but this hormone replacement is an expensive daily injection, not so great.
11/21/09
A Long Day
The day dawned with promise. Moving about as zombies in the grey light of early morning, eyes gritty, watching the coffee pot belch steam.
Arrived at the Imaging Center on time only to discover OHSU has two places for MRIs and I was at the wrong one. At correct location 15 minutes late, embarrassing but practically no wait time. Finished and at the doctor’s office five minutes before my appointment.
Chris and I waited. Over an hour and a half later, they called my name, processed me in so I could wait again, only now in the exam room. Knowing one of my blood tests requires a blood draw, medication injected then 30 minutes later another blood draw, my patience worn thin. 20 minutes later, that test started, another ten minutes then the physician’s assistant came in.
Same questions, same answers, same issues, same advice, feels like I repeat my first visit every time. I’m ready to climb the ugly tan walls by the time she trys to look up my MRI results which is what I’d been waiting for all that bloody time.
The system wouldn’t let her log on.
The surgical intern scheduled to explain my brain scan popped in then to say that system crashed hospital wide. I’m promised that as soon as the system is back up they’ll post my test results on MYCHART.
I’m still waiting and am guessing i’ll be until Monday or Tuesday.
Arrived at the Imaging Center on time only to discover OHSU has two places for MRIs and I was at the wrong one. At correct location 15 minutes late, embarrassing but practically no wait time. Finished and at the doctor’s office five minutes before my appointment.
Chris and I waited. Over an hour and a half later, they called my name, processed me in so I could wait again, only now in the exam room. Knowing one of my blood tests requires a blood draw, medication injected then 30 minutes later another blood draw, my patience worn thin. 20 minutes later, that test started, another ten minutes then the physician’s assistant came in.
Same questions, same answers, same issues, same advice, feels like I repeat my first visit every time. I’m ready to climb the ugly tan walls by the time she trys to look up my MRI results which is what I’d been waiting for all that bloody time.
The system wouldn’t let her log on.
The surgical intern scheduled to explain my brain scan popped in then to say that system crashed hospital wide. I’m promised that as soon as the system is back up they’ll post my test results on MYCHART.
I’m still waiting and am guessing i’ll be until Monday or Tuesday.
11/18/09
Counting the Days
My next MRI is Friday, November 20th. Nerves taunt. They will compare the results to those from May and be able to measure the rate of growth. I’ve no educated guess. At this stage, nine months post surgery I’ve no symptoms of note. It’s too early, even if it’s growing as fast as last time, for me to notice. A silent stalker, I have.
7/2/09
Post surgery update
3 months after my 2009 surgery and I feel okay.
I’m having a difficult time accepting that 3 MRI’s which showed the tumor not only still there but growing were mishandled and because of that I had over a year of misery. Anger and depression are dominating me but I’m working on it.
Headaches, odd unexplained pains and near constant nausea are gone. Thank God. Less fatigue, it's great to walk across a room and not be exhausted but it still dogs me. I feel like I'm improving a baby step at a time. I'm walking daily, reached my goal of a mile then Chris brought home the flu.
The doctors and my poor husband urge patience. That's hard. I want to be surging through life, completing all the projects left unfinished over the last years because I’ve been too tired RIGHT NOW. Instead, ever so blessed slowly I complete something.
I missed my April appointment but have the results of my 3 month follow up visit. My hormones all came in within ‘normal’ limits. My T4 is still the same low ‘normal’ and will continue to be watched.
The MRI revealed they weren't able to remove all the tumor, a small bit couldn’t be removed because it’s by the carotid artery. However they relieved my optic nerve and my vision exam last month shows improvement.
Whenever even a few cells of a pituitary tumor remains it will grow, the question is how fast. There is nothing to do but wait until November when my next MRI will measure the growth. Pituitary tumors are usually very slow growing however mine grew aggressively last time so that's little comfort. If it's growing aggressive again they may have me undergo radiation. Since I’m only 42, and radiation would kill not only the tumor but also the pituitary AND that would mean replacing all the hormones it produces for the rest of my life, we hope it’s not.
