Melissa and I have been home for a week now. During that time I have cleaned our bedroom, reorganized the hallway closet, finished unpacking our trip paraphernalia (not putting it away, mind you... just unpacked it. Most of it now sits in a basket waiting to be put away), and been of occasional use to the guys at work (I had to check in and make myself useful so they wouldn't forget about me).
I have reduced my pain management issues to something that can easily be controlled at the drop of a pill. My body feels good from my lower jaw to my toes. I am going to need to start exercising to some extent soon or I am going to lose this litlle pot belly I have been working so hard to maintain. It might turn into a full blown GUT. From my upper jaw, UP, however, things are still a bit dicey.
The swelling has gone down considerably on both sides of my head. My temple areas still have pads of swelling on both sides that increase when I sleep and decrease during the day. Ice packs still help the burning pain along my incision and the throbbing from the swelling. But there are fairly wide areas on both sides of my head that are numb. The borders of these numb areas are surrounded by an edge of tissues that tingles like a foot waking up from sleep. This leaves the center of my forehead, from the bridge of my nose to my incision line at the crown of my head, feeling normal, except when I put pressure on it. Then I can feel what I can only assume are bones popping in and out of place. So I try not to put pressure on it. EVER!
Here's one thing that may be nothing at all and totally unrelated, but I feel the need to mention it anyway. I have a dull, bruisy kind of pain when I push on my face just above the flare in my left nostril. The pain doesn't appear to be IN my left nostril, but behind it somewhere, like back in the sinus. It almost feels as if I have a sinus infection, but it remains localized and has not gotten better or worse in the last few days. And I have been on a LOT of antibiotics recently. I will monitor it and check with my PCP if it becomes an issue.
My jaw is still restricted in how much it can open. I can put a spoon with soup in there, but I cannot fit a ham sandwich in there without squishing it flat. When I try to do stretching exercises, it causes some EXTREME uncomfortableness on my left side jaw muscles. It almost feels like there will be a structural failure back there. So I try to do only gentle exercises. How is the dentist going to get in there if I can't restore my big mouth?
My left eye, which had the roof of its home removed and remodeled, does not feel normal. While there is still some swelling there and I can assume this accounts for some of it, the eyelid still does not open all the way, giving that side a "droopy" appearance. The lower lid always feels as if there is some kind of grit stuck in there on the outer edge, under the eyeball. When I wake up in the morning, it is fairly uncomfortable and a film has built up over the eye so I cannot see anything but blur. After I rinse it out with Visine Tears, the blurriness goes away and the ache disappears, but I can't help but wonder if it is not drying out at night. I may have to go see an eye doctor to monitor this issue.
I think that is my major list of complaints to date. Overall, not too shabby for the surgery I had. I still have to send my surgeons a Thank You card for preserving my eyesight, my innate good looks, my sense of smell and for giving me a scar that I can show off (seriously, though, even THAT is going away).
My next few posts are going to concern themselves with insurance cost and coverage. Not all of the claims are in, so it is a work very much still in progress.
Sunday, January 31, 2010
Friday, January 29, 2010
Pain Management Update
I went to see my PCP on Wednesday, Jan 27th. She gave me a cursory exam, noted my post-surgical condition and forwarded me on to a pain management specialist. I go the appointment for the next day.
I received a call from the PMS office Thursday morning confirming the appointment and asked me to download an 8 page questionnaire regarding my pain management history for my current pain issue. It was VERY detailed and I ended up using about 10 pages (some pages required I print out more than one and I kept adding drugs I had been given in the hospital to little or no effect).
I saw the doctor at about 2:00 and he and I discussed the surgery, discharge meds, type of pain I was having, etc. After the discussion was over, he noted that he was not impressed with the hospital's pain management process. He prescribed 2 drugs for me to take.
Because I am having muscle tissue aches, bone aches, swelling and pressure pain, he prescribed oxycodone as an alternative to the medications I had been given that DIDN'T work.
Because I am having burning pain along my incision and stabbing and shooting pains in my forehead and temple, as well as numbness, tingling and bizarre pins and needles, he prescribed Neurontin as well.
I have used the oxycodone (I got home and took 2 at about 4:30). I discovered that 2 is about 1 too many and I got really dizzy. But the pain went away. I ate a sandwich and the nausea resolved itself and the dizziness died down a bit. And the pain went away. I lay down for a bit and, much to my surprise, the pain went away.
