ANA Discussion Forum
General Category => AN Issues => Topic started by: jenij on December 17, 2008, 05:03:40 pm
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Hi all. Thank you for sharing your life on this board. It has been very helpful for my husband and myself in the last 6 weeks. He was diagnosed with a 2.5 AN on Nov.7. After doing a lot of research and getting 3 second opinions, we opted to stay local, in Boise, Id and have the translab done. My husband, Chad, had surgery on Dec. 1. Things were mostly as expected. If you can, as a support person, I suggest taking the whole week off work, just not 3 days. It was a very emotionally draining week.
Last Thursday, Dec. 11, the part behind the ear to the incision was swollen. He was put on antibodiotics. Doctor never saw him, just through the phone. Monday, called for an appt. - got one today, Wednesday. He has to go back in for surgery tomorrow and repack the hole. They used something called blue glue, and I guess it didn't work. They are going to us belly fat this time. He has to stay at 36 hours post op in the hospital and wear another tight bandage for 5 days.
I have read some post op stories, but have never heard of anyone talking about blue glue. I can't remember the real name, but it is like an apoxy and cement.
Please share any stories and encouraging word for us about blue glue, and post op repacking. The doctor didn't say it was an infection, just that the glue wasn't working to seal the area.
Thank you so much.
Jeni and Chad
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It's interesting that they didn't use belly fat the first time. I, too, had swelling after (LONG after) surgery and was put on a dirurhetic (diamox) to try and take it down. It seemed to help some, but not all the way. Until, they discovered that I was having an allergic reaction to the diamox (which landed me back in the hospital for four days about 2 months post-op). After being taken off diamox, I came back to where I was before (and better) and, get this, the swelling went down. Go figure.
Good luck with the repacking surgery. Things will hopefully go a little easier this time.
I agree with caretakers taking off work for longer than 3 days. I was in the hospital for 5 days and Jenni stayed with me at the hospital basically the whole time and then was at home for the next week or so afterwards. All told she was out of work almost 2 weeks. Her employer was more than amenable to her being gone so much. If one can, I second the motion for more time away from work for the caregivers.
Regards,
Brian
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Can't say I have heard of blue glue, but I have heard of incisions being redone. Tedious and annoying, but it will heal up sooner or later. It is unfortunate that it has to happen right when Chad is trying to recover from the surgery itself. It will drag it out a little longer, but he will make it.
I remember when Brian was going through that whole thing he described. Argh, I just know it can't be any fun.
I am glad to hear that overall the surgery went as expected. Please let Chad know that we wish him a gentle and successful recovery in the weeks ahead, and that he should take a lot of naps and take it easy.
Best wishes to you both,
Steve
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Sorry about the post-op return to surgery. They used some kind of spackle on my skull but it could be blue glue. Please give Chad my best wishes.
Marci
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our prayers are with your family
carter
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Yep, been there, done that. I has a CSF leak through the incision (almost unheard-of, according to my doc). I had glue applied liberally from 1 - 2 weeks post-op. When it became apparent that that wasn't working, I went back into surgery and had more glue, more stitches and staples. I didn't have to have it repacked, but the general idea seems about the same.
Best wishes,
Tamara
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Yep, I had a post surgical infection of the site about two weeks post surgery and ended up back in the hospital for 3 more fun-filled days with yet another festive turban. Then I was on antibiotics via IV at home for 4 weeks. Well, it all turned out well, so no worries. I am surpriised the surgeon didn't use belly fat the first time, but I guess it is surgeon's preference. This means, though, that he is going to have a painful abdominal incision to care for. I actually had more discomfort from the belly incision than the head incisiion!
Sending prayers your way - keep us posted!
Debbi
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I've never heard of blue glue, but I have heard of the fat graft - had one myself.
Sorry that Chad has to go through this, but I think the fat will do the trick.
