Second trip to the EN&T doctor

I went to the EN&T doctor to have my nose cleaned again.  Now the last time I had this done, I likened the experience to having a bus taken out of my nostril. I was not expecting this trip to be so eventful, but it appears I am not quite done healing up yet, and there is still a lot of blood crusting in my nose, so yesterday was quite a lot of pain again, as more double-decker buses were removed from my nose. I see him in another 2 weeks.

oops left the staples

So I was talking to the Neurology office, asking them about my next appointment, and wondering when I was going to get the staples out of my back.  I think I explained earlier that staples were put into my lumbar area, to close up the lumbar puncture they did for my brain surgery.

The PA (Physicians Assistant) was mortified that the staples were not removed yet, they should have been removed two weeks after surgery. They made an appointment for the next day.

I went yesterday to my Neurosurgeon's office and they removed the staples. Now when they put in the staples, I felt it, and it was not very comfortable. However, taking them out (and there were four plus a suture) I only felt two staples, the other ones came out just fine.  So if you have staples, start asking when they are coming out by week two.

Do what the man says

Just a little postette -

I suppose the freedom of breathing kinda went to my head.  My EN&T doctor told me "Now Thom, take it easy, you are still not all the way recovered."

I guess that take it easy does not mean go home and try to clean the kitchen. Now my lumbar puncture is throbbing (which has never happened before) and my head feels like it is going to explode.  But on the bright side, I made Cherry Chip cupcakes by Betty Crocker.

Thursday - the big suck!

So this morning I went to my Ear Nose and Throat doctor, to have him clean out my nose.  I was warned by him before surgery that he was going to see me a couple of weeks after my surgery to clean out my nose. 

I have had draining in the back of my throat, and sometimes it feels like I am drowning.  When this happens (usually at night when I am going to bed) I stack up pillows, and even though I am sleeping in an almost sitting position, I don't feel like I am drowning in my own mucus.

I checked in with my doctor, and he explained what he was going to do. He told me this was the worst thing since surgery, because he was going to take his scope up my nose, and vacuum out all of the dried blood, packing and mucus in my nose.  About an hour before I had a mini coughing fit, and some mucus came up, so I was once again worried that the "Fat Patch" might come loose.

The first thing the doctor did, was he sprayed some numbing agent in my nose, then he told me this was going to be very uncomfortable, and if I wanted him to stop, he would.  He stuck both the vacuum and the endoscope up my nose, and started suctioning. I could feel him inside all the sinus cavities, and by the sound of the vacuum he was getting a lot of matter.

He kept apologizing for the discomfort, and asked if I wanted him to stop. I felt if I did have him stop, it would only prolong the agony, so I soldiered ahead.

He then took out some forceps and told me this was really going to be uncomfortable, because he found a "crusty" and it needed to be removed.  My eye on the right side was watering profusely (he was in the right nostril), and he started pulling.  It felt like he was pulling a bus through my nose, and then he totally extracted the "crusty." I am sorry if this is too graphic, but it was about an inch long, and about as big around as a fountain pen: It was crusted blood and solid.

Then he did the same thing on the left side, and extracted another "crusty" about the same size from that side.

Before the doctor did all of this, I had a severe headache behind and to the left of my right eye. After he was done, the pain went away. Now I can smell things, and not that awful smell from earlier this week.  The doctor said sometimes something can invade our sinuses, and we just have to do the best we can.

I will be back with the doctor for another cleaning in a couple of weeks. We will see how things go, about a month before surgery, my wife and I made dinner reservations and paid for the meal for our Anniversary which is coming up this Saturday. I am hopeful that I will be able to taste the meal, and not have just sweet and salty as my taste sensations.

I did ask the doctor about the "fat patch" and if it was still intact, he said it was doing just fine. I told him it worried me, and he said it was something that they are always concerned about as well. I am very glad my "fat patch" is still intact.