Into the evening my pain stayed away until about 10:45 p.m. I took another one at 11 p.m. and was able to fall asleep unaided by anything else. I got 7 hours of sleep interrupted by my cats (to feed them) once during the night, when I took another pain pill, and I awoke with very little headache, though I still had my normal amount of swelling. I am now in the middle of my day and I have not had another pain pill since about 4 this morning. To summarize, I would call this a pain management success.
I have not started my Neurontin yet. The drug makes me nervous because it is a long-term drug. You don't take it as needed. You have to titrate up to a certain level, then titrate back down when you want off it. I'm not sure my burning, stabbing, shooting pains are bad enough to warrant such a long-term drug. We'll see.
Does anyone else have any experience with Neurontin? Let me know.
Again, I'm glad I went to go see a doctor. Just knowing I HAVE pain meds that work make me feel a bunch better.
I received a call from the PMS office Thursday morning confirming the appointment and asked me to download an 8 page questionnaire regarding my pain management history for my current pain issue. It was VERY detailed and I ended up using about 10 pages (some pages required I print out more than one and I kept adding drugs I had been given in the hospital to little or no effect).
I saw the doctor at about 2:00 and he and I discussed the surgery, discharge meds, type of pain I was having, etc. After the discussion was over, he noted that he was not impressed with the hospital's pain management process. He prescribed 2 drugs for me to take.
Because I am having muscle tissue aches, bone aches, swelling and pressure pain, he prescribed oxycodone as an alternative to the medications I had been given that DIDN'T work.
Because I am having burning pain along my incision and stabbing and shooting pains in my forehead and temple, as well as numbness, tingling and bizarre pins and needles, he prescribed Neurontin as well.
I have used the oxycodone (I got home and took 2 at about 4:30). I discovered that 2 is about 1 too many and I got really dizzy. But the pain went away. I ate a sandwich and the nausea resolved itself and the dizziness died down a bit. And the pain went away. I lay down for a bit and, much to my surprise, the pain went away.
Into the evening my pain stayed away until about 10:45 p.m. I took another one at 11 p.m. and was able to fall asleep unaided by anything else. I got 7 hours of sleep interrupted by my cats (to feed them) once during the night, when I took another pain pill, and I awoke with very little headache, though I still had my normal amount of swelling. I am now in the middle of my day and I have not had another pain pill since about 4 this morning. To summarize, I would call this a pain management success.
I have not started my Neurontin yet. The drug makes me nervous because it is a long-term drug. You don't take it as needed. You have to titrate up to a certain level, then titrate back down when you want off it. I'm not sure my burning, stabbing, shooting pains are bad enough to warrant such a long-term drug. We'll see.
Does anyone else have any experience with Neurontin? Let me know.
Again, I'm glad I went to go see a doctor. Just knowing I HAVE pain meds that work make me feel a bunch better.
Wednesday, January 27, 2010
PCP Visit Today
I have an appointment with my Primary Care Physician this afternoon. I felt compelled to make it as I do not like the idea that no one in Kansas City is aware of my medical status. I, at least, want my PCP aware of my post-surgical state should I end up in ER at some point in the future.
I am also going to discuss pain management. I have not had any pain meds since well before leaving the hospital. While this got them to stop giving me the wrong stuff, it did not address my pain issues. And I am worn out.
I get very little sleep at night and what I do get comes in 2-3 hour sections with bouts of being awake. Being awake in the middle of the night with nothing stronger than Advil on my side is not a great place to be. I have Valium to take for my anxiety about the pain, but honestly, I can't bring myself to use it regularly. However, the more tired I get, the less able I am to hold the anxiety at bay, the more I want to use the Valium to control the pain, which it DOESN'T.
I am in need of pain management that provides temporary relief from nightly pain that allow me to sleep undisturbed for longer stretches than I am getting now. I plan on advocating for just that this afternoon. I'd have gone in sooner, but this was the soonest they could get me in.
I will post the results of this appointment later.
I am also going to discuss pain management. I have not had any pain meds since well before leaving the hospital. While this got them to stop giving me the wrong stuff, it did not address my pain issues. And I am worn out.
