OK... Time to start my magic pill. The pill that's going to shrink the tumor and get all of my messed up hormones back to where they should be. Dostinex is it's name. It's so little... about half the size of a baby aspirin. My dose is half of a pill too.
11/30/08 1st dose - no side effects so far. Cool.
12/04/08 2nd dose - Still moving along with no side effects. Hopefully this will be an easy treatment.
I continued to research the type of tumor and treatment for it. The more I looked the more I realized this was something that I was most likely going to have to deal with for a long time if not forever.
12/07/08 3rd dose - and here come the side effects. Headache, nausea and dizziness. All but the dizziness were treatable with over the counter medications. If things don't get too much worse this should still work out OK.
12/11/08 4th dose - Same issues as the as 3rd dose. Again treatable with the OTC meds. Apparently though I have become a bit 'short fused’. I'll take Lori's word for it.
12/14/08 - Oops, missed my dose. I'm told I'm still rather cranky as well and perhaps it is getting worse. I start to wonder if this is going to continue like this for months I would have been better off having surgery!
12/18/08 5th dose - Headache, dizzy and REALLY cranky. I have absolutely zero patience for anything. The slightest things set me off. Something new began this time as well, I started spacing out after taking the pill. It lasted for many hours.
Unfortunately I have no idea how long I will have to take this freggin pill. I know I need to take it at least until I see the doctor again in 6 weeks but at this rate I'm not sure I can do that. Perhaps once I get used to it the side effects will wear off. I hate the thing at this point.
12/21/08 6th dose - Almost the same as above but we added 24 hours of weakness. AWESOME! I guess the good news was the nausea was not a factor anymore.
12/25/08 7th dose - Christmas day. I take my pill right after Christmas dinner. We're at Tim and Nancie's house with the family. After I take the pill and start spacing out it's almost like I wasn't really there. Like I was watching everyone as they were talking to me and about me but I wasn't actually there.
Overall the crankiness was wearing off as the weakness and spaciness increased. I continued to get the headaches but they were treatable with Tylenol. The dizziness was hardly there as well. I just hope the thing is working.
12/28/08 8th dose - Some serious sleepiness and weakness now. Both lasting for about 24 hours.
01/01/09 9th dose - Same as 8th dose. I am basically useless at this point for 24 hours. I can't work. I can't do anything. I have to keep going though, I have my next appointment with the Endocrinologist on the 29th. Lori and I decide that no matter what I have to go at least until I do my labs before that appointment to get an accurate reading on what the medicine is doing.
One thing we decided to do was for me to change my dosing schedule so I can be as productive in my up time as possible. Here's what we figured might work. Friday night, after work, I'll take a pill. That will make Saturday a do nothing day. Tuesday morning, after I check emails and make any phone calls I need to make, I'll take the next one. Hopefully doing it this way I will only lose Tuesday and will be OK by Wednesday, even if I have to sleep in a bit.
Oh yea, I started showing signs of depression as well at this point. Perhaps finding the quote "once a pituitary patient always a pituitary patient" didn't help.
I did find this as well which I'm guessing didn't help either. "After a normal serum prolactin level has been maintained for 6 months, Dostinex may be discontinued, with periodic monitoring of the serum prolactin level to determine whether or when treatment with Dostinex should be reinstituted." 6 MONTHS!!!! AFTER MY LEVELS ARE NORMAL!!!! Holy Crap! There is no way I can do this for who knows how long! I have to figure something else out.
I start looking for someone who specializes in pituitary tumors. I have to find a true expert so I can get the absolute best care and the most accurate answers to my questions.
01/06/09 10th dose - An incredible amount of weakness and fatigue but still lasting for only 24 hours. Unfortunately even the headaches are responding less to Tylenol.
Something happened January 8th. I sat up to go to bed and suddenly got a sharp pain right behind my eye. A long night later I'm sitting on the couch at 5:00am literally in tears debating on whether to go to the hospital. The sharp pain still there and when I stand up it's unbearable. I have never had such a pain in my life! A few hours later Lori and I decide I should go to the hospital. Due to her non-existent immune system Lori can't go to the hospital so we wake up Mike and he takes me. Lori thinks I'm having some kind of stroke or something, me, I just think the tumor popped! After an MRI they tell me the tumor is still there and is OK (I thought for sure it had ruptured or something). The MRI did show an infection in the sphenoid sinuses. Great, that's all I need. Something else to give me headaches. 10 days of antibiotics for me. I don't believe a sinus infection can cause the pain I was having but as long as the pain was gone, the MRI looked OK and the pain didn't return I really didn't care what the cause was.
