Jonathan's Updates

Surgery and other updates for Jonathan

 

First post surgery consult

January 25th, 2010 by JonathanNo comments »

Just got back from the scene of the crime. Seems like years since the brain scooping on Dec 11th. In a nutshell, the lead guy said I’m on track to being fully recovered — 3 months post surgery — leaving a month or two to go. Lingering issues are still the gimpy right hand, tiredness, and choppy speech. A new problem I discovered is that changes in altitude feel like an ice pick in the ear. Mt Lemmon at 9,000ft last month was awful and this weekend in Prescott at 5,000 felt like the worse tequila hangover. No air travel for me for a bit. I should be able to decrease my pill count soon, as well.

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Jan 6th stitches

January 6th, 2010 by Jonathan1 comment »

“Disolving stitches” my ass! We were two weeks over the estimate so Pam pulled them out last night with tweezers and a toenail clipper. Better not get foot fungus in my head hole.

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Xmas Eve update…

December 24th, 2009 by Jonathan1 comment »

Happy X-Mas Eve!

Sorry for the slow update. I was waiting to do some side-to-side Photoshop comps of the before and after the procedure. Here they are. Click the thumbnail to view the full undistorted image:

Before and after removal, frontal view
Before and after removal, top down view


 

 

The status of  my recovery, as of today, is pretty good from what everyone tells me. I still feel very frustrated with the lingering symptoms no matter how small, including headaches, no feeling in the right hand, and seizures every 3-4 days so far.  I still seem to be fishing for words and speaking a tad choppy, although this seems to be getting better.

Again – THANK YOU ALL again for all your support. We never planned on chatting with family and attending company holiday parties.  I think I’m gonna have my first drink in prep for Santa, fingers crossed!

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What’s going on now?

December 17th, 2009 by Jonathan6 comments »

First day back at home and Pam wants me to  not freak out at my remaining issues.

The biggest of all is NO feeling in my left right (oops!) hand. I can type cause I’m watching my fingers but my gold feedback test is putting a quarter, dime, penny, and a poker chip in my pants pocket to see if I can pull out a desired combination at will. My status as of today (12/17) is that I feel no end to the pocket’s fabric much less any of the objects in the pocket.

Trying new things today to jump start my “mouse-hand” like holding an off-balanced weighted electric motor (will find something in the shed) or dunking my hand in alternating hot/cold water. I will be carefull.  ALL YOUR CREATIVE SUGGESTIONS ARE WELCOME!

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Latest update – Tuesday

December 15th, 2009 by Pam4 comments »

So… he got admitted to the hospital last night essentially so he could talk to an epileptologist (at least, that ended up being the only real reason). That’s what he got this morning.

The doctor asked why he’d been admitted (he couldn’t see the need) and then went over his whole history (pre-AVM in 1999 till now). He believes Jonathan was having seizures before the AVM was diagnosed (one of the sympoms he was having — numbness and tiny periods of loss of words) and he isn’t sure the surgery addressed the seizures. But… since it’s so soon after the surgery, he said (as well as other docs) that his lack of food and sleep could have caused these seizures (or greatly contributed to them).

So, we’re going to take it easy for a while and rest and see how things go. His keppra level got bumped a bit, but that’s all that really happened from last night’s visit. We also have the ability to make an appointment with this epileptologist to explore other options (without having to wait till May to get an appt with him — he said that’s the current waiting time — he thinks we could get in in Jan or Feb).

One of the doctor’s suggestions was a surgery that involves something about cutting slices in the area where he believes the seizures start so that when they happen the electrical current can’t jump to other parts of the brain (either stopping or greatly reducing the seizure frequency and severity). They’d use the grid and the mapping thing that the other epilepsy doc in Tucson suggested. It seems like there’s a holy war (Jonathan’s term) in philosophy in how to approach these things — with epileptologists on one side and neurosurgeons on the other. One for tooling around in active brain tissue and trying to pinpoint where the seizures start (to curb the seizures/address the “epilepsy”) and the other camp is all about taking out the necrotic tissue (to curb the seizures, reduce the swelling) and seeing how things progress after that (with the possibility of more surgery down the road). This guy (epilepsy guy) was saying they’d “try” to avoid areas where they knew there was brain activity, but that they’d need to pinpoint where the seizures were starting. We’re not ruling it out, but it sounds like there’s more risk for functional loss with that surgery than the one he just had (one of the reasons we chose this surgery over the one suggested in Tucson) and if the swelling goes down in a few weeks to a few months after this surgery (one doc mentioned seeing the swelling go down over 6 months), his seizures may also be greatly reduced and there would be no need for the other surgery. I asked about the vagus nerve stimulator (less invasive) and he said that it was also a possibility, though it typically only works for 30-40% of patients.

