Titled for a couple reasons. 1, this was our third trip to C-Clinic. 2, This is the 3rd time I've tried to write this post. Either, distraction or DSL failure have gotten in the way before. Let's move on.
As you've read in previous post, we took off on Wednesday, had our appointments on Thursday, drove home Thursday-night picked up the kid / dog Friday and now you have a time line.
For the sake of not boring the crap out of you(But still no promises), we're only going to talk about Thursday. We arrived at the clinic around noon. BTW, calling this place a "clinic" is retarded. The word "clinic" makes me think of the show Becker, or maybe the emergency care clinic that's often part of a strip mall. Still, perhaps I should be cautious with the word "retarded" as I'm frequenting neurologists. It's bigger than any hospital, I've ever seen. Bigger than a community college. I dunno, maybe even a small D1 school. Sorry, back to not boring the crap out of you. 1st appointment was at 1pm with Dr. Gonzalez. He's my Neurosurgeon. Yup...Neurosurgeon. He will be preforming my SEEG.
The SEEG
This conversation was both calming, and nerve-racking. He was able to explain how low the probability of any complications are, but he was very detailed in what could go wrong. #1 concern, hitting a blood vessel and causing a "bleed". The size and location of the bleed determine the outcome / consequences. #2 - an infection. When was the last time you heard this, "Oh, I'd love to, but this brain infection is killing me."? I know bad choice of words. #3 - Hitting, clipping or crimping a vessel. That means stroke.
So, There you go. That's the bad news, here's the good. Concern #1 has a .05% chance of happening. They only go down from there. He is very positive about the result of the SEEG. He also seems to be optimistic for the extraction. Also good. He give a little higher #'s than Hantus did. I suppose he can be a bit more accurate, 'cause hes doing the work. More good news: We were told that we'd have to wait until Feb. for this SEEG. While we were waiting for the Dr. in our little holding pen, they got a spot or someone canceled or something, so right now we're scheduled for 11/23. They also said the would move that date up if they could.
On to the good stuff. The SEEG is a little different than I understood. Instead of two electrodes, there will be up to 16. Oy. He said "...you can compare them to spaghetti noodles". They are about the same size (2mm), but don't stick to the wall when cooked. After every thing is well placed in my head, I'll be wrapped up and sent to recovery for a short time. Then, on the Epilepsy Monitoring Unit. I'm sure those nurses can't wait to get me back. Anyway, much the same story as before, stay till ya twitch. They want about 5 this time. That's a bit frighting to me. But, I know they can stop the twitchin' at any time. All it takes is a little bit of IV happy sauce.
So let's say they get their 5. Now we wait. At best, they have everything they need and schedule a resection. Which is what Dr. Gonzales says is most probable. If that's the case we wait two months for my head to recover, before break out the exact-o knives. Second possibility, didn't get what we needed, so we need to replace the spaghetti (electrodes). The same two months apply here. Third, everything worked, we see it clearly and know where it and your motor functions are, but know it's decision time. "How much do you really use your left hand"?(leg, butt-cheek, whatever)
Yea, so, there it is. In all it's complicated, intense, gory, wonder. That's about it.
Oh yea, the we had a FMRI done that took about an hour. It's basically your standard run of the mill MRI but then you get instructions. It measures the increase in blood to areas of the brain to preform functions. After that we left and got home around 11:30p. Long day. Sorry for the novel. I'll try to keep it shorter next time.
As is standard fare for us right now, we continue to be greeted by people that are praying for us. That's great. Thank you all for all of you prayers.
Tony and fam.
Saturday, September 26, 2009
Thursday, September 24, 2009
Alllrightythen... (continued)
OK, not so rushed now. I'm sitting in my hotel room enjoying the dim luminance produced by by Dave's laptop. That does not mean that Dave is here, it means he's kind enough to share is toys. But I digress...
Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.
So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.
Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.
Type @ ya soon,
Tony
Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.
So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.
Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.
Type @ ya soon,
Tony
Wednesday, September 23, 2009
Alllrightythen...
So the short story is we got a call from Cleveland saying, "hey, we're down a tech, so if you want to do the FMRI this year better get up here. So after a brief nightmare with schedulers, we're on our way out of town at around 7:45p staying the night half way and then we have two apts. midday tomorrow.
Wish us luck gotta run.
Tony
Wish us luck gotta run.
Tony
Wednesday, September 16, 2009
And there's the flop
That not twichin' reference, or even a city pool reference, it's a poker reference.
After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.
OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.
But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.
Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.
So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.
That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.
This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.
We're still here, glad to have you-all, your prayers, your help and encouragement.
Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.
Tony
After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.
OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.
But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.
Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.
So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.
That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.
This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.
We're still here, glad to have you-all, your prayers, your help and encouragement.
Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.
Tony
Wednesday, September 9, 2009
Yup, I made it home.
I guess they had enough of me. The CCF finally sent me packin'. I stayed there for a little over a week and that was plenty. I don't ever want to do that again. ...until next week. That's right, I'm planning a return trip. This one shouldn't be as bad though. As I understand it, We're headed up there to discuss options with my Dr. after he gets out of a physicians conference. All of the Doc's (Neuro., Pshyc., Surgeon, even the intern) are gonna sit in a room and review charts, films of my head, vidoes of me twitchin', and then they're gonna say here are your choices. "A,B, or C"
I wonder what they'll say? or offer?
"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."
I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.
Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.
T
I wonder what they'll say? or offer?
"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."
I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.
Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.
T
Sunday, September 6, 2009
This one's from me with some good news!
Hi, this is Amanda. Tony has allowed my to post to his blog. I'll try and fill in the details of the last couple of days at the Cleveland Clinic, but may not be quite as entertaining as Tony is when he writes.
He has finally had some seizures and apparently has given the doctors some good data to review.
Let's back up a little ... They allowed him access to the Ictal Spect Test Tuesday through Friday. Each night he was sleep deprived and fell asleep at almost exactly 8am the next morning. A nurse waited as his bedside ready to inject him with the radioactive medicine as soon as he had a seizure. Then we waited and nothing happened, no seizures, so no test. Strange that a shortage of the medicine for this test was the reason his original appt here was moved from July to Aug 31st. Now, there will be not an Ictal Spect test, at least in this phase.
Friday night Tony slept and Saturday we just hung out together. Since he had been off meds for several days, I think he felt less foggy. I have enjoyed being with him just wish it could be under different circumstances.
Saturday night Tony felt like he wanted to stay up and see what happened, I fell asleep on my lovely pull-out chair. At about 5:30 this morning, I woke up to three nurses in the room and Tony having a seizure. It was rough on him, the worst I have ever seen. He said he hadn't had one like that since Junior High. It is obvious that this type of seizure is almost normal for the nurses here and they have taken very good care of him. He had another bad one about 9:30. The nurses decided to give him something to help calm him down and then he was give a half dose of his usual meds. He had a third seizure later on. This one was easier, but still not fun. He has slept for most of the day. So now, we are watching TV. We don't know what tonight will be like, but expect more seizures. We'll see.
Thanks again for all the prayers. We'll keep you posted.
Amanda
He has finally had some seizures and apparently has given the doctors some good data to review.
Let's back up a little ... They allowed him access to the Ictal Spect Test Tuesday through Friday. Each night he was sleep deprived and fell asleep at almost exactly 8am the next morning. A nurse waited as his bedside ready to inject him with the radioactive medicine as soon as he had a seizure. Then we waited and nothing happened, no seizures, so no test. Strange that a shortage of the medicine for this test was the reason his original appt here was moved from July to Aug 31st. Now, there will be not an Ictal Spect test, at least in this phase.
Friday night Tony slept and Saturday we just hung out together. Since he had been off meds for several days, I think he felt less foggy. I have enjoyed being with him just wish it could be under different circumstances.
Saturday night Tony felt like he wanted to stay up and see what happened, I fell asleep on my lovely pull-out chair. At about 5:30 this morning, I woke up to three nurses in the room and Tony having a seizure. It was rough on him, the worst I have ever seen. He said he hadn't had one like that since Junior High. It is obvious that this type of seizure is almost normal for the nurses here and they have taken very good care of him. He had another bad one about 9:30. The nurses decided to give him something to help calm him down and then he was give a half dose of his usual meds. He had a third seizure later on. This one was easier, but still not fun. He has slept for most of the day. So now, we are watching TV. We don't know what tonight will be like, but expect more seizures. We'll see.
Thanks again for all the prayers. We'll keep you posted.
Amanda
Friday, September 4, 2009
Holy Crap
Wow, It's been another day with relatively no change. I have missed yet another chance to "twitch" when it counts. I have about 6.5 hours to use the dose before it's diluted. So from 8am to 2:30, I need to produce, hence my prayer request. I need to either "produce" or stop having auras. I'm good with either. If I have no problem if the auras stop, then I just get to come home with no more mess. Or if I "produce", then will at least know how to proceed.
That's sort of the update. The other big issue is that We're both exhausted. I am being sleep diprived to help me have a seizure. Which is why I'm writing now at 12am.
Anyway, from all reports, Ella's doing well with her travels. Thanks guys. On to the good stuff. Here are some more pics.
Yup, that's me getting ready for a showger. I have to be water proof, So, I
t to look like an idiot.
Post shower, time for a walk. (Nurse Amanda cameo)
I also had some Whiskey prescribed to me. Just for fun, here are some pics of my Rx.
Nurse Susan holding / reviwing instructions for my Rx of whiskey.
RN/bartender Susan mixing my jack & coke.
More proof of Rx
That's sort of the update. The other big issue is that We're both exhausted. I am being sleep diprived to help me have a seizure. Which is why I'm writing now at 12am.
Anyway, from all reports, Ella's doing well with her travels. Thanks guys. On to the good stuff. Here are some more pics.
Yup, that's me getting ready for a showger. I have to be water proof, So, I
t to look like an idiot.
Post shower, time for a walk. (Nurse Amanda cameo)
I also had some Whiskey prescribed to me. Just for fun, here are some pics of my Rx.
Nurse Susan holding / reviwing instructions for my Rx of whiskey.
RN/bartender Susan mixing my jack & coke.
More proof of Rx
Wednesday, September 2, 2009
FIX! IT!
Dropping off ella at G-ma's
Hey all,
Thought I'd give you a quick update. Amanda & I are OK. We're both very tired. they switch our sleeo cycle. We'll be better once we get some sleep. Either way we're ready to get out of here. (hence the title.)
As of yet, I have not been "productive". Hoppfully soon.
You bet Dave:
I hope you enjoyed them.
I'll post more later. Please pray for some twitching and some sleep.
Thanks guys,
T
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