01/09/09 11th dose - The fatigue and weakness continued but now it's lasting a bit longer than 24 hours. I also started getting tremors. First in the hands then at times my whole body but mostly the extremities. I can hardly hold a cup of coffee.
01/13/09 12th dose - The extreme weakness and fatigue lasted for almost 30 hours this time. My depression symptoms were very obvious to others.
We find there are a few "pituitary clinics" around. One at Shands Hospital in Gainesville and one at the Emory Clinic in Atlanta. We'll have to look more into both of these...
01/16/09 13th dose - The side effects are lasting longer and longer, at least 36 hours now. It is becoming increasingly harder to concentrate for around 48 hours. My work is seriously suffering at this point as well.
01/20/09 14th dose - Fatigue, general weakness, headache, tremors & brain fog. All lasting for over 36 hours. The brain fog continued for another 24. I have decided at
this point I can no longer continue to take this medicine in it's current dose and have stopped. I did my lab work for my appointment on the 29th. Even if the medicine was working we will have to do something else.
We are going to keep my appointment with my current Endocrinologist but have decided to go to the Emory Clinic in Atlanta for further treatment. We will get the latest labs on the 29th as well as a copy of the doctor's notes. A few years back, when Lori was having serious trouble with her kidneys (Lupus Nephritis), we went to both Shands and Emory. Everything at Emory was so much better than at Shands we felt it was worth the extra drive time to go there.
01/29/09 Dr Appointment - well as it turns out the Dostinex was working. It's just too bad the side effects were unbearable. The Doctor has "some ideas" of what we can do next but we have already decided to not return. We don't tell him because we want his notes on what he wants to do next to be based on my returning. We were afraid he would hold back if he knew we were not returning and we did not want that. We also want to see if his ideas were close to those of the "experts" at Emory.
Next stop - The Pituitary Center at The Emory Clinic in Atlanta Georgia!
Thursday, April 23, 2009
Monday, April 20, 2009
Finally Some Real Answers
Two weeks have passed. The initial shock of "everything" has passed. It has become more of an anticipation to see just what it is I have and what will be next. It is November 20th, one week until we have 24 people at the house for Thanksgiving. Lori was sick so I did the trip to the endocrinologist on my own.
I sign in and wait. I call Lori to let her know I am there and to talk to her a bit. Gotta go... nurse is coming for me. 5 minutes later I'm sitting in the office anxiously awaiting the doctor... and here he is.
Good news Mr. Lyons. Your prolcatin level is elevated. That means the type of tumor you have should be treatable with a pill. If the pill works it should shrink your tumor he tells me. I remember thinking to myself yay! He also tells me my testosterone level is basically non existent, but that is to be expected with the elevated prolactin level. We review a few other results and he says we will recheck everything in 60 days then do another MRI in 90 days. I make my follow up appointment, grab a copy of my labs and prescription and head out to the car to call Lori and let her knoweverything.
It looks like it's a prolactinoma I tell Lori, that's the kind that you can treat with medicine and not have to do surgery (yay again). I take the lab results out of the little black book we bring with us to Dr. appointments and look at the actual numbers:
Prolactin (which is the hormone pregnant women have an abundance of to help create breast milk) Reference range = 2.0 to 18.0o ng/ml My level = 119.5
Testosterone(I think we all have a pretty good idea what that one is) Reference range = 250 to 1,100 ng/dl My level = 21
There were some other things messed up as well but those two were the biggie.
Wow... OK. So basically I had the prolactin of a pregnant woman and the testosterone of a little girl. AWESOME! It is what it is though and at least I'm not going to have to have surgery anytime soon.
Overt the next 24 hours I received my share of ribbing from friends and family, including one friend who had to "call me back later cause there were too many jokes going through his head" when I told him. I joked about it when I told them so they all knew it was OK to have a laugh at my expense. What else can you do.