First couple of weeks after surgery

So my first couple of weeks are now over, and they have not been the best of times. So let me take you back to my first Monday after being released from the hospital.  Literally I could not do anything; I laid in bed for the first week, I finished a couple of books, and slept a lot. my head still hurt, and I had to use suppositories for myself to become regular. I cannot taste anything except for salty and sweet. I find this the most disturbing, because I love the flavor of my wife's cooking, but now all I taste is these two ingredients.

By Friday, I had managed to get out of bed for most of the day.  I took to using a walking stick to make it around the house, because I do get dizzy really easy. On Saturday I really wanted to get out of the house, and even though my wife thought it was a bad idea, I went anyway: Just down the street to pick my daughter up from work.

Saturday marked the first day with out sleep, but I also have not needed any pain medication. I have just been dizzy.

On Sunday we had a little further excursion, and even went so far as to go shopping, but I became very dizzy, and so I sat a lot, and used my walking stick to steady myself.

The beginning of this week, I have been up and out of bed all day. I do just sit a lot, but I have projects I can do while sitting and it keeps my mind busy. On Monday night I had a really bad smell hit my sinuses, I should have been happy, because I could smell something. But this smell was a sickly sweet perfume smell, and it invaded my taste and my nose. I tried to smell coffee, it smelled like the perfume, I even resorted to a spoonful of vinegar to get rid of the taste, that vinegar tasted like an astringent plus the perfume.

I got a really bad headache Monday night, and took what the hospital sent home with me; the first pain pill I have had since Saturday, but I slept.

Wednesday I woke up without a headache and without that awful smell. I had  pretty uneventful day but I had a headache for most of it.  I know I could take the pills, but they are running low, and if I need them in the future, I want them to be there.  However I took one more on Wednesday night and slept all night long.

Going home day - Sunday

I know why I don't like hospitals, they tell you to get rest, and then they wake you every two hours to give you something to sleep. Go figure.

I woke up on Sunday morning, the night before I had my catheter removed, to kinda get me ready for checkout, but I was still feeling kinda yucky. I have no sense of smell since the surgery, so I could not tell if I stunk or not, but considering the nurses were reluctant to visit my room, I figured I must smell quite awful.

My wife will never tell me I stink, unless I have been manning a campfire, then she has no qualms with expressing my odorous nature, but in the hospital room, she would sit there and hold my hand.

In short, I had to take a shower. My neck still hurt, and my head was pounding, but I figured a shower, some clean underwear and a clean gown would make me feel like a new penny, and after the cleaning exercise, I was correct. I really enjoyed the bathing. The hot water even felt good on my neck.

I took a cruise around the floor with my wife, and felt a little unsteady, even dizzy at times, but I felt than was probably normal; plus in the "Once You Return Home" section of the discharge paperwork, it does not say anything about being dizzy.In fact the list is this:

• Difficulty breathing or unusual shortness of breath
• Chest pain
• Excessive bleeding or drainage at the operative site - hum the bloody nose from Saturday, interesting.
• Persistent nausea or vomiting - key word here is persistent
• Fever, chills, and /or increased pain that is not relieved by pain medication.

So the dizziness must be - at least by the indications of this list - kinda normal. So I went with it.

My wife had to leave, and I started checking out procedures. It took about an hour, and I was checked out of the hospital: Vowing I would never return (I should really stop doing that, since in one year I have been there five times for different reasons.)

We got to the car, and about a mile from the hospital, I started vomiting. I am glad her and the kids had Taco Bell the night before, and my youngest son disregarded his mother's instructions to clean out the car. I lost all my breakfast and lunch in the seven miles to the house, and mixed it with the remnants from the families previous excursion. Not fun but I was home.

I came inside and I went to bed.

Three days after surgery - Saturday

Saturday marked my last day in ICU. I was happy and excited.  The problem with happiness and excitement is: They fade, and sometimes as fast as a drop of water on a summer sidewalk in Phoenix Arizona.

