large lump after surgery

[ExpatJen]

I am wondering of anyone else's child had any larger-than-expected lumps on thier head following surgery. Audrey had one show up overnight 9 days post-op and it got larger over the following few days. It is about the size of grape, just by her left temple, where alot of work was done. She had left-coronal. She has no fever (I check all the time) and I put in emails to both surgeons. One said he expected it but he said it would be about 2mm thick (pea size) and the other, who waited longer to reply, advised me to bring her to him for a look, which we are doing Wednesday morning. My husband asked me if any of you had a similar scare - and if he is interested it must be alarming because he never reacts to anything.

The lump is hard, like a plate or screw feels, but it is such a strange size and shape that I'm worried fluid has built up behind it. Is that possible?
your thoughts would be appreciated,
Thank you,
Jennifer C.

Oh, and one other thing, Audrey has started winking her right eye alot and, I have to say, her eyes look even more assymetrical post-op than they did before. We were told the surgeons had to overcompensate and that we wouldn't see the final result for 2 to 3 years, but I am sick with worry that we made a huge mistake. And what's with the winking??? She's been doing it since before we left the hospital and it is still going on. Any ideas on that? I'll be asking the surgeon on Wed., but it's good to have some knowledge before the appt.
Thanks again.

[Katie]

:hugg All of your worries sound so familiar, it's like daja'vu! Dillon had a couple of those lumps, some were bone, and two were what his NS called subdural hygromas (if I remember right it is a bit of fluid, not on the brain, but between the skull and skin). He said that the hygromas should go away on their own after a while, and they have. I'm sure it's all normal, but it's good your going to have it checked :hugg

[Mom2William]

Hi Jennifer
I got your email too. Will did not have the same bump but it does sound like it could be fluid from katie's description. I am glad that you are going to see the surgeon.
Did Audrey see a ped. eye doctor before and after the surgery? Maybe they would know about the winking if your doctor does not have an answer for you. Hopefully - he will put all your concerns to rest.
I would love to see more pics so I could see if she is more asyemmetrical than before, but perhaps she is still a bit swollen and it is hard to tell at this point.
Hang in there and I will be waiting for you to post after the doctor visit. You are a great mom and you have Audrey's best interest at heart. Everything you have done for her has been with her at the forefront and the best possible outcome for her future. Big hugs for you both!

[Jennifer]

I can't help with the bumps, but I understand the assemtrical thing. For a few weeks post op I was freaked that I made the worst decision to do a 2nd surgery as the 'wide' eye was now alot smaller even though the swelling seemed to be gone. It does get better w/ time. Emily's are now pretty close to even, upon really, really close examination, I think the right still appears a bit smaller, but that's with me really looking..... Ask that question also when your there...just start making that list again so your prepared and don't forget

Man huggs to you! :hugg

[Jennifer]

Man huggs to you! :hugg


Along with those 'man' huggs to you, I'd like to send MANY huggs's to you also! :lol I am typing to fast apparently!

[ExpatJen]

What a day! We waited almost 2 hours to see the surgeon and then met a group of unfamiliar Drs all cramped in a small room with Audrey on what looked like a dentist's chair. She balled up and shoved her blanket in her face because she was afraid of them and the surgeon asks me if her behavior is new since the surgery and if soemthing is wrong with her. I said no, she's just 4 years old and afraid. Geez, this guy must not have kids. She's stubborn and didn't want them looking at her face. Anyway, the enormous lump on her left temple is what the Dr considers to be normal - it's a slow-absorbing plate and screws. He then mumbled to himself that maybe they didn't put enough (bone? plate?) above it and then told me that maybe, if in 1 or 2 years it still looks bad, we can have another surgery to "shave it a little".

I asked about the winking but didn't get a clear answer. He thinks maybe she is blinking but that the right eye isn't closing, but will do so in time. I am afraid his English was the problem because in Dutch, they don't have a word for "winking"(they don't wink here or in Germany and think it is a bizarre American habit) - they say "blinking one eye" which would be an involuntary act, never on purpose. So I just don't know. I didn't think about the language problem until later. I'll monitor it and keep asking if it persists.

My husband was furious that the surgeon thinks the lump is normal and that it will be there for about a year. I was also told that we have to be extra careful that she not bump it because it may cause a trauma. Great! All these things they didn't prepare us for.

Last night Audrey woke up with a terrible stuffy nose and cough. I panicked because we were told not to let her blow her nose for 2 months due to the damage to her sinus. She kept crying so I gave her an anthistimine, but then I worried that would dry the sinus up too much and lead to an infection, which we must avoid. I asked the Dr about the antihistimine and he said that was ok, so at least I can relax about that. Boy, this is just hard - and it seems to be getting harder every day.

Then, on the way home from the Dr's, my car broke down on the highway. I've never had that happen before. Of course my husband wasn't in his office and didn't have his cell phone on. 5 hours, a tow truck and $350 dollars later I am back on the road with nothing thawed out for dinner. Then my husband comes home and tells me he's going to a friend's to watch some pathetic soccer game and that "oh, by the way, my mother's coming for the weekend." Great.