I fill my prescription but decide to wait till after Thanksgiving to start actually taking my pill. I had no idea what (if any) side effects there would be so both Lori and I thought it would be better to wait a week. We were both just relieved it is just a pill, and such a tiny one at that. Hope it works. It's now Sunday. Everyone is gone and it's time to take "the pill". Here goes...
I sign in and wait. I call Lori to let her know I am there and to talk to her a bit. Gotta go... nurse is coming for me. 5 minutes later I'm sitting in the office anxiously awaiting the doctor... and here he is.
Good news Mr. Lyons. Your prolcatin level is elevated. That means the type of tumor you have should be treatable with a pill. If the pill works it should shrink your tumor he tells me. I remember thinking to myself yay! He also tells me my testosterone level is basically non existent, but that is to be expected with the elevated prolactin level. We review a few other results and he says we will recheck everything in 60 days then do another MRI in 90 days. I make my follow up appointment, grab a copy of my labs and prescription and head out to the car to call Lori and let her knoweverything.
It looks like it's a prolactinoma I tell Lori, that's the kind that you can treat with medicine and not have to do surgery (yay again). I take the lab results out of the little black book we bring with us to Dr. appointments and look at the actual numbers:
Prolactin (which is the hormone pregnant women have an abundance of to help create breast milk) Reference range = 2.0 to 18.0o ng/ml My level = 119.5
Testosterone(I think we all have a pretty good idea what that one is) Reference range = 250 to 1,100 ng/dl My level = 21
There were some other things messed up as well but those two were the biggie.
Wow... OK. So basically I had the prolactin of a pregnant woman and the testosterone of a little girl. AWESOME! It is what it is though and at least I'm not going to have to have surgery anytime soon.
Overt the next 24 hours I received my share of ribbing from friends and family, including one friend who had to "call me back later cause there were too many jokes going through his head" when I told him. I joked about it when I told them so they all knew it was OK to have a laugh at my expense. What else can you do.
I fill my prescription but decide to wait till after Thanksgiving to start actually taking my pill. I had no idea what (if any) side effects there would be so both Lori and I thought it would be better to wait a week. We were both just relieved it is just a pill, and such a tiny one at that. Hope it works. It's now Sunday. Everyone is gone and it's time to take "the pill". Here goes...
Saturday, April 4, 2009
Where was I... Oh yea
Where was I... Oh yea - I would have been better off if the phone call had waited till after the weekend. Got it.
So, I get the phone call and Dr. P tells me I have a mass on my Pituitary gland. She really sounded concerned but assured me it wasn't life threatening or anything. Her opinion was it would have to be removed, if not now then sometime in the future. She confirmed my fax number and send me the test result. I thanked her for staying late and calling me (Lori was right and knew she would call), she said I would get a call on Monday about a neurosurgeon and we hung up. The next few hours were pretty much a blur.
I grabbed my copy of the report and jumped to the findings:
1.4 x 1.1 x 1.1 cm mass which I believe is arising from the inferior right lateral aspect of the sella turcica. It expands the floor of the sella turcica and protrudes into the right sphenoid sinus. This most likely is a pituitary tumor and given it's size would be considered a PITUITARY MACROADENOMA.Much less likely this could be arising from the sphenoid sinus tissue itself. To me it appears as though the floor of the sinus is being expanded infertile which would support an intrastellar origin.
Turns out it was exactly the opposite of what the person who read the MRI thought it was.
I google PITUITARY MACROADENOMA. and find out there are different types of these tumors. They fall into two categories, functioning and non-functioning. Without getting into a lot of "stuff" the difference between the two is the functioning ones secrete some type of hormone, non-functioning just sit there and grow. My initial research showed there are only a few treatment options and they vary depending on whether the tumor is functioning or non-functioning. The size of the tumor will help determine what to do as well. A non-functioning small tumor is something you may just monitor for growth and leave it alone. The other treatments are radiation, medicine, surgery or a combination of any of those.
As I said it was a long weekend. Lori was sick from our trip to Tim's (exposure to a pre-schooler... does it every time) and I was trying to catch up on work from being gone so it was a rough weekend to begin with. The thought of some type of surgery on my head (aka brain surgery) was almost consuming. We did our best to not think too much about the unknowns until we had a chance to talk to the neurosurgeon but it was hard.
