What to say/ask when interested in surgery referral?

Imnay2 · #1 04-30-2008, 03:21 PM

My 1.5 year old Allyson has a follow-up appointment with her eye doctor about the hemangioma on her eyelid. Through an email consult Dr. Levitin recommended surgery due to the "soft tissue component" even if it wasn't affecting her vision. I am going to ask her eye doctor about a referral for the surgery and am not sure what to ask/say to him. Any advice?

Sidenote-I know her pediatrician wont' make the referral because he didn't even want to send her to an eye doctor!

missy · #2 04-30-2008, 10:05 PM

The best way is direct:

"I want a surgery referral."

It's hard, I know. I totally know. You feel like you're being a b**** or pushy or whatever. I've had to do it too. You honestly have to clench your buttcheeks together and shut your eyes tight and blurt it out.

But don't leave any room to be misunderstood. If he says no, tell him you will be seeking "more informed" opinions.

When is the next appointment?

Missy

Imnay2 · #3 05-01-2008, 02:11 PM

Her next appointment is in early June. Since I teach and have to return to work in August, I would really like to have the surgery done this summer if that's what we choose to do. She's 16 months and growth has slowed a lot, but there are no signs of involution so far.

Here's a picture of her!

missy · #4 05-01-2008, 02:29 PM

Gorgeous!! She's really gorgeous!

Let us know how the appointment in June goes. If you need some hand-holding, drop me a PM!

Missy

emonaco · #5 05-02-2008, 04:31 AM

She is so cute! Our ped was also very opposed to surgery and thought I was overreacting. My daugther's hemangioma was on her right eyelid, started out the size of a tiny little dot, and by the time she was five months, had grown significantly to where it was hindering her vision. I could no longer wait and see and had to do something!

I broke out in a cold sweat when I told our ped that we were going out of our network to Dr. Reinisch in LA to have him do the surgery. Our doctor as well as at least three others including dermatologists, opthamologits, etc...all thought I was making the wrong decision and that it was too aggressive of treatment.

Well, the surgery was a success, the hemangioma is a thing of the past, and every single doