ANA Discussion Forum
General Category => AN Issues => Topic started by: Patti on June 19, 2008, 06:03:07 pm
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I haven't posted in a long time as I try to focus on my life, but I always read what is going on. I admire those of you who take the time to help others with ANs. I had retrosigmoid surgery 8 years ago at the age of 38. Things didn't go that well but I have adjusted and have a very happy and fulfilling life. Aside from my many problems from the AN, the surgeon left the whole in my cranium after surgery. Does everyone have that? Once I was body surfing rough waves in the ocean and got an elbow right in the hole! Patti
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No, I was told that the piece of bone/skull would be replaced and if that could not be done--a titanium plate was used. I'm sorry you had a rough experience.
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Hi, Patti:
I'm glad you're that you're happy and getting on with your life, post-op .
I wasn't aware that a surgeon wouldn't - somehow - replace the piece of the skull that is necessarily removed when performing AN surgery. I have the titanium plate. Others have the missing piece packed with relocated body fat, which I assume is what was done in your case. Obviously, the body fat was either absorbed or somehow dislodged and you're left with the exposed skull. This is very unusual, to put it mildly.
I would want to have this looked into. However, if you've gone this long with the 'hole in your head' with no adverse effect, it can't be too dangerous. No offense meant, Patti, I still think it's kind of weird.
Thanks for posting and showing many of us that we can still learn something new everyday. :)
Jim
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Patti~
I had a translab and they packed it with fat. The fat absorbed back into my body and so I have an "indention" behind my ear. I asked the Dr. why the fat disappeared on my head but not on the rest of my body...he just shook his head and said only I would ask that!! ;D
K
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Jim Meaning no disrespect to either you our Patti but "It's still kinda weird" gave me a good laugh in a laugh drought. I'm thinking that pretty much sums up my whole AN adventure -- "it's kinda weird."
But Patti gave me something new to be paranoid about. I knew about the fat packing -- got a scar on my stomach -- but I thought we all had plates over the hole in the head. What's holding the fat in if there isn't a plate?
David (with a new AN neurosis)
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I also have a indention behide my ear.I call it my little grand canyon.The fat must been absorbed by my body.Strangely it ended up belly.Maybe I should try standing on my head.... TLC
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i never even had fat put in there. too bad! a few days after the surgery he had to go in again to reduce brain swelling by putting in a temporary shunt and removing a portion of the cerbellum. i wonder if he somehow knew he'd have to go in again. i remember asking him why the hole and he said because it is not a visible part of the body. patti
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hello Patti
My bone was placed back in its place with some of the fat taken of my hip to fill the area. I almost think I can fill the fat because it still a little fuller in that part of my skull.
eve
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I had trans lab and the fat has dissipated, too. I now have the Grand Canyon and it scares me because that area is very tender and I'm afraid I will puncture it somehow. I'm just paranoid! It does feel kinda wierd!
Brenda
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I had fat packed in. The skull piece was replaced back in and held in place by strips of titanium mesh (over, not under, the skull piece) held in with screws. Calcium phosphate paste was not used. (Some surgeons use this “skull putty� but others feel it puts the patient at higher risk for post op infections- years later). I do have a large indentation in my head much like Crater lake (speaking like a Oregonian hear)… no one has placed their elbow in it however.
Body surfing sounds cools. What happened after you got elbowed?
Daisy-Head Mayzie
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I didn't realize until the other day that some AN patients have a hole left in their head when Lori mentioned she had a hole in her head in one of her recent posts.
I am part of the fat/titanium mesh/titanium plate/piece of skull replaced crowd.
Jan
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mazy-body surfing (playing in the waves) is my favorite, youthful activity. i go to the jersey shore or to visit my parents in florida. the elbow incident just scared me but no harm done. patti
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Hi Patti--
I had my original surgery done 20 years ago (Round #2 is coming up next Tuesday!), and nothing was done to replace the missing piece of skull (no fat packing, titanium, etc). Since my neurosurgeon was one of the top AN doctors at that point, I'm assuming it just wasn't standard practice at the time.
I;ve been vaguely aware of the indentation back there, but because my hair camouflages it didn't realize how big it is till I sat reviewing one of my current MRIs with my current neurosurgeon--it looked like an ice cream scoop's worth was missing! Fortunately, I've never had any problems. I must admit I'm glad they're going to pack and use titanium mesh this time--I wouldn't want the "hole" to get any bigger!