I ate a good breakfast, and the guy came into take my lumbar drain out. Now this is also something they don't share in the vacation literature. The drain comes out, but they have to seal it up.

So they had me roll over on my side, and I felt the drain come out of my spine. That was a little uncomfortable, then the guy said, "OK, now I am going to staple you shut."

"What the...!!!"

I felt the first staple go in and I heard the ca-chunk. then the second staple. I could only imaging what it looked like. I was being sealed like a bag before being shipped on a FedEx truck. Ca-chunk! Ca-chunk!

It felt like he put in five staples, but the ICU nurse told my wife it was only two. Now I had to lay on my back for nine hours without moving, to make sure the patch worked. I did just that.

I was again disoriented, the pain in my lower back, now matched my head, neck and shoulders. I was not going to go through that again.  So when the lady came in to take my blood, I told her she couldn't, because I thought she wanted me to sit up. My wife was in the room, and apparently I was not making any sense. After my wife explained why she was doing this, I let her. It's alright, she exacted her revenge. She took out one of the needles, and pressed hard enough to leave a bruise on my arm.

I ate laying down, and then the doctor came in, told me that I would be going home on the next day. Home, I wanted to go home, to get out of the hospital, and if I could go home on Sunday, than my wife would not have to take another day off work.

I still had not had a BM, but my wife and the nurses said for me not to worry.

That evening after my wife and children went home, about 7:30, I was sitting up in my chair, and a gargantuan pain came over my head, it felt like one of J.R.R Token's Orks was squishing my head between his hands, just to put my brain jelly on his toast.  I bent forward to try to relieve the pain, and my nose started bleeding. The last time I had a bloody nose I was in the ninth grade, and even though I just had brain surgery, I did not know if this was important.

I rang the nurse. "Just one moment," she said.

Ten minutes past, my nose still bleeding, putting my head back, only cause my head to ache more, and my ears to ring, so I was kinda stuck.

I rang again. "I said just a moment,"

Which I retorted. "A moment is at most sixty seconds, I rang 10 minutes ago."

"We will be there as soon as we can."

So I started yelling into the hall, and a doctor (not mine) came into the room, helped me to my bed, and got my nurse. I was ready to go home. Even with my wife working away from home, I would understand 10 minutes to get to me.

Two days after Surgery - Friday

I woke up Friday, and I was ready to tackle the world.  Remember when tackling such a large adversary, you might get crushed.

Now let me explain my room.  When ever you see a "Cold War" film about hospitals in Communist Russia, they are dark, grey and there is nothing about the room that is inviting. I was transported back to the early 80's and put in a Russian hospital room. The room was a dark gray, my bed sat in the center of the room, and out the window was a wall. very little light came in, and there were devices to assist the medical professionals with the care and recovery of their patients, but they looked like primitive torture devices. I was hooked up to all sorts of machines, and my blood pressure was being checked every hour, and every two hours I was being checked to see if I was stroking out.

I felt pretty good, I slept most of the night, and my pain was manageable.  I was asked if I wanted to sit up and eat breakfast.

I ordered a breakfast, and the nurse told me my eyes would be bigger than my stomach, but I through caution to the wind, and ordered a breakfast burrito, banana and some tea. I took two bites of that food, and I threw up. (I failed to mention that I threw up when  I woke up in ICU on the first day, and my wife got upset, because I was still in those clothes I threw up in. Yuck!).

So food was now out, I was not a happy camper, because I love food. Now my body would not allow me to eat food, and I had not had a BM since I had been there. My wife told me to stop stressing, and I just laid there all that morning.

The doctor came and visited me, told me that the next day I would have the lumbar drain taken out, and I would be able to go to a regular hospital room. I was excited. No more "Cold War" Russian hospital room, I could move up to real luxury.