Dr. Delashaw said it could also grow so slow after ten years he'll get bored and won't even bother to monitor me. I'm hoping I bore the hell out of him.
I’m having a difficult time accepting that 3 MRI’s which showed the tumor not only still there but growing were mishandled and because of that I had over a year of misery. Anger and depression are dominating me but I’m working on it.
Headaches, odd unexplained pains and near constant nausea are gone. Thank God. Less fatigue, it's great to walk across a room and not be exhausted but it still dogs me. I feel like I'm improving a baby step at a time. I'm walking daily, reached my goal of a mile then Chris brought home the flu.
The doctors and my poor husband urge patience. That's hard. I want to be surging through life, completing all the projects left unfinished over the last years because I’ve been too tired RIGHT NOW. Instead, ever so blessed slowly I complete something.
I missed my April appointment but have the results of my 3 month follow up visit. My hormones all came in within ‘normal’ limits. My T4 is still the same low ‘normal’ and will continue to be watched.
The MRI revealed they weren't able to remove all the tumor, a small bit couldn’t be removed because it’s by the carotid artery. However they relieved my optic nerve and my vision exam last month shows improvement.
Whenever even a few cells of a pituitary tumor remains it will grow, the question is how fast. There is nothing to do but wait until November when my next MRI will measure the growth. Pituitary tumors are usually very slow growing however mine grew aggressively last time so that's little comfort. If it's growing aggressive again they may have me undergo radiation. Since I’m only 42, and radiation would kill not only the tumor but also the pituitary AND that would mean replacing all the hormones it produces for the rest of my life, we hope it’s not.
Dr. Delashaw said it could also grow so slow after ten years he'll get bored and won't even bother to monitor me. I'm hoping I bore the hell out of him.
3/8/09
First post surgery appoinment March 2009
My cortisol function tested normal which is good news Testing for all other hormones has to wait until my mid April appointment, pituitary still swollen from surgery. Pathology on tissue revealed it was benign and negative for hormones which again confirms it's non-functioning.
So I asked the nice physician's assistant why I was told in the hospital I might be put on medication. She brought up the 2007 report and allowed us to read it. It basically said the tissue then had some cells with a variegated positive which she explained meant it had some prolactin but not the concentrated amounts a prolactinoma would have. So it IS non functioning and there is no medication I can take to suppress growth. I'm glad we got that straightened out.
Then asked about my low normal T4. She explained that although my level is much lower than it had been, I'm functioning well enough that it doesn't justify risking the side effects of medication to raise it at this point. If my health declines and over time the low normal result remains consistent then taking action may be considered. Man it felt good to have questions reasonably and respectfully answered.
We were cautioned surgery could've changed everything or nothing. So I'm taking each day as it comes and hoping for the best. The next round of tests are in April.
So I asked the nice physician's assistant why I was told in the hospital I might be put on medication. She brought up the 2007 report and allowed us to read it. It basically said the tissue then had some cells with a variegated positive which she explained meant it had some prolactin but not the concentrated amounts a prolactinoma would have. So it IS non functioning and there is no medication I can take to suppress growth. I'm glad we got that straightened out.
Then asked about my low normal T4. She explained that although my level is much lower than it had been, I'm functioning well enough that it doesn't justify risking the side effects of medication to raise it at this point. If my health declines and over time the low normal result remains consistent then taking action may be considered. Man it felt good to have questions reasonably and respectfully answered.
We were cautioned surgery could've changed everything or nothing. So I'm taking each day as it comes and hoping for the best. The next round of tests are in April.
My hospital stay
My hospital stay was okay. Nurses over all were pretty cool, Doctors however were hit and miss. Since OHSU is a teaching hospital seemed like there were people popping in and out all the time and because of the fluid leak, my blood had to be drawn every four hours. I'm bruised from hands to elbows.
