MRI results and Plastic Surgery Guy

[PandoraHealer]

ok- We had a MRI done today. All went well for that. went right out, woke right up and ate- we got sent on to our neurosurgery appt. early. Got in early as well. Found out that the tumor has shifted down, and is no longer in her brain cavity (thank the Gods!!) BUT, we've been waiting and waiting for neurosurgery to decide she's big enough to do the surgery and now, she's telling me that since its not in her brain anymore, that the ORL and eye people will be handling most of the surgery... the orl and eye people wanted to do this surgery 6 months ago...
i had lunch with my dad and went back to the hospital for our appt. with the plastic surgery guy....
then life got harder... again...

dude comes in and straight up says. "we're going to cut her from her lip, up the side of her nose to the inner corner of her eye, peel that back, remove all the bone structure there, her jaw, her eye socket, cheek bone- everything. Then we'll remove the tumor, take a bone from the back of her head and start reconstructing the jaw and eyesocket. she will loose all of her teeth on that side and have to have implants. this will take 10-15 surgeries..."


HOLD UP JUST ONE DAMN SECOND HERE!!!

for the last 10 months i have been told that the dr.s would be cutting her head from ear to ear- over the top of her head- in her hairline. They would also need to go in through her mouth and remove the rest of the tumor in the lowe part....

Now all of a sudden we're going to turn a 10 month old into Scarface... excuse me?!?! he was not prepared to answer any questions I had except "why do we have to access the tumor that way, why do we have to remove the bones instead of work around them?" he said. "its a lot easier on me if we take them all out and we can always reconstruct them later...."
WTF? who flippin cares if its 'easier on you'- arent' you supposed to care about the patient?!?!

anyway- we went around and around for about 30 minutes. and i finally said that i needed to start my 3 hour drive back home and he gave me 2 #'s for other surgens in Dallas... so now i'm off to dallas for a 2nd opinion... we have to pay for the initial visit out of pocket b/c our insurance doesn't transfer state to state. (or i can live in dallas for 6 months and get on thier ins.)

*sigh*.... and on top of all that, by the time I got home I was so sick, i spent 2 hours laying on the bathroom floor crying and barfing. i *started*- lucky fudging me!

I guess i'm done now...

[Willow Rosette]

Ohhhh honey :hugz:

That is great news it has shifted and wont need "brain surgery". But I agree WTF??? Why reconstruct something where there is no need. I think getting several opinions is a good idea. Maybe call her regular Dr and ask if they can refer you to a Dr for this. Then maybe then you will find a Dr who does the procedure differently.

BUT Thank the Goddess it shifted. No matter what that is great news!

[PandoraHealer]

it is a wonderful thing that it shifted- we'll probably still end up going ear to ear over the top and doing some of the removal from there- but they haven't decided that yet.

this guy is a wack job i think....
i dunno.. i'm ready for another opinion. i really don't like that guy....

[Willow Rosette]

Follow that gutt feeling. When Toria was sick I took her to 4 different Drs before I found the one she has and we love. If your not 100% happy with the Dr that will only increase the stress and Lex will feel that. Find one you trust and dont settle for one you dont. Especially when your talking something like this.

[moonchild]

holy crap! totally get a second opinion! that totally seems unreal of what they want to do. did the guy actually look at the chart??? grr! keep us posted.

[TheWomanMonster]

Best of luck with the next appointment and consultation. You'll find the right doctor, don't worry.
And I am sending you energy to cope with the financial strain you're feeling too.

Hope you feel better soon, last thing you need is to be sick.

:hugz:

[RainInanna]

Sounds like a second opinion is absolutely a good idea. Take care of you and yours. Will be thinking about you and your baby.

[Eldawyn]

PandoraHealer: I really hope you get a better answer soon! I completely agree with the other posters -- yay for it moving, and boo for the surgeon wanting to cut like that.

I haven't seen the rest/beginning of your story... How did you find out that your little one had a tumor in the first place? I have a 9 1/2 month old myself...

[PandoraHealer]

She was born with the tumor. It is quite large. . The first surgery they did on the tumor, they removed about a golf ball size- and didn't even take out 1/4 of it.

I can't find any picures from before the first tumor surgery. To get a better mental image- imagine having a golfball inside your mouth in your cheek- the tumor was that much bigger. also- try to function like that- eat, drink, make sure when you're sleeping, you dont put pressure on it...
Blah!

anyway- I added the bathtub pic b/c you can see her scar from heart sugery. This was after her first heart surgery but BEFORE her 2nd. Its a little bit wider now- and more pink as well. (we have at least 1 more open heart surgery- but not until she's about 3 years old.)

anybody else have questions? makes me feel a lot better to talk about it. :~)

BB-PH

The last one is a pic of my mom holding her (thats not me- just FYI)

[wolfjan1]

I am not sure about now, but Dallas had some of the best Pediatric maxilofacial surgeons in the country. They Did work out of Medical City Dallas, hospital.
I WOULD get a second opinion. Any surgeon who tells you straight up that a surgery would be easier for him is a Big loud duck.