Jennifer C.

[ExpatJen]

One more thing: Audrey's spirits are good - she is back to her old self but, of course, doesn't like the scar or the bump and I'm sure she doesn't understand why this happened to her. I wonder now if we shouldn't get a child counselor to help explain it all to her. I've tried to explain it but don't know if I succeeded. She sees herself as damaged after the surgery, not before, and I can understand her feeling that way.

If anyone else's older child had these experiences, I'd appraciate hearing about them.

Many thanks,
Jennifer C.

[Jennifer]

Wow! Not the best of experiences. It makes it harder that you didn't see the same drs that did the surgery. Obviously they didn't have kids....Sarah would do that put in the same situation- not even having had surgery.... I would keep asking I the winking eye...if it's not something she did before, I'd have it checked out....Many, many huggs to you and Audrey....hopefully the rest of the week goes better.

Also, I'm glad to here Audrey is back to her 'old' self again...that makes things so much nicer. If she continues to have concerns that she is damaged in a few months, it probably wouldn't help to see a counselor......:hugg's

[MikenAustinsMommy]

Big big big hugs to you Jennifer. My heart goes out to you.

[Lauren]

UGH! What a day! I'm glad that Audrey seems to be feeling better and I'm sorry you didn't get the best care today at the doctors office. I would be upset about the year thing too. Hang in there. I think that when you are all in Boston that we will be needing a night at a dockside restaurant that serves really big drinks!!!!! Hugs to both of you!

[Mom2William]

Jennifer - What a rough day for you and Audrey! Sounds like you will have a busy weekend ahead of you too!
I would keep monitoring the winking too. And hopefully her stuffy nose will clear up quickly and put your heart at ease!
Many hugs and strength and peace to you. It wouldn't hurt to have Audrey talk to a therapist, did your hosp. have a "child life specialist" that helped the kids with the surgeries? If yes, maybe give them a call.
I am glad she is back to her old self. I hope the bump goes away for you before a year! I would hate to wait too. Will's head feels very bumpy and one area feels like a right angle, but the doc. said it was normal too. But he is a little too young to be bothered with the scar. Altho. at one place on the side the hair seems to part and show the scar. He does ask me if his head is still broke and then he will say it is all better.

o.k. I am rambling now! Give Audrey a kiss from us and hugs to you!

[ExpatJen]

We saw the other surgeon today for a check. I don't know why but after this weekend my fears seem to be alleviated. Audrey seems less concerned, which must be why we are more relaxed. The incision looks so much better now, which I think was the reason she was distressed before and we had a good talk in which I tried again to explain why she had to have this surgery. I think it is hard for her to understand the future very well, which is the main point, of course, but I seem to have done a better job than before because she reacted in a more matter-of-fact way. Perhaps my anxiety showed through too much before and I was having to convince myself as well. But since seeing the surgeon last week and again today I feel like we're out of the dark unknown and on a safe path again. It is such a huge relief. Both surgeons said the lump is what they expected - it had been covered up by swelling before and is a slow absorbing plate. It still looks awful, of course, but knowing it will be gone one day makes it acceptable. And as long as Audrey is alright about it then we are ok. She had, I now see, been more worried before because we were worried. We tried to hide our emotions but kids are so perceptive. Also, her face seems to improve every day, which is amazing. Her right eye is still a bit lower than the left but we were told that would be the case for a while and are not worried about it. Also her forehead is looking so much better. It is a slow process but her face is evolving as it should, I think, and I am now getting close to the point where I can say that I am glad we went through this (not just yet, but very close). I suppose when that bump is gone I'll be ready to give both surgeons a big hug.

So today's meeting, although just a quick check, was very positive - my husband thought we didn't need to even go because we saw one surgeon last week but my view is that we should always get both opinions if we can and be sure that both surgeons agree on everything.

We will go back for another check in July. The surgeon also said today that we don't really have to talk to an orthodontist for a while so I'm not even going to think about that until after the summer.

I'll try to post an updated photo of Audrey soon.

Best wishes to everyone,
Jennifer C.

[verdon2]

:hugg Good to hear your ALL doing better!!! Love to see more pics!!! Hugs to you both!:hugg

[Jennifer]

:cheer to you all! I'm glad things are going better and you are feeling better about the whole thing. Those kids are SOOOO perceptive. It's amazing what they pick up! :hugg 's to you. Can't wait to see a new picture!

[ExpatJen]

Yes, it is such a relief to have changed gears a little. I think the day last week after that appointment and when my car broke down I was as low as I could get. But today's meeting did alot to boost my spirits. Both surgeons, I have no doubt, are excellent but the one we met with today has greater presence and if he says Audrey is doing well then I am reassured and relieved.

Does anyone know how to crop a photo? I tried to on photobucket but no luck. If I can't figure it out I'll take some more today but I have no idea how to download them from the camera to the computer (sad, I know, but my husband always does that). I'll get some new ones up soon.

Thanks again for your encouragement,
Jennifer C.

[Lauren]

So happy to hear that you are all feeling better! It really is a relief when you feel like the dark clouds are finally parting!