So… in  a nutshell, we plan on going home tomorrow. Jonathan’s still a little slow and labored (physically and with speech), but we’re thinking that lots of rest and nutrition will help out. He may need to work on a few things, but it seems everyone (docs on both sides of the holy war) agrees that he should see improvement in some of the issues (speech and coordination on his right side) as the swelling goes down — the swelling from before the surgery and the swelling that was caused by the surgery.

We’ll keep everyone updated.

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He’s being discharged…

December 15th, 2009 by Pam2 comments »

It’s always nice when you hear a doc say “why are you here?” in terms of being admitted to the hospital. :)

His speech is still labored, but better. He’s walking fine. I’ll add more details when we’re back at the hotel.

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He’s back in…

December 14th, 2009 by Pam5 comments »

It’s not as bad as it sounds, but it’s not happy.

On his way to get the CT he seized again. And like all good ERs, they automatically drug you up when that happens, so they put a bunch of lorazepam in him. Not sure how much, but for Jonathan, the standard 1 mg makes him pretty out of it.

So, when the neurologist saw him, she wasn’t happy that he was so out of it (slurred speech, slower reaction times and a little off balance when walking). None of this stopped him from eating the pizza, though. :) And, there’s no way to know if the symptoms are a result of the lorazepam or the result of having 2 seizures (he was mostly ok about an hour after the first seizure — when we were ordering pizza and all that). She came out and said that some people seem like they’re drunk when they’re given lorazepam (which is close to how Jonathan has seemed on it in the past), so… But, she was pretty insistent on having him stay the night so the epilepsy neurologists can see him in the morning. She said there would be no other way to see them other than getting admitted (that they have no open appointments for months) and we wouldn’t mind hearing what they have to say compared to the Tucson doc. We thought they might do some more tests to see about the new seizures, but they ruled out an MRI (since he just had one Sat night), so it’s basically to talk to the docs in the morning and they’re talking about upping his meds. We’ll be asking about making that a temporary thing since everyone’s pointing out that lack of sleep and food (he’s missed out on both since the surgery) could cause seizures and he may just need lots more rest and food to get back to not having seizures. And they plan on giving him some drugs to really make him sleep tonight. He just started getting a decent amount of food in him toward the end of the day, but hasn’t eaten any real amount of food since Thursday night (the pain from moving his mouth wasn’t helping).

We’re also going to see what they have to say about the language stuff — that seems to be a more prominent issue since the surgery. He had some real difficulty speaking about 15 minutes before his 1st seizure tonight and after the 2nd one he never fully regained his ability to get the words out — he said he knew what he wanted to say, but couldn’t get the words out of his mouth correctly (again, unsure if the lorazepam was aggravating his issues).

Anyway, that’s the latest. Pretty relieved we were still here, though it doesn’t sound like we’ll be getting any earth-shattering news tomorrow. The neurologist on call pretty much told us they’ll be suggesting increasing the meds and that’s about it and that we should expect to get discharged soon after meeting with them.

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Minor setback

December 14th, 2009 by Pam2 comments »

We’re in the ER. Jonathan had a seizure a couple hours ago. It wasn’t horrible, but wasn’t his smallest and this is the only way we can get him checked out right away. They’re doing a CT and plan to discharge him if that looks ok and neuro says it’s ok.

He’s up and talking and we just ordered Domino’s pizza (his idea/request) while he watches Law and Order reruns. :)

More when we’re back at the hotel, but we think he just overdid it today – walked from the hotel to the hospital and back and then was going through the 467 MRI scans when he seized. Right around the time he should have been taking his anti-seizure meds. Oy. :)

He’s off getting the CT now.

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He’s out!

December 13th, 2009 by Pam2 comments »

Well, we don’t know if it was the bitching about being stuck in the ICU or not, but they let him leave the hospital today. :)

Two days after a craniotomy… Wow. Anyway, he’s still in some pretty nasty pain and feels dizzy and nauseated (we’re not sure if it’s just the result of the surgery or if the percocet is adding to that). He’s eating a little, but not tons. His speech is slow and labored. Both of those issues are probably partially the result of swelling and muscle pain — he’s got a bruise behind his ear and swelling in his neck along the jaw line — so it’s painful to open his mouth to talk or eat. I’m still in shock about how well he’s doing just two days after surgery, but I know he’s frustrated with the pain and with seeing some slowness. Also, his right hand isn’t as responsive as it normally is (dropping a few things and the dexterity isn’t quite there, yet). He’s also got some difficulty with assessing how much time has passed — generally thinking more time has passed than it has. I’m thinking most of these issues will resolve themselves as time passes and his body heals from the trauma of surgery, but we’ll see.