Right on schedule Dr. P's office called with a name of a neurosurgeon. I called their office. The first available appointment is in January. "I can probably get you in in December but why don't you send me your reports. I'll review them with the Doctor and see if he can see you on Friday." [uh...OK]
[fax reports]
10 minutes later... ring ring - it's them already.
"Can you get a copy of the films and be here this afternoon around 3:30"
This actually made us even more nervous. We're thinking it's pretty serious, must be for them to get us in so fast. We went from January to December to "today". Now we had to get the actual films which typically they say they "need" 24-48 hours to prepare, and we need two tests from two locations.
Lori calls (she typically has better luck than I do with such things)
"Sorry Mrs Lyons but we can't get them that quick"
"But we just found out Friday at 5:00 My husband has a tumor in his head... We called the doctor and he needs us there today"
"We'll have them ready at 2:00"
Amazing how fast things happen when you have a tumor in your head. Fortunately we were too busy to dwell on anything but again, the urgency given the situation by those we were dealing with made both Lori and I even more worried. We arrived on time for our appointment. Then we waited. We finally headed back to the room (Lori and I typically go to the other's appointment) and waited some more. We've been to many doctor appointments over the years with Lori but this one ranks near the top on the anxiety scale. The nurse came in and did her thing then we waited some more.
Eventually a knock on the door (it probably wasn't as long as it seemed). A young lady came in. Turns out she was some assistant. She examines me including a peripheral vision test and basically tells us I don't need surgery and it should be OK if we just leave it and we could go. Or not I thought. How bout you let the doctor know we would like to talk to him I told her. About 10 minutes later some arrogant doctor comes in and comes close to berating us because we were even there. "She's right, you don't need surgery you need to see an endocrinologist. I looked at the films, you definitely have a pituitary tumor but it's not affecting you sight so we leave it. You shouldn't have come here till you saw the endocrinologist. If he thinks he can't do anything for you then we can remove it when you start going blind."
...
Lori and I were stunned. We just did what we were told to do. What an a$$. On the one hand we were relieved as we knew there was no surgery in the near future but wow, bedside manner much? We were freaked out. Would it have killed him to explain a bit more about what I had and what it meant? Guess so. We decided before we even left the office if I ever do need surgery he would not be the one doing it. Of course by the time we got out of there it was too late to call an endocrinologist. Tomorrows another day.
A couple of days later we went to see an endocrinologist. He informed us twice he has treated pituitary tumors before (not sure if he was trying to convince us he knew what he was doing or convince himself). He explained what I had and, depending on what type of tumor it was told us the treatment options. Everything he said matched the information I had found out on my own so that was good. He ordered a lot of blood tests and wanted to see us in two weeks.
Two weeks. So much for things happening quick. I was real busy with work so that helped. Sweeps period on TV so we had a lot of stuff recorded to watch at our convenience. That helped as well. Or at least seemed like a good idea. Then one night we stumbled across the episode of ER titled "Heal Thyself". It guest starred Anthony Edwards. ER fans remember him as Dr. Mark Greene - he died of a brain tumor. Yea... that helped
So, I get the phone call and Dr. P tells me I have a mass on my Pituitary gland. She really sounded concerned but assured me it wasn't life threatening or anything. Her opinion was it would have to be removed, if not now then sometime in the future. She confirmed my fax number and send me the test result. I thanked her for staying late and calling me (Lori was right and knew she would call), she said I would get a call on Monday about a neurosurgeon and we hung up. The next few hours were pretty much a blur.
I grabbed my copy of the report and jumped to the findings:
1.4 x 1.1 x 1.1 cm mass which I believe is arising from the inferior right lateral aspect of the sella turcica. It expands the floor of the sella turcica and protrudes into the right sphenoid sinus. This most likely is a pituitary tumor and given it's size would be considered a PITUITARY MACROADENOMA.Much less likely this could be arising from the sphenoid sinus tissue itself. To me it appears as though the floor of the sinus is being expanded infertile which would support an intrastellar origin.
Turns out it was exactly the opposite of what the person who read the MRI thought it was.