The nurse came in and I ordered lunch, a little less than I had for breakfast, and it stayed down. Dinner was the same way. They let me sleep pretty much all night, with out a light, but the nurse would come in and unintentionally wake me almost every hour on the hour.

.

Day after Surgery - Thursday

I woke up Thursday Morning still in ICU, I could not talk over a whisper, and my head felt like Alien and Predator were having a reunion inside my scull.

I had a stopped up feeling inside my nose, and I was still very tired. I noticed a needle was in my right wrist, and two needles were in my left hand. I also had a catheter and my lower back hurt.  My neck still hurt, and nobody could even give me an explanation as to why.

The doctors used a halo device to keep my head still during surgery, and because of my previous accident, the maneuvering of my neck caused the pain. I had scabs in my hair where the screws were put to keep my head still while the doctor was taking out my tumor. Even though this was not their explanation, it is the only thing that really makes sense.

My blood pressure went from 158/90 to 123/65 almost instantly, which I knew would happen. When I met with the endocrinologist, she said my saline levels were not spiking, and I seemed to be doing well.

They did do a lumbar drain, which they have to do to take off a certain level of spinal fluid, until I started to absorb again naturally. when they lowered the bag that held the fluid, my headache and neck pain went away, when they raised it, the headache and neck pain would increase. So they kept the bag lower than it was suppose to be, but that was alright, I don't like pain.

My wife sat patiently in a chair reading, while I drifted in and out of consciousness. I was woke every two hours to take medications, and to meet new medical professionals when their shift started.

Thursday night I was taken off liquid diet and moved to real food without restriction. That is good, because I really did not like the liquid stuff.

One quick thing. If you are afraid of getting hooked on drugs, don't! I was afraid, and still a little afraid now, but what I was told was, "Let's worry about your pain now, and if we have to do something later on, we can do it then." I was refusing pain meds, and causing myself to have more pain then I needed. After I was told that, I started to increase my pain meds, and then I felt much better.

They also had these leg massage devices on my calves, great little things, always massaging my legs, I wish I had those all the time.

A week ago today - Day of Surgery

Well I had my surgery a week ago today, and I feel like crap!!! OK, maybe not quite that bad, but I don't feel as spry as I did before surgery.  What was I expecting, I would come out of surgery dancing and singing. If you have those aspirations, let them go now.

So I am going to take you through this last week, and the things they did not tell me that were going to happen, and what I did and did not expect.

Day of Surgery.

I was scheduled to be at the hospital at 5:30 am, and so I packed a bag (like a dork) and went to check in like I was about to stay at the Hilton. I showed up at the check in counter, and got all my information processed, and then my wife, daughter and I went and sat down: Waiting for the nurse to come get me.

We were escorted back to the pre-op room, which was the size of a small walk-in closet, so don't do what I did, surgery is not a family gathering, just bring one family member, or at least leave everyone else in the waiting room. My poor daughter was standing in the corner for two hours, and she was not even in timeout.

I met with the anesthesiologist first, he told me they were going to put a breathing tube down my throat, and I might have that still in when I was in ICU.  I was not looking forward to that. I did not know how I would react to a breathing tube down my throat, but it does stand to reason that a breathing tube would need to be done, since the insertion point is through the nasal cavity. To say I was not looking forward to this procedure of the breathing tube is an understatement, it quite frankly freaked me out. The anesthesiologist reassured me, and he left.

Then I met with the Ear Nose and Throat doctor, and he let me know that he was there, and he would be taking care of me.  They also noticed multiple tumors inside my nasal cavity, and he said he would also be removing those.

Then I met with my Neurologist, he told my wife he was going to take about 5 hours to do the procedure, and he would come and get her when it was done.  The nurse also came in and told my wife that she would call when the procedure started, and when it was completed.

I got in my gown, and I was wheeled down to the operating room by this time 2 hours had already passed. So this is not the express lane, but more like Hannibal taking the elephants over the alps... OK not quite that bad, but it did seem to take a while for them to get their feet under them.