The doc wants to see him again in 7-10 days. We still don’t have a firm answer on whether the stitches are dissolving ones or not, so I guess we’ll find out tomorrow when we call the doc to make the follow-up appointment. I think we’re staying in Phoenix to make sure everything is still ok in the coming days, but that may change after tonight. Kyan’s in the room with us and because he’s not feeling great, he’s cranky. Not sure how Jonathan is going to feel if Kyan wakes him up with crying throughout the night. :(

I asked him about calls and stuff and I think he’s still too beat and in pain for that. He seemed overwhelmed when I mentioned it. He does have his BlackBerry, so he can see emails if anyone wants to try, but I wouldn’t suggest calling. He may answer and get frustrated that it’s still hard to talk (he said it takes a lot of effort on his part). Right now, he’s passed out (hopefully) in the room with Kyan (who has hopefully stopped crying).

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Thanks to the Nerd Fest guys…

December 13th, 2009 by PamNo comments »

You know what you did. :) Very cute. :)

He’d probably prefer to be off biking with you guys… ok. Probably not. :)

Thanks!

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Thanks everyone!

December 11th, 2009 by Pam1 comment »

Just wanted to thank everyone for all the well wishes and for checking the site. It’s such a relief that I don’t have to wonder if I forgot to email or call anyone! And Kyan’s thankful, too – more time for mommy to entertain/distract/feed/hold/diaper/walk him. :)

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Room

December 11th, 2009 by Pam2 comments »

He probably won’t have this room post-surgery (ICU for a bit), but it should be pretty similar.

Kyan hanging out while dad showers

 

Kyan hanging out while dad showers

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Surgery is all set

December 10th, 2009 by Pam1 comment »

He’s in a private room (and looks like that will be the case for his recovery, too) and already asleep. Hopefully. :)

The official start time is 9 am, but they said they may take him back before 7:30 am. I think they’re pretty punctual at this place and there was talk of him getting up at 5:30 am. Ugh

Anyway, the angio went well and that’s a good thing because Jonathan’s last angio (ten years ago) was hell and included lots mentions of pain. He tells the story like it happened yesterday. :) So, the fact that this was pretty painless and a shorter recovery time (he was up in 2 hours) was definitely a bonus. We’re hoping that holds true for all surgery advances in the last 10 years and that tomorrow goes smoothly.

Per one of the neuro residents, the surgery will take “as long as it needs to take,” (he said he was repeating what his boss, Dr. Spetzler, always tells people), but that generally most fall in the 2-5 hour range. And he said the “minimum” stay is 2 days and the average is 3-4. So, we’re keeping our fingers crossed.

Think that’s all for now. Will post updates as they happen.

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We’re in Phoenix

December 10th, 2009 by PamNo comments »

We got in around 1:30 am, got settled in the room and we’re up in just a few hours for the 7 am hospital check in. Just wanted to let everyone know we made it up here with no problems. :)

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Functional MRI and Phoenix trip

December 8th, 2009 by PamNo comments »

So… yesterday was the functional MRI at St. Joseph’s outpatient MRI center (the other pre-surgical tests were postponed till Thursday — after checking in to the hospital and when the angiogram will be done).

There’s not much to tell since they don’t give you the results while they’re doing it (they always have the doc tell you what they saw) and the reason it was done 4 days early was because it takes extra time to get the results (vs. a standard MRI). The only thing of note that Jonathan noticed was that at one point he was asked to tap his right hand. He did that. The tech then said “no, your right hand.” He told her he WAS tapping his right hand. And all she said was “oh” and they had to redo that part of it. She didn’t explain anything else after he asked about it later. We’ll ask what that was all about when we see the doc.

Other than that things went well. We got to see snow in Prescott (right before we left). One not so great thing — the windshield trim came off in 2 places on our drive home (nasty wind gusts between Phoenix and Tucson last night). So, my car’s getting a new windshield tomorrow morning — got postponed — (for free — replaced by the people who replaced it about 2 years ago and obviously didn’t do something totally right. UGH.). Because we needed a little more fun in our lives and something else to do to pass the time before our drive back to Phoenix tomorrow night.

We’ll add more on Thursday, I’m sure, but at this point, I can’t imagine there will be any real news or updates till Friday.

Pam

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    • He’s out!
      Sunday, December 13, 2009 | 7:46 pm

      Well, we don’t know if it was the bitching about being stuck in the ICU or not, but they let him leave the hospital today. Two days after a craniotomy… Wow. Anyway, he’s still in some pretty nasty pain and feels dizzy and nauseated (we’re not sure if it’s just the result of the surgery [...]

    • Jonathan just got word that he’s getting discharged today!
      Sunday, December 13, 2009 | 9:18 am

      Don’t know all the details, yet (Kyan’s got a bit of a cold and I had a sore throat overnight, so we slept as much as possible to try to kick it)… Heading over to the hospital in a few and will post the details when I know them. We plan to stay in the [...]

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    • Just saw him…
      Friday, December 11, 2009 | 3:54 pm

      He’s in some pain, but he’s talking and lucid. He’s not saying much or moving his right side, but he’s also still dozing off in the middle of things. He’s still in recovery, but they have a spot in the ICU – they’re just cleaning it. Not sure how long till he’s moved. We’re back [...]

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