Sunday morning interns didn't arrive to remove the drain and nasal packing until the afternoon nurse demanded action. It took less then ten minutes to remove both and immediately my headache lessened. However since it was too late by that time to be released. Grrr.
Then one of the endocrine doctors popping in to say that I might have to go on medication. Confused because I'd been told medication wouldn't work for my type of tumor I questioned that. The guy stalked over to the computer where they'd been entering my vital signs and brought my record. There was a old report from 2007 that said last time my tumor tissue tested positive for prolactin.
What?
I started to explain what Dr. Delashaw had told us. The man interrupted, "if you’ll let me speak". Startled by his rudeness I fell silent. He made a few remarks on how medication works on prolactinomas then left. A good thing because though I was still on a lot of pain medication and weak from surgery my sweet, even tempered husband was only seconds from tossing him out.
An hour later my endocrinologist came in, said about the same thing and we just stared at her wondering if somehow we'd misunderstood in January. I decided then to ask about one of my hormones that was low 'normal' and she gave me a lecture on how giving medication when someone was ‘normal’ would lead to other problems. This was a complete 180 from her attitude during my pre surgery appointment when she assured us everyone’s normal was different, her focus wouldn't be on numbers but making me feel well. To my utter embarrassment, I started to cry and luckily she left.
Chris comforted me and after a couple moments I regained composure. We set aside our confusion, deliberately focusing on my recovery. We'll demand clarification on my follow up visit when I'm stronger.
Sunday morning interns didn't arrive to remove the drain and nasal packing until the afternoon nurse demanded action. It took less then ten minutes to remove both and immediately my headache lessened. However since it was too late by that time to be released. Grrr.
Then one of the endocrine doctors popping in to say that I might have to go on medication. Confused because I'd been told medication wouldn't work for my type of tumor I questioned that. The guy stalked over to the computer where they'd been entering my vital signs and brought my record. There was a old report from 2007 that said last time my tumor tissue tested positive for prolactin.
What?
I started to explain what Dr. Delashaw had told us. The man interrupted, "if you’ll let me speak". Startled by his rudeness I fell silent. He made a few remarks on how medication works on prolactinomas then left. A good thing because though I was still on a lot of pain medication and weak from surgery my sweet, even tempered husband was only seconds from tossing him out.
An hour later my endocrinologist came in, said about the same thing and we just stared at her wondering if somehow we'd misunderstood in January. I decided then to ask about one of my hormones that was low 'normal' and she gave me a lecture on how giving medication when someone was ‘normal’ would lead to other problems. This was a complete 180 from her attitude during my pre surgery appointment when she assured us everyone’s normal was different, her focus wouldn't be on numbers but making me feel well. To my utter embarrassment, I started to cry and luckily she left.
Chris comforted me and after a couple moments I regained composure. We set aside our confusion, deliberately focusing on my recovery. We'll demand clarification on my follow up visit when I'm stronger.
3/2/09
home from hospital and doing well
Dr. Delashaw believes he got most of my tumor. Won’t know how much remains until the follow up MRI in May.
I had a cerebral spinal fluid leak, a complication that kept me in hospital a couple days longer. A drain was placed at bottom of my spine to drain off spinal fluid to keep pressure off the leak until it repaired itself. Three days of sitting up in bed only allowed to move if nurse assisted sucked. Horrific headaches that increased dramatically after any movement, so for three days I remained mostly still. Sunday afternoon they finally removed the drain and nasal packing. It felt amazing to move, lay down and breath through my nose.
Last Monday afternoon I came home. I'm doing okay. As expected I'm sleepy, tired and have throbbing headaches that haunt me but every day is better than the one before.
Have appointment Friday, the start of several endocrinology appointments to see how my pituitary is functioning.
I had a cerebral spinal fluid leak, a complication that kept me in hospital a couple days longer. A drain was placed at bottom of my spine to drain off spinal fluid to keep pressure off the leak until it repaired itself. Three days of sitting up in bed only allowed to move if nurse assisted sucked. Horrific headaches that increased dramatically after any movement, so for three days I remained mostly still. Sunday afternoon they finally removed the drain and nasal packing. It felt amazing to move, lay down and breath through my nose.