I get very little sleep at night and what I do get comes in 2-3 hour sections with bouts of being awake. Being awake in the middle of the night with nothing stronger than Advil on my side is not a great place to be. I have Valium to take for my anxiety about the pain, but honestly, I can't bring myself to use it regularly. However, the more tired I get, the less able I am to hold the anxiety at bay, the more I want to use the Valium to control the pain, which it DOESN'T.
I am in need of pain management that provides temporary relief from nightly pain that allow me to sleep undisturbed for longer stretches than I am getting now. I plan on advocating for just that this afternoon. I'd have gone in sooner, but this was the soonest they could get me in.
I will post the results of this appointment later.
Sunday, January 24, 2010
You CAN Go Home Again.
Melissa and I are safely home. I love it. She loves it. We are home.
I have been giving a lot of thought about this blog. I put up a new poll to ask how long I should keep it up, but I think I may keep it up for a while, regardless of the response. I mean, it really does help me as a kind of self-therapy. I get to share things here that I wouldn't normally vocalize. (I'm not that much of a seriously emotional guy. I like to keep things quick-witted and on the surface, mostly.)
Moving forward, I thought I would document my recovery and try to organize this blog into something that might be helpful for others who have to have the same kinds of things happen to them.
I have recently been inspired by another website, a forum, where people actively talk about their experiences. It is Meningioma Mommas. The link is http://www.meningiomamommas.org/. On this site, there are several remarkable people who have survived the removal of various sized and shaped meningiomas. The reason I was drawn to their site, even though I did not have a meningioma, is that they have all undergone similar open-skull operations to remove their tumors. As such they have treaded the same waters I am heading into. The have been a wonderful resource to me in just the short time I have been posting on their site.
I would like my site to become however small a resource to whoever may find themselves in similar situations. I went through this with my family and friends but with no one who had had any REAL experience with this kind of thing. There is certainly no reason to do so with so many good resources out there. I will try to find more and point to them here on my blog.
Anyway, back to documenting my recovery. I am 16 days post-op and am currently taking no meds other than those I was taking before the surgery, with one exception.
At 16 days, I am still in a great deal of discomfort. My head actually still hurts, I have a headache on top of that, and my tissues are starting to itch; way down deep inside, they itch. I understand this will get MUCH worse before it gets better. My head is also still swollen in the temple areas. I am bruised in those areas as well.
My pain levels wax and wane with the day. In the mornings, when I awake, pain is the worst, at about a 7 or 7.5. Once up, however, I use ice packs, meditation and walking to try to refocus. By the time I have taken a shower and had coffee, the pain has become manageable, say about a 5 or 6. As the day goes on, I try to relax, meditate, get soem exercise by walking and pain goes down to about a 3 or 4 by midday. Then, pain goes back up in the evening. By bedtime, I am back at about a 6, taking aValium so I can get to sleep again without being anxious that I will wake up in even greater pain.
It's not all bad. Days are great, nights are bad, but for the most part, I guess I am healing. My left eye is now about 2/3rds open. It is still swollen in the lid area, so I expect to get full eyelid motion back. We'll see.
Other than the head area, I feel great. I sneeze about 2 times a day for some reason and sneezing is a trip. Anything that makes my scalp move is a trip. They cut away all the muscles fromt eh side of my face and re-attached them to the new bone areas. All that muscle cutting and reattachment makes the muscles pull in bizarrre new directions. Very trippy.
Hopefully my scar will stick around a bit. I have a hard time holding on to scars. They heal to nothingn on me. Maybe this one is big enough it will stick around.
Well, that's it for today. I will update in a while to see if anything changes. Keep thinking good thoughts out there, people. This, too, shall pass.
I have been giving a lot of thought about this blog. I put up a new poll to ask how long I should keep it up, but I think I may keep it up for a while, regardless of the response. I mean, it really does help me as a kind of self-therapy. I get to share things here that I wouldn't normally vocalize. (I'm not that much of a seriously emotional guy. I like to keep things quick-witted and on the surface, mostly.)
Moving forward, I thought I would document my recovery and try to organize this blog into something that might be helpful for others who have to have the same kinds of things happen to them.