I google PITUITARY MACROADENOMA. and find out there are different types of these tumors. They fall into two categories, functioning and non-functioning. Without getting into a lot of "stuff" the difference between the two is the functioning ones secrete some type of hormone, non-functioning just sit there and grow. My initial research showed there are only a few treatment options and they vary depending on whether the tumor is functioning or non-functioning. The size of the tumor will help determine what to do as well. A non-functioning small tumor is something you may just monitor for growth and leave it alone. The other treatments are radiation, medicine, surgery or a combination of any of those.
As I said it was a long weekend. Lori was sick from our trip to Tim's (exposure to a pre-schooler... does it every time) and I was trying to catch up on work from being gone so it was a rough weekend to begin with. The thought of some type of surgery on my head (aka brain surgery) was almost consuming. We did our best to not think too much about the unknowns until we had a chance to talk to the neurosurgeon but it was hard.
Right on schedule Dr. P's office called with a name of a neurosurgeon. I called their office. The first available appointment is in January. "I can probably get you in in December but why don't you send me your reports. I'll review them with the Doctor and see if he can see you on Friday." [uh...OK]
[fax reports]
10 minutes later... ring ring - it's them already.
"Can you get a copy of the films and be here this afternoon around 3:30"
This actually made us even more nervous. We're thinking it's pretty serious, must be for them to get us in so fast. We went from January to December to "today". Now we had to get the actual films which typically they say they "need" 24-48 hours to prepare, and we need two tests from two locations.
Lori calls (she typically has better luck than I do with such things)
"Sorry Mrs Lyons but we can't get them that quick"
"But we just found out Friday at 5:00 My husband has a tumor in his head... We called the doctor and he needs us there today"
"We'll have them ready at 2:00"
Amazing how fast things happen when you have a tumor in your head. Fortunately we were too busy to dwell on anything but again, the urgency given the situation by those we were dealing with made both Lori and I even more worried. We arrived on time for our appointment. Then we waited. We finally headed back to the room (Lori and I typically go to the other's appointment) and waited some more. We've been to many doctor appointments over the years with Lori but this one ranks near the top on the anxiety scale. The nurse came in and did her thing then we waited some more.
Eventually a knock on the door (it probably wasn't as long as it seemed). A young lady came in. Turns out she was some assistant. She examines me including a peripheral vision test and basically tells us I don't need surgery and it should be OK if we just leave it and we could go. Or not I thought. How bout you let the doctor know we would like to talk to him I told her. About 10 minutes later some arrogant doctor comes in and comes close to berating us because we were even there. "She's right, you don't need surgery you need to see an endocrinologist. I looked at the films, you definitely have a pituitary tumor but it's not affecting you sight so we leave it. You shouldn't have come here till you saw the endocrinologist. If he thinks he can't do anything for you then we can remove it when you start going blind."
...
Lori and I were stunned. We just did what we were told to do. What an a$$. On the one hand we were relieved as we knew there was no surgery in the near future but wow, bedside manner much? We were freaked out. Would it have killed him to explain a bit more about what I had and what it meant? Guess so. We decided before we even left the office if I ever do need surgery he would not be the one doing it. Of course by the time we got out of there it was too late to call an endocrinologist. Tomorrows another day.
A couple of days later we went to see an endocrinologist. He informed us twice he has treated pituitary tumors before (not sure if he was trying to convince us he knew what he was doing or convince himself). He explained what I had and, depending on what type of tumor it was told us the treatment options. Everything he said matched the information I had found out on my own so that was good. He ordered a lot of blood tests and wanted to see us in two weeks.
Two weeks. So much for things happening quick. I was real busy with work so that helped. Sweeps period on TV so we had a lot of stuff recorded to watch at our convenience. That helped as well. Or at least seemed like a good idea. Then one night we stumbled across the episode of ER titled "Heal Thyself". It guest starred Anthony Edwards. ER fans remember him as Dr. Mark Greene - he died of a brain tumor. Yea... that helped
Monday, March 30, 2009
From the Top
I'm sitting at my computer one day near the end of September. Just another day where I'm working and the people who have "normal" jobs are doing whatever those people do on weekends when they aren't working. I begin to smell something. Smells like smoke but very faint. Not like something is burning though, I don't jump p and see if there is a pot burning on the stove or anything. Fact is, I just go about my business and keep working.