Last Monday afternoon I came home. I'm doing okay. As expected I'm sleepy, tired and have throbbing headaches that haunt me but every day is better than the one before.
Have appointment Friday, the start of several endocrinology appointments to see how my pituitary is functioning.
2/17/09
hormone levels
My hormone test results came back within normal range, some on the low side of the scale but nothing is bad enough to medicate. They'll be checked again right after surgery then again in 3 months, another 3 months and so on.
This confirms it's a non-functioning tumor. At its current size, if it was any other kind of tumor at least one of my hormone levels would be elevated.
With these specialist I feel confident that this time I'll be able to properly manage this. I'll be healthy again. I’ll be monitored by professionals that will know when the tumor grows again.
I'm hoping by the time I have to have surgery yet again one of my brilliant sons who are interested in engineering (bio tech) will develop a better solution like tiny robots injected into the blood stream, swim to the tumor and kill it. Sounds like science fiction doesn't it but it’s currently being worked on. As long as they don’t travel in a yellow submarine. :)
Surgery’s Thursday. Don’t know time yet; have to call the day before to get that. Chris'll be at hospital with me. Mom'll be there part of the time. Last time she waited with the boys at my home and rearranged my entire house including the garage trying to keep busy. This time Jason will be with his brothers at our home, easier on the boys to continue normal routine than wait for hours at the hospital with not much to distract them – last time my surgery was over five hours long :(
This confirms it's a non-functioning tumor. At its current size, if it was any other kind of tumor at least one of my hormone levels would be elevated.
With these specialist I feel confident that this time I'll be able to properly manage this. I'll be healthy again. I’ll be monitored by professionals that will know when the tumor grows again.
I'm hoping by the time I have to have surgery yet again one of my brilliant sons who are interested in engineering (bio tech) will develop a better solution like tiny robots injected into the blood stream, swim to the tumor and kill it. Sounds like science fiction doesn't it but it’s currently being worked on. As long as they don’t travel in a yellow submarine. :)
Surgery’s Thursday. Don’t know time yet; have to call the day before to get that. Chris'll be at hospital with me. Mom'll be there part of the time. Last time she waited with the boys at my home and rearranged my entire house including the garage trying to keep busy. This time Jason will be with his brothers at our home, easier on the boys to continue normal routine than wait for hours at the hospital with not much to distract them – last time my surgery was over five hours long :(
1/26/09
consultation results
Friday was long day. My appointment started at nine and we walked out of OHSU a couple minutes past noon. So much information my head hurts and this time I don't think I can blame the tumor.
Blood work results will take at least a week.
Dr. Delashaw, the neurosurgeon and specialist on primary brain tumors, reviewed all my MRI’s and concluded that in 2006 my pituitary tumor was misdiagnosed. My elevated prolactin then was a ‘stalk’ effect, the mass of the tumor pressing against the pituitary cells caused malfunction.
I have a non-functioning pituitary tumor. It doesn't secret hormones which explains why I felt so bad (tumor was growing)yet my hormone levels remained normal. I also explains why the medication I was given didn’t effect it. Medication doesn't effect a non functioning tumor.
Dr. Delashaw examined all my previous MRI's and informed us that the 2007 surgery didn't remove all the tumor as I'd been told.
So the mass effects of the tumor which is now larger than it was prior to surgery is the root cause of my medical. Nice to know I’m not crazy.
I wonder why just one of the many doctors I saw last year didn’t take 5 minutes and call a specialist like Dr. Delashaw. Why didn't they make certain before patting me figuratively on the head? Before saying ‘while its understandable why what I’d been though would make me anxious about my pituitary not everything is related to it.’ Well it was and is. The pituitary isn’t called the master gland for nothing. 5 minutes vs. a year of my life. Grrr.
Moving on.