He'll soon be in very good company. There are many fat-heads here on the forum ;D
Good luck,
Jan
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Jeni and Chad:
I'm sorry to learn about Chad's incision problem and the fact that he has to undergo some minor surgery to repair it. Not what he needs as he recovers but something you have to just deal with as it comes. I trust that the belly fat method will finalize this issue and Chad can get on with his recuperation. No infection is very good news. I have to assume that if an infection was present, your doctor would have at least mentioned it. For what it's worth, I've never heard of 'Blue Glue' either, but then, for some time, I thought Hip-Hop was just something rabbits did. Go figure. ;)
I agree that a caregiver taking a week off around the AN patient's surgery date is a very good plan, if feasible. My hospital stay was just under 5 days and I was pretty wiped for the next few days at home. I believe this is the norm. Fortunately, my wife was available for me (hospital and home) the whole time and was a great support, just as I'm sure you've been Jeni.
Please let us know how the incision repair goes. Thanks. :)
Jim
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Greetings, I have had two of these surgeries. One in 2004 with glue and one month ago with fat. Here is a top tip from my neurosurgeon. Leave the tape on the fat incision untill it falls off. If you take the tape off early you will get much much itching! for a long time time. So sorry about the 2nd time around, but hey, you get some more good pills :) :) :) Another tip from me, Popcycles are terriffic for head aches,,,,,,,,,Larry
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Thank you everyone for your supportive responses. Chad already seems better now that the CSF leak stopped. They used about a foot long by 4 inches of tape to cover the incision on the belly. The incision in the belly is only about 3 or 4 inches, so they really over did it on the tape. He is very hairy, so the process was not fun. But he is already home! We have two kids, 2 and 4, and they don't even mind the head turbun this time around. Chad is still Daddy. He just takes much needed naps.
A tip for others -
We really investigated all our options and found a great local neurosurgeon. It is much easier to recover at home. But, we didn't do much research on the ENT. We didn't realize the ENT handles the post-op problems and office visits. I wish we went with a differnt ENT with more experience. Don't know if the out come would have been different, but the ENT we have is new to the area and I don't feel he has enough experience with ANs and post-op complications.
Thank you for this board. I am sure there are others like me and my husband that do more looking than writing. It is very helpful!!
Jeni
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Hi, Jeni:
Good to learn that the incision problem has been resolved and Chad is on the mend, at home.
I may be the rare exception but I was diagnosed by, operated on and my follow-up care handled exclusively by my neurosurgeon. I never saw an ENT or any other doctor, before or after my diagnosis, with the exception of the radiation oncologist that worked with my neurosurgeon to 'map' my FSR treatments. He exited my case once the treatments were finished and he was sure there weren't any problems related to the radiation. My neurosurgeon schedules me for an annual MRI (they were scheduled semi-annually until the last one - my 2-year surgery 'anniversary') and he evaluates it and gives me a few very basic neurological tests, inquires about my progress (excellent) and that's it. I assume that different doctors handle their patients in different ways but my neurosurgeon (a prince among men, in my humble opinion) has taken complete 'ownership' of my case from Day One, and this has been beneficial for both of us.
I'm gratified to know that you and Chad appreciate the message board(s). We do our best. :)
Jim
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There are typically two doctors doing your primary surgery; an Otolaryngologist and a Neurologist (or neurosurgeon). My ENT referred me over to see the Otolaryngologist (who then sent me to visit with the neurologist). In my case, the Otolaryngologist was my primary doctor and never saw my neurosurgeon other than the 1 pre-op visit. Where you want the experience is with those two guys who are primary in the surgery. Secondly, you want the experience with the primary after-surgery care doctor (in my case, it has been the Otolaryngologist). Specifically, you want someone who understands the AN journey and all of the complications that might arise from that.
FYI, it's the neurosurgeon that actually does the removing of the tumor, so it's VERY important that he's skilled with AN surgeries. You've done well by selecting someone who is skilled in that area. Likely, he's partnered with someone just as skilled in Otolaryngology.
I doubt that you'll see much of the ENT even post-op. I could be wrong and it could be done differently where you are, but I've seen my ENT once (just before AN discovery, then was referred out to someone with experience).
Good luck with the re-pack surgery! I'm sure things will go smoothly!
Regards,
Brian