[wolfjan1]

it is a wonderful thing that it shifted- we'll probably still end up going ear to ear over the top and doing some of the removal from there- but they haven't decided that yet.

this guy is a wack job i think....
i dunno.. i'm ready for another opinion. i really don't like that guy....
medicalcityhospital.com
I suggest you check it out before you let ANYBODY cut on your baby.

[Eldawyn]

Aww... that poor little sweetheart. She just looks SO PRECIOUS.

Sending white light your way. I'm sure you'll keep us updated on second opinions and the like.

[Willow Rosette]

Ohhhhh Pandora she is such a beautiful baby. She has such kindness in her eyes. I agree with wojan1 get a second and maybe even a third opinion!

[angelmikayla]

She is adorable! So precious.
Why did she need open heart surgery?

[SidneyCozzoi]

She is a beautiful baby!!! You can see a gleam in her eyes, the kind that makes you all happy inside. I hope that you can resolve this issue. Sometimes doctors can be real jerks.

[Ferina]

My love I am so proud of you.
It makes my heart break that these things happen to kids that are so small and defenseless.
You make me proud to be a mother, you are so strong. I don't think I would cope if this happened to any of my kids.
Goddess Bless you.

My advice, Keep asking questions and don't proceed until you are comfortable. You are the decision maker at this point in time. We have a problem with very bad doctors here in Australia, so find one that you can research and make sure he is qualified to do what he is asking. Internet is your best friend at the moment, research and more research.
I am going to stress again, your instincts are your best asset, if you are not comfortable go somewhere else.

Love to you and your little angel.

[Lunacie]

I would say that's un-freakin-believable, but I find it all to believable and have actually met surgeons with that kind of attitude (regular doctors too). Sending positive energies for you to find the very best care for your little one, someone who will be good to you and is willing to explain and consider someone besides just himself. :hugz:

[PandoraHealer]

first- she had to have the heart surgery b/c she has HypoPlastic Left Heart Syndrome- basically, her left ventricle is just a tiny sliver- totally non-functioning. There was too much blood going to her lungs, not enough to her body- had to kind of re-arrange things to get more blood to the body. Shes had 2, thus far- a Pulmonary artery band, and the Hemi-Fontan operation. She will have the Fontan completion operation around 3 years old.
heres more info: http://www.americanheart.org/presenter.jhtml?identifier=1353

or: http://www.mayoclinic.org/hlhs/treatment.html

Now- as far as the doctors go for her tumor (which i can't give info on b/c the dr.s arent sure if it is Ganglioglioma or a type of Neuroblastoma, and there are a few other contenders.
anyway- The plastic surgen that we saw is the ONLY pediatric plastic surgen in this state. I have called and called and called other people and places- and have been told that many times. I called the surgens in Dallas and they are hesitant about taking her as a patient anyway- and from what i described, the only thing they could offer was to cut from the outer corner of her eye down the side of her face and along her lower jaw line.
I called Neurosurgery back to ask about the bone reconstruction. She said that the bones they are removing to better access the tumor are deformed anyway. They have grown around the tumor (which is why her teeth aren't coming in right on her upper jaw) so those bones need to be replaced anyway- why not get it taken care of while shes out for the tumor? (which makes perfect sense).
As for the scarring. I was told to look at pictures of children that had Cleft lip and see thier scars- many times they are cut in the same place from the lip, up the side of the nose to the eye- i can see the scars there. The type of skin thats on your face is much thinner and heals much faster and leaves a smaller, thinner scar.
and you can see them here:
http://www.operationsmile.org/articles/cleft-lip-before-and-after-pictures.htm
and here:
http://stlouischildrens.org/tabid/189/itemid/4228/Photo-Gallery.aspx

There is also this- which is readily available here in my area by some of the best plastic surgeons available- once shes a bit older, if it is still an issue- this is a wonderful option:
http://www.spcp.org/other.htm
There is a before/after down the page a bit of a scar on a womans leg- looks amazing-

Its much easier to see the scars if you are able to expand the pix to fill your screen.

anywho... thats where we're at so far... *sigh* i need a break!!

BB-PH

[Ravenna Angellin]

First off: Your daughter is beautiful!

Second: Get second, third and fourth opinions if necessary. I hope that the doctors will find a way to remove the tumor without too much damage, though it sounds like you've been doing your homework.

You are amazing and very strong to have dealt with these issues for so long! I bet that is why she chose you as her mother, because she knew that you'd go to bat for her and demand the best care available!

Good luck, and you and your girl will remain in my prayers!!

Much love,
~ Ravenna

[Chesna]

My nephew has a bi-lateral cleft lipand palate..and you can hardly see the scars. Your little one looks soo sweet. I hope that you find the answers you are looking for. Do you have relatives in another state that you could stay with to get a 2nd or 3rd opinion?? May the Gods bless you and keep you.

Chesna

[Lunacie]

Pandora, I'm so glad you were able to find someone who could explain the reasons for the change in surgery better than the clueless idiot who didn't give you time to process the drastic change in plans and couldn't explain the reasons for the change - only saying because it was easiest for him. Sheesh. This doesn't seem quite as mind-boggling now, eh. Best wishes and positive energies continue to flow.