I made it!

[brianharte]

Visited Dr. Cueva and Dr. Mastrodimos on the 23rd for my post-op. Staples came out and they said I am ding fine. I have a little pressure behind my good ear but they told me not to worry about it. They gave me a return to work date of Jan. 12. Feels so soon! Hope I feel well enough to be back at it. I think my body needs the daily routine back.

I am 16 days post-op now and I started doing Cawthorne's Head exercises. They are harder than I expected! I'm pretty wobbly with my eyes closed. Thank God for my wife!
I learned how things feel different during a Christmas gathering. I'm sure I'll get used to it though. Everybody was so happy to see me though.

Good sleep is still eluding me. I've been doing better than before, but I have yet to get into a comfortable rhythm. I don't seem to get tired enough in the daytime to take naps. Seems like once I lay down and close my eyes, I suddenly become less tired. Quite frustrating.


I'm hoping to try driving around the neighborhood next week. I think I'll do fine with that. I've got  an hour commute to work, so I hope I get comfortable with driving pretty soon.

[suethompson]

Brian - how did the "drive around the neighborhood go" ? 

[brianharte]

Very good! I didn't notice any issues, which was great. I don't know how it'll be in heavy traffic, so I'm going to make it a point to drive around more next week.

[brianharte]

I'm a month post-op now. Had some swelling/puffiness of the incision area this week. I contacted my doctor about it a few days ago and he said not to worry about it (unless it keeps expanding), as it isn't unusual at this point in the post-op. Yesterday and today the incision area feels much flatter than it has been, so that is reassuring. One worry off the small list!

New worry! - Last night after reading in bed, I noticed  a BB-sized spot on my pillow from the incision side. Went to the bathroom and had my wife check it out. There was a very small dot of fluid or puss at the "corner" of my incision where it turns from horizontal to vertical. This really bothered me, as I don't think I've had anything leak up until now. This morning I didn't notice any other spots and the incision area is dry.
We took a picture last night and I emailed it to my doctor this morning. I'm supposed to go back to work on Monday, so I hope this is nothing to worry about.
Such a shame as I started sleeping almost normal this week. Up until yesterday I only took my sleep medicine once out of 4 days. After finding that spot last night, I  could not get to sleep, so I ended up taking half the sleep pill around 2:30 AM.


Other than that, things are going great. I've been driving around more often and I even took my wife to work yesterday and picked her up to come home.

Edit: Heard back from the doctor. He didn't seem to think it is a CSF leak. Maybe a deep layer stitch trying to come out or a hair follicle that was inflamed.  I certainly hope all is well.

[ANGuy]

Smart move splitting the sleeping pill.  I find with most medications, from tylenol to benedryl etc that half the dose works just as well as the whole, so why take more than you need.

As for the inflammation, puss etc, I'm guessing it's something minor that may or may not need a little in office addressing.  I doubt it's a csf leak or anything "serious".  All of that incision, hair, stitches etc and it's surprising there aren't more mild infections in a sight like that.  If it was something to loose sleep over, I think the Doc would have had you come in right away.

[brianharte]

Update: A lot has happened since my last post.  My incision area started swelling up a LOT around the beginning of February (around 7 weeks post op). Doc gave me Acetazolamide, but that did nothing to help. I ended up booking a new surgery March 11th to repair the leaking fat plug in my head. Luckily, I wasn't getting headaches or leaking CSF outside the incision or through my nose. My nightmare, a CSF leak came true. VERY difficult for me to handle, as I felt like I tried so hard to take it easy since surgery.



2nd surgery went well on the 11th and I left the hospital the following day. I took 0 of my 100 Norco pills, but went to tylenol instead. The docs said they saw exactly where the leak was and it was essentially working like a one way valve. I'm doing my best to take things VERY easy this time around. I don't want to go through anymore problems with this chapter of my life.

I had to keep a dressing on my head for a week after surgery and couldn't wait to get it off. That thing was so tight and the weather was only getting hotter. The docs told me I was trying to take it off as soon as I woke up from surgery! Once the dressing was off a week later, it looked pretty clean underneath to my surprise. I got the 33 staples out on March 24th and the Doc said all looked well. He is keeping me on Acetazolamide for a little while longer, which I really don't enjoy taking, but if it helps, I'll deal with them.. After searching on here, I'll make sure to not stop cold turkey!

I'm very happy to say that my body is recovering much better this time around. I'm a lot more relaxed and have been sleeping pretty well. (I had a HORRIBLE sleep problem after the first surgery in December). I am scheduled to go back to work April 13th unless I don't feel ready.


Anyway, hope everyone is doing well.

[ANGuy]

Thank you for the continued updates.  I am sorry you had a CSF leak.  Was the surgery to repair it a "big deal"?  Was it a complicated, involved matter, or was it relatively minor?  With your strong constitution, you make this all look like a walk in the park.  You are encouraging to someone like me who is WW but recognizes that I will probably need treatment at some point.