After a while I still smell it. It seems to be stronger. I grab the front of my shirt and pull it up to my nose... [SNIFF SNIFF] Nope, not the shirt. I start sniffing around my computer. It does run hot sometimes (3 monitors will do that). Not the source of the smell though. Must be something outside. Back to it.
More time passes, Mike walks by the office door. "Hey Mike, com'mere a minute". "Whats' up" he asks. " You smell smoke" I inquired. [sniff sniff sniff] "I got nothin' " he says. Weird.
A bit later Lori walks by and I call her in too. She can't smell anything. I tell her it's like I was sitting around a campfire and the smoke smell got in my clothes (anyone who has gone camping knows just what I'm talking about). She didn't smell anything. OK... I'm officially loosing it.
So days go by. The smoke smell is constant. No big deal I tell myself. I've already gotten to the point where I don't even notice it anymore (much). Life moves on. WAY too much work to do to worry about some phantom smoke smell.
Yes, I worked WAY to much. So much in fact I literally worked until my mouse arm locked up at the elbow. Fortunately for me it locked up in "working position" since I had a deadline I was pushing to meet. I made the deadline (after one of those crazy 30+ hour long shifts) and my elbow is fried. That night I can't even sleep. The pain is so sharp I was literally sitting on the couch at 3 in the morning ion tears. Obviously next day I'm off to the doctor.
Hi Doc, been overdoin it again. I can't move my arm. OK, you need to go see blah blah... anything else? Lori leans over and half whispers "tell her about the smoke" "Oh yeah... I have the strange sensation of smelling smoke. All the time" Let's get an MRI she says. October 7th I head to a place with an extra large MRI machine to get my head examined. A couple of days later I head out of town for just over 2 weeks. Sure would have been nice to have received the results before we left but what'cha gonna do. I'll just check the phone messages. My doctor is very good about getting Lori and I our test results. She know by now we keep meticulous records and need copies of everything.
Guess I just missed the call when we left. !st thing Monday morning I call the doctor and get the news. "Dr. Peditto would like for you to get a spiral CT scan of the brain, there was something unidentified on the MRI report" "uh.... OK" "I can fax you your copy if you wish" "uh... sure... I'm actually out of town for another 2 weeks, can the CT scan wait till I get back?" "hold on, let me check" "[...]" "Dr. P says yes, it can wait" [I finally begin to breathe again] "OK, you're faxing me the report?" "yes"
[quick plug - trustfax's online fax service is great - cheaper than a phone line and access to it from anywhere]
I've read enough of these test reports to know you don't read all the blah blah at the top - you go right to the area of the report that says "Impression". Here's what I found:
1 Mild maxillary sinus disease. No acute sinusitis is noted [OK - so far so good]
2. Soft tissue involving the roof of the sphenoid sinus on the right side. It is contiguous with the pituitary gland and it is difficult to say whether this is sphenoid sinus disease which is felt to be more likely, or a pituitary mass which is felt to be less likely. This section of direct coronal CT images to evaluate the integrity of the floor of the sella may be of benefit
OK, whatever that means that would be why she wants me to have the CT scan. Guess we'll just have to wait to see. At least it's seems to be some kind of sinus disease (AKA infection). Being the sphenoid sinus it may take a while to get rid of (from what I read) but at least it can be treated. That will probably mean the smoke smell will be gone as well. All is good.
Flash forward 2 weeks plus.
I did my CT scan on Wednesday 10/29/08. Friday comes around. I really want to know the results before the weekend. I look the the time on the lower right had corner of my monitor - 2:00 - still got time I think to myself. Look again - it's after 3:00 and not looking good. Crap - 4:00 and still nothing. "Guess we won't hear before the weekend" I tell Lori. "Dr. Peditto wouldn't do that to us" Lori says. "It's Friday evening, after 4:00, Halloween and she has kids (not little ones but still) it will be Monday, I'm sure she's gone home."
I grumbled something under my breath about wishing I was 'going home for Halloween and the weekend' and went back to working. 45 minutes later the phone rang. "Hello Mr. Lyons... it's Dr. Peditto. You have a mass growing on your pituitary gland and need to see a neurosurgeon right away. Nancie will call you with an appointment time on Monday morning" I would have been better off if the phone call had waited till after the weekend.