I have recently been inspired by another website, a forum, where people actively talk about their experiences. It is Meningioma Mommas. The link is http://www.meningiomamommas.org/. On this site, there are several remarkable people who have survived the removal of various sized and shaped meningiomas. The reason I was drawn to their site, even though I did not have a meningioma, is that they have all undergone similar open-skull operations to remove their tumors. As such they have treaded the same waters I am heading into. The have been a wonderful resource to me in just the short time I have been posting on their site.
I would like my site to become however small a resource to whoever may find themselves in similar situations. I went through this with my family and friends but with no one who had had any REAL experience with this kind of thing. There is certainly no reason to do so with so many good resources out there. I will try to find more and point to them here on my blog.
Anyway, back to documenting my recovery. I am 16 days post-op and am currently taking no meds other than those I was taking before the surgery, with one exception.
At 16 days, I am still in a great deal of discomfort. My head actually still hurts, I have a headache on top of that, and my tissues are starting to itch; way down deep inside, they itch. I understand this will get MUCH worse before it gets better. My head is also still swollen in the temple areas. I am bruised in those areas as well.
My pain levels wax and wane with the day. In the mornings, when I awake, pain is the worst, at about a 7 or 7.5. Once up, however, I use ice packs, meditation and walking to try to refocus. By the time I have taken a shower and had coffee, the pain has become manageable, say about a 5 or 6. As the day goes on, I try to relax, meditate, get soem exercise by walking and pain goes down to about a 3 or 4 by midday. Then, pain goes back up in the evening. By bedtime, I am back at about a 6, taking aValium so I can get to sleep again without being anxious that I will wake up in even greater pain.
It's not all bad. Days are great, nights are bad, but for the most part, I guess I am healing. My left eye is now about 2/3rds open. It is still swollen in the lid area, so I expect to get full eyelid motion back. We'll see.
Other than the head area, I feel great. I sneeze about 2 times a day for some reason and sneezing is a trip. Anything that makes my scalp move is a trip. They cut away all the muscles fromt eh side of my face and re-attached them to the new bone areas. All that muscle cutting and reattachment makes the muscles pull in bizarrre new directions. Very trippy.
Hopefully my scar will stick around a bit. I have a hard time holding on to scars. They heal to nothingn on me. Maybe this one is big enough it will stick around.
Well, that's it for today. I will update in a while to see if anything changes. Keep thinking good thoughts out there, people. This, too, shall pass.
Friday, January 22, 2010
On The Way Home
Melissa and I left Dallas this morning and drove halfway home. We are staying in a hotel in Tulsa before starting off again in the morning. I could not have handled 8 hours in the car with light-sensitive eyes and squishy stuff in my head. They don't make enough Valium for that. But tomorrow, I will be safely ensconced in my own home, recuperating amongst my own belongings, with my cats!!!! Who love me and want to cuddle with me and lick my incision when I am asleep...
YUCK!!!!!! Maybe we can stay here for a few more weeks.
YUCK!!!!!! Maybe we can stay here for a few more weeks.
Thursday, January 21, 2010
Soon to Go Home
We leave Dallas tomorrow for home. I haven't seen my cats for weeks. Worse, Melissa hasn't seen her cats for weeks. We are very anxious to get back. For the trip home, I thought we would do it in 2 stages. Since I will not be able to drive, I figured Melissa could take the trip in two 4-hour segments. This means we should get home Saturday afternoon rather than Friday late evening.
I'd also like to take a minute to summarize what has happened so far, just so I can see it all in one place.
I was diagnosed with a bony mass in December of 2009.
I was referred to a surgeon in Dallas to take care of it.
December 14th, 2010 We saw the surgical team for initial consult. We scheduled the surgery.
January 4th, 2010 We arrived in Dallas to get our room, settle in, and get some pre-surgery testing out of the way.
January 5th and 6th, 2010 - Pre-surgery Testing
Thursday, the 7th, I got a rest and spent the day with my wife, my mom, my dad, my dad's wife, and my wife's dad.
Friday, January 8th, I checked in to the hospital and had surgery. I then entered ICU.
January 8th, 9th and 10th I was in ICU
January 11th, I was moved to 5 South
January 13th (Wednesday) I was discharged from 5 South on and checked back in via ER on January 14th, (Thursday)
January 14th to January 18th I was in-patient for the second time and discharged on Monday, the 18th.