[brianharte]

Thank you. It was a real blow to my outlook when I found out it was a CSF leak and I would need to have another surgery. I have to admit it has been REALLY hard to stay positive at times. I'm here though and things could easily be much worse, so I do my best to be happy for what I do have.

My first surgery was 12 hours and this one was 2 hours, so it was really straightforward. Not fun, but like I mentioned before, it could be much worse. Basically, I got knocked out, fat taken from stomach, head re-opened and old fat replaced. They mentioned that everything else looked good in there, which was nice to hear. From there it was just back to the recovery phase again. My vitals were very good this time as compared to the first time where my pulse and blood pressure were always high.
 
I hope this is the last I deal with this. I've been mentally worn out over it and look forward to better days.
 Next scheduled milestone is the one year MRI in December.

I hope your WW turns out to be highly successful and you don't have to go through medical treatments, but if you DO, just know it could be worse!

[brianharte]

For those that had translab surgery, does the fat graft in the skull ever get cured and hard somewhat like bone? How long does it take typically? My docs said it would take a couple months, but I'm just curious about other folks on here.

I'm 6.5 weeks post-op now. (2nd surgery). I think its healing well. No swelling/CSF leak this time. Yay! Thank you God!!!

Walked a 5K today for March of Dimes. Felt really good.

[brianharte]

tomorrow is 8 weeks post op. (21 weeks from original surgery).
things are still going well. Trying to get used to the new normal. My main thing is the increase in head pressure by the end of the day. I'm  blessed that it isn't causing headaches and I hope it is something that decreases over time. I'll be pretty happy to pass through the 8 week mark.

I've had a few sessions with psychiatrists to help cope and get through feelings of anxiety and worry. Starting to learn how to squash those feelings before they spiral out of control.

Hope everybody is doing well.

[brianharte]

12 weeks post-op today  (just short of 6 months post-op from original surgery).

Been having kind of a bad week compared to the rest of my recovery. Been having a mild headache during the day. Not sure if it is just the weather or what. Hope that's all. The pressure buildup in my head toward the end of the day remains. I really start to notice it when I drive home from work. Wondering if the simple act of driving home is getting to me. I sit in traffic for about an hour going home... really hate it. I've got to look into something else. Might try and use the Metro.

My sleep pattern seems to go well for around a week, then messed up for a week. This week I have been sleeping pretty much through the whole night whereas last week I would wake up around 1 or 2 AM every night and have to move to the couch in order to fall back asleep. I'd get there after about an hour.

I feel like I'm starting to notice a mild metallic taste in my mouth. Not enough to bother me yet. Really trying to ignore it.

I've gone to see a couple psychologists to see if they could help me deal with some anxiety issues. They all seem to think I'm doing pretty well and I've taken to reading some books on mindfulness. They are definitely helping. It'll take practice though.

Ill be doing a 5K "Walk for Hearing" this weekend with some family. Really happy to have the support.
Looking forward to the Los Angeles support group at the end of this month. The helpful atmosphere is great!


anyway, hope everyone is doing ok. we can get through this with support from one another!

[ANGuy]

More advice from the lay-person peanut gallery here:  You are having a bit of a hard time and this is disappointing for you.  I think that is normal.  You had a huge AN.  I think overall you are doing very well for such a big tumor and the controlled trauma involved in getting it out.  Be proud of how far you've come so far, and hang in there through the hard parts.  Get the medical help you need, and rely on the toughness of your character to continue your path to recovery.

Thanks for posting the continued updates since your progress is encouraging to others.

[SueLL]

I agree with ANGuy - you are doing incredibly well for having gone through 2 surgeries, going back to work, participating in walks, etc.  I am almost a year out from GK, and I still feel after-effects often.  Personally, weather shifts, lack of sleep, and stress contribute to my feelings of fullness or discomfort, often leading to fluctuating tongue numbness.  Sounds like you have all three of these going against you.  We are all hoping to get better, and get better quickly.  One thing I have learned about having an AN and reading this forum is that most of the recovery is S L O W!

Congrats on your progress so far! 

[brianharte]

Thank you for the support.

As a very analytical person it drives me nuts not to know exactly what is causing every single "odd" feeling I have. I'm really happy to say that reading up on mindfulness is helping. I recommend it to all that have anxiety.


I've just got to roll with it. This is life, worrying about it isnt gonna help.

[ANGuy]

Thank you for the support.

As a very analytical person it drives me nuts not to know exactly what is causing every single "odd" feeling I have. I'm really happy to say that reading up on mindfulness is helping. I recommend it to all that have anxiety.


I've just got to roll with it. This is life, worrying about it isnt gonna help.

Exactly!  Some of this AN stuff is black and white, and some of it isn't.  Also, we win some of these issues, and we loose some.  As Sam Elliot said to The Dude, "Some days you eat the bar (bear), some days the bar eats you."