When a non-functioning tumor grows to the point it's causing problems there are few options. At this time surgery is it.
Radiation isn’t recommended because it would cause me to lose all pituitary function and if that can be avoided it should be.
Dr. Delashaw wants to schedule surgery ASAP. He’ll try to remove as much as possible using an inoperative MRI, detailed imaging during surgery but warns full removal is usually impossible. Lessening the pressure buys me functioning time. Surgery isn’t a solution but a management tool. I’ll be managing the care of my pituitary for the rest of my life. I’ll probably have to have surgery yet again but the hope is that if enough is removed it’ll take many years before it regrows to the point where I'm at now, where it’s causing problems.
Surgery is scheduled for Feb. 19th 2009 at OHSU.
Blood work results will take at least a week.
Dr. Delashaw, the neurosurgeon and specialist on primary brain tumors, reviewed all my MRI’s and concluded that in 2006 my pituitary tumor was misdiagnosed. My elevated prolactin then was a ‘stalk’ effect, the mass of the tumor pressing against the pituitary cells caused malfunction.
I have a non-functioning pituitary tumor. It doesn't secret hormones which explains why I felt so bad (tumor was growing)yet my hormone levels remained normal. I also explains why the medication I was given didn’t effect it. Medication doesn't effect a non functioning tumor.
Dr. Delashaw examined all my previous MRI's and informed us that the 2007 surgery didn't remove all the tumor as I'd been told.
So the mass effects of the tumor which is now larger than it was prior to surgery is the root cause of my medical. Nice to know I’m not crazy.
I wonder why just one of the many doctors I saw last year didn’t take 5 minutes and call a specialist like Dr. Delashaw. Why didn't they make certain before patting me figuratively on the head? Before saying ‘while its understandable why what I’d been though would make me anxious about my pituitary not everything is related to it.’ Well it was and is. The pituitary isn’t called the master gland for nothing. 5 minutes vs. a year of my life. Grrr.
Moving on.
When a non-functioning tumor grows to the point it's causing problems there are few options. At this time surgery is it.
Radiation isn’t recommended because it would cause me to lose all pituitary function and if that can be avoided it should be.
Dr. Delashaw wants to schedule surgery ASAP. He’ll try to remove as much as possible using an inoperative MRI, detailed imaging during surgery but warns full removal is usually impossible. Lessening the pressure buys me functioning time. Surgery isn’t a solution but a management tool. I’ll be managing the care of my pituitary for the rest of my life. I’ll probably have to have surgery yet again but the hope is that if enough is removed it’ll take many years before it regrows to the point where I'm at now, where it’s causing problems.
Surgery is scheduled for Feb. 19th 2009 at OHSU.
1/12/09
An Appointment
Dr. Delashaw's assistant just called and I scheduled an appointment!
On Jan. 23 I hope to have a least some of my questions answered.
Fingers crossed.
On Jan. 23 I hope to have a least some of my questions answered.
Fingers crossed.
1/10/09
Worry or tumor?
I feel so emotional, wanting to scream it’s not fair. I'm having a hard time sleeping with a monster headache for the last 12 hours.
I wonder is it caused by worry or the tumor?
I wish I could fast forward to summer, I'd be out camping with my hubby and boys and all this would be a fading memory.
I wonder is it caused by worry or the tumor?
I wish I could fast forward to summer, I'd be out camping with my hubby and boys and all this would be a fading memory.
1/7/09
A wonderful person
in HR has stepped in to help straighten out the snags between the doctors' offices and our insurance. I should hear from Dr. Delashaw by tomorrow.
Fingers crossed I get an appointment, some answers and options soon. :)
Fingers crossed I get an appointment, some answers and options soon. :)
1/6/09
waiting for an appointment
Still haven't gotten in to see Dr. Delashaw.
Sigh
It's hard to wait for answers and information on options, I want to know NOW :)
Think speedy thoughts for me please.
Sigh
It's hard to wait for answers and information on options, I want to know NOW :)
Think speedy thoughts for me please.
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