Carrie
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Apparently, it's still standard practice for some surgeons, because I didn't have the piece of bone replaced either - no titanium, no silly putty, no screws. I have an indentation the shape of a triangle behind my ear. It's not noticable, unless i decide to go with the shaved head look, which I don't plan on doing any time soon. too many other scars and metal things sticking out! :D
I really never thought about taking an elbow to the area though. Sounds like it would hurt. I guess my rugby playing days are over. :'(
Lori
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I also have the grand canyon hole in my head behind my right ear. They did put titanium mesh in at the time of my AN surgery, but had to remove it due to infection.
Linda
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well, it is comforting to know i am not alone! patti
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carrie-i am so sorry to hear you have to have removal again!! how old were you the first time? how did it go? how did you find out about the new one? patti
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Wow, as David said, this has given me somethign new to worry about! Since I'll be seeing the neurotologist Monday, I'm going to ask him exactly what (besides belly fat) is in my head! I am pretty sure I remember the neurosurgeon saying that they replace the chunk (technical term) of skull after the surgery, but not sure about screws, plates ,etc.
Carrie, I am sending lots of positve energy and prayers your way for Tuesday. Do you have someone to act as a scribe for you? You know we'll all be anxious...
Debbi
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Patti--I was 29 for the first surgery, and found the regrowth in February, after going to my PCP with some trigeminal neuralgia-like symptoms (very mild and intermittent, and on the non-AN side!) and being referred for an MRI. I had 20 good years between surgeries, and and hoping to break that record this time!
And thanks, Debbi, for the good energy and prayers--definitely in order! My husband will be posting updates for me--he pretty much goes through life glued to his laptop, so all he needs to do is go to a part of the hospital with wifi and type away!
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Patti -
I was amazed when I read your post. I had no idea some surgeons left a hole in their patients' skulls and closed over them. Even though it seems there are no ill effects from that practice, I asked my neurotologist what he does. It made me feel better that he uses titanium mesh, I'm not sure I'd be okay with a hole in my head, even though it doesn't really seem to pose any real problems. Hope no one else manages to elbow you again -- that does seem unlikely. Wishing you all the best.
Wendy
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As Dr. Roland was subduing my spitting sutures yesterday, I asked about this. Turns out that they glued the piece of my skull back in (he said it's about the size of a silver half dollar) and attach it with several small titanium plates. Very interesting. He also assured me that the titanium won't set off metal detectors! (which I already knew since I also have a titanium market in my **** - but that's a story for another day... :o)
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He also assured me that the titanium won't set off metal detectors! (which I already knew since I also have a titanium market in my **** - but that's a story for another day... :o)
Debbi -
can't wait for that story! You might have to post it on your blog though so Phyl doesn't censor you :D
Titanium also won't show up in MRIs - learned that one from my doc just last week! We are such special people, aren't we? ;D
Jan
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Jan -
We're obviously special, otherwise we wouldn't have ben "blessed" with ANs. Only the most special people get to have them!
Feeling truly "special" today!
Wendy
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Well, I don't know about you, Wendy, but I could have probably gotten through my life just fine without being "blessed" and "special" ;)
Jan
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Yeah, but then you wouldn't be talking to us! You'd miss us! ;D
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Yeah, but then you wouldn't be talking to us! You'd miss us! ;D
This is SO true! I don't know what I'd do without you guys!
I guess I'd be forced to take my droll sense of humor elsewhere :P
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Jan and Lori -
I'm always looking for the silver lining and here it is in black and white (well, I guess your pictures are in color Mine would be too if only I could post a picture -- I'm so hopeless at this stuff). Lori is right -- if we hadn't been "blessed" with our ANs we wouldn't have "met" and would have missed the opportunity to share our own brands of humor and compassion.
Lori - I'm getting so absent-minded I'll blame it on my AN (they certainly do have their uses). Did I PM you last night (I think I did) and let you know I wasn't going to make it to the Shore on the 18th after all? Doctors have a way of ruining my well intentioned plans, and it looks like I'll be spending my day at Dr. Choe's and Dr. Chen's offices. Hopefully there will be another opportunity soon.
Wendy
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Don't worry Wendy - there are days I'd forget my head if it wasn't attached! Yes, I did get your PM.
I think you should wear your bathing suit and bring a towel and a beach chair (and a margarita) to your doctor's office so they know what you'd rather be doing! :D
Lori
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I think you should wear your bathing suit and bring a towel and a beach chair (and a margarita) to your doctor's office so they know what you'd rather be doing! :D
Wendy -
if you actually take Lori's suggestion, I think you should have someone take a nice colored picture and I will personally walk you through posting it on this forum ;D
I would not want to miss that :D
Jan