After a while I still smell it. It seems to be stronger. I grab the front of my shirt and pull it up to my nose... [SNIFF SNIFF] Nope, not the shirt. I start sniffing around my computer. It does run hot sometimes (3 monitors will do that). Not the source of the smell though. Must be something outside. Back to it.
More time passes, Mike walks by the office door. "Hey Mike, com'mere a minute". "Whats' up" he asks. " You smell smoke" I inquired. [sniff sniff sniff] "I got nothin' " he says. Weird.
A bit later Lori walks by and I call her in too. She can't smell anything. I tell her it's like I was sitting around a campfire and the smoke smell got in my clothes (anyone who has gone camping knows just what I'm talking about). She didn't smell anything. OK... I'm officially loosing it.
So days go by. The smoke smell is constant. No big deal I tell myself. I've already gotten to the point where I don't even notice it anymore (much). Life moves on. WAY too much work to do to worry about some phantom smoke smell.
Yes, I worked WAY to much. So much in fact I literally worked until my mouse arm locked up at the elbow. Fortunately for me it locked up in "working position" since I had a deadline I was pushing to meet. I made the deadline (after one of those crazy 30+ hour long shifts) and my elbow is fried. That night I can't even sleep. The pain is so sharp I was literally sitting on the couch at 3 in the morning ion tears. Obviously next day I'm off to the doctor.
Hi Doc, been overdoin it again. I can't move my arm. OK, you need to go see blah blah... anything else? Lori leans over and half whispers "tell her about the smoke" "Oh yeah... I have the strange sensation of smelling smoke. All the time" Let's get an MRI she says. October 7th I head to a place with an extra large MRI machine to get my head examined. A couple of days later I head out of town for just over 2 weeks. Sure would have been nice to have received the results before we left but what'cha gonna do. I'll just check the phone messages. My doctor is very good about getting Lori and I our test results. She know by now we keep meticulous records and need copies of everything.
Guess I just missed the call when we left. !st thing Monday morning I call the doctor and get the news. "Dr. Peditto would like for you to get a spiral CT scan of the brain, there was something unidentified on the MRI report" "uh.... OK" "I can fax you your copy if you wish" "uh... sure... I'm actually out of town for another 2 weeks, can the CT scan wait till I get back?" "hold on, let me check" "[...]" "Dr. P says yes, it can wait" [I finally begin to breathe again] "OK, you're faxing me the report?" "yes"
[quick plug - trustfax's online fax service is great - cheaper than a phone line and access to it from anywhere]
I've read enough of these test reports to know you don't read all the blah blah at the top - you go right to the area of the report that says "Impression". Here's what I found:
1 Mild maxillary sinus disease. No acute sinusitis is noted [OK - so far so good]
2. Soft tissue involving the roof of the sphenoid sinus on the right side. It is contiguous with the pituitary gland and it is difficult to say whether this is sphenoid sinus disease which is felt to be more likely, or a pituitary mass which is felt to be less likely. This section of direct coronal CT images to evaluate the integrity of the floor of the sella may be of benefit
OK, whatever that means that would be why she wants me to have the CT scan. Guess we'll just have to wait to see. At least it's seems to be some kind of sinus disease (AKA infection). Being the sphenoid sinus it may take a while to get rid of (from what I read) but at least it can be treated. That will probably mean the smoke smell will be gone as well. All is good.
Flash forward 2 weeks plus.
I did my CT scan on Wednesday 10/29/08. Friday comes around. I really want to know the results before the weekend. I look the the time on the lower right had corner of my monitor - 2:00 - still got time I think to myself. Look again - it's after 3:00 and not looking good. Crap - 4:00 and still nothing. "Guess we won't hear before the weekend" I tell Lori. "Dr. Peditto wouldn't do that to us" Lori says. "It's Friday evening, after 4:00, Halloween and she has kids (not little ones but still) it will be Monday, I'm sure she's gone home."
I grumbled something under my breath about wishing I was 'going home for Halloween and the weekend' and went back to working. 45 minutes later the phone rang. "Hello Mr. Lyons... it's Dr. Peditto. You have a mass growing on your pituitary gland and need to see a neurosurgeon right away. Nancie will call you with an appointment time on Monday morning" I would have been better off if the phone call had waited till after the weekend.
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