January 18th, 2010 - Moved from one hotel to another for a better recuperative environment.
January 21st, 2010 (today) - sitting around waiting to go home.
So, from Mid-December 2009 to January 21st, 2010 I found out I had a tumor, researched it, located surgeons and had them remove it and then started my recovery from a successful operation in less than 45 days. I don't know why that seems fast, it just does.
My mother talked with a gentleman that was a cashier in a Gift Shop in the Hospital. She was relating my story to someone in line, and he overheard her and said that he had had the EXACT same surgery. Only his was done immediately, as he had passed out at work and awoke in recovery. No waiting around for him. I'm not sure I know what my point is, except that... he had no contol over his treatment. I had ALL the control over mine. I'm not sure which position I'd rather be in.
In either case, the surgery is over, it apparently went very well and now all I have to do is wait for the pain to subside, the bone to grow together, the swelling to go down, my eyelid to raise, and my life to get back to normal. Here's to normal.
For everyone that has followed this Blog so far, thank you very much for your support, for your comments, for your outporing of care and love. While it still seems very self-involved of me to have created this blog, I know that I wouldn't have had anywhere near the bright spots in my hospital stay without it. Thanks for being the beacon that I could focus on during the darkest moments of my recovery.
I'd also like to take a minute to summarize what has happened so far, just so I can see it all in one place.
I was diagnosed with a bony mass in December of 2009.
I was referred to a surgeon in Dallas to take care of it.
December 14th, 2010 We saw the surgical team for initial consult. We scheduled the surgery.
January 4th, 2010 We arrived in Dallas to get our room, settle in, and get some pre-surgery testing out of the way.
January 5th and 6th, 2010 - Pre-surgery Testing
Thursday, the 7th, I got a rest and spent the day with my wife, my mom, my dad, my dad's wife, and my wife's dad.
Friday, January 8th, I checked in to the hospital and had surgery. I then entered ICU.
January 8th, 9th and 10th I was in ICU
January 11th, I was moved to 5 South
January 13th (Wednesday) I was discharged from 5 South on and checked back in via ER on January 14th, (Thursday)
January 14th to January 18th I was in-patient for the second time and discharged on Monday, the 18th.
January 18th, 2010 - Moved from one hotel to another for a better recuperative environment.
January 21st, 2010 (today) - sitting around waiting to go home.
So, from Mid-December 2009 to January 21st, 2010 I found out I had a tumor, researched it, located surgeons and had them remove it and then started my recovery from a successful operation in less than 45 days. I don't know why that seems fast, it just does.
My mother talked with a gentleman that was a cashier in a Gift Shop in the Hospital. She was relating my story to someone in line, and he overheard her and said that he had had the EXACT same surgery. Only his was done immediately, as he had passed out at work and awoke in recovery. No waiting around for him. I'm not sure I know what my point is, except that... he had no contol over his treatment. I had ALL the control over mine. I'm not sure which position I'd rather be in.
In either case, the surgery is over, it apparently went very well and now all I have to do is wait for the pain to subside, the bone to grow together, the swelling to go down, my eyelid to raise, and my life to get back to normal. Here's to normal.
For everyone that has followed this Blog so far, thank you very much for your support, for your comments, for your outporing of care and love. While it still seems very self-involved of me to have created this blog, I know that I wouldn't have had anywhere near the bright spots in my hospital stay without it. Thanks for being the beacon that I could focus on during the darkest moments of my recovery.
Wednesday, January 20, 2010
Before and After Pictures - Revisited
k, here are some new CT scans from AFTER the surgery, in comparison to the BEFORE shots.
Now here is the AFTER picture:
No comments on the number of fillings I have, please.
Here is a frontal view.
And AFTER
There you have it. As you can see, the skull removal and replacement was throughout a large area of my frontal lobe, into my temporal lobe. They seem to have put it all back together, though.
Have a wonderful day.
Notice the smooth untarnished section of skull
Now here is the AFTER picture:
Everything forward of the staples was removed and replaced
No comments on the number of fillings I have, please.
Here is a frontal view.
And AFTER
There you have it. As you can see, the skull removal and replacement was throughout a large area of my frontal lobe, into my temporal lobe. They seem to have put it all back together, though.
Have a wonderful day.
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