I was rolled into the OR, and introduced to three other nurses, transferred over to a bed, I looked up at the oversize light, talked to the anesthesiologist and was given a shot.

Goodnight.

I woke up extremely tired. my face felt like somebody stomped on it with a boot, my neck hurt, my ankle hurt and I was real dizzy.

I had something taped to my nose, and I was disoriented to say the least.

I looked over and saw my wife, she was crying, my daughters and son were crying, and I could not understand why. Apparently I was so swollen and bruised they could not hardly recognize me. I asked my wife to take a picture, but she refused. I looked up at the clock, it was about 1:30. The nurse told me I was in the ICU, and the surgery went well. She asked how I felt, and wanted me to do tests almost immediately.

She had me squeeze her fingers, touch my nose and then her finger, hold out me hands stick out my tongue (which at the time I felt silly, but was not able to really laugh) and then press my feet against her hands. Because my ankle hurt, I did not press too hard with that foot, and the doctor was brought in. He had me press again, I was trying to tell them my ankle hurt, but they were not understanding me. I did not have the breathing tube down my throat, but my throat felt like someone pored sand in my mouth and I washed it down with grapefruit juice.

I was in and out of consciousness until about midnight, when I started being aware of my surroundings. My ankle still hurt, so I started rotating it clockwise and then counterclockwise, I did this for about an hour, and the pain finally started to fade. My neck hurt, almost as bad as when I had my accident (another post, bike accident which led to the discovery of the adenoma).

I tried to massage my neck but it did not help. I also tried some of the exercises that the physical therapist told me to do, but the pain would not go away. I was given some pain meds and I went back to sleep.

Mapping

Today is T-1day and counting.  I probably won't write again until after my surgery, so I will tell you about what is happening today. Today I am going into radiology to have my brain mapped. The Doctor said it is like getting a GPS for my brain, so he knows where to go, and how he should proceed to take the tumor out of my head.

If you are going through this, it is very important to have people around you that are strong.  I have people ask me all the time, "Thom, are you scared?"

Honestly I am not. The reasons are because my faith and trust in Jesus Christ my savior.  He knows what is going to happen even before it does, and this tumor did not take him by surprise.  My second is my wife. she has been a rock, even though I know this tumor bothers her. She is strong and courageous, and I love her with all my heart.

So I am about to take off to radiology, sit in a tube and listen to them beat the drums around my head. Remember if you are going through this, leave your jewelery at home.

See you on the other side.

T -2Days and Counting

Today is Monday, 4/8/2013

Today is my last day of work, before I go into Surgery. I am not scared because Jesus said God is watching over me.

Now the Pituitary governs the release of hormones, and my hormones are unbalanced. So the doctor has prescribed Hydrocortisone pills, and Levothyroxine. My testosterone is also low, but she wanted to see if the surgery will bring that back to normal.

My head aches a lot now, and my blood pressure is high, but this can also be attributed to the tumor. I am irritable and I do have a lower sex drive.

In the next several weeks stay tuned, I will be documenting more of my adventure with this removal of the Pituitary Adenoma

Tumor

Back in February I was in a bike accident, my accident only gave me soft tissue injuries, but it brought to light another problem. I had to go to the Emergency Room a second time, and they did a full MRI. This MRI showed I had a brain tumor.

This brain tumor sits on my Pituitary Gland, now I did not know I had this tumor, and asking my neurologist how I got the tumor, he told me it was just bad luck. Well I never won the lottery, so I suppose that makes sense.

So since the news was delivered to me about my Adenoma, I have done a lot of study of this tumor, but what I have not found, is what happens during surgery and just afterward. This is what this blog is for. I am going to basically journal my experience.  Now when I am in the hospital, I do not know what my ability will be for sitting down at my computer and doing this is, but I will do the best I can.  Today is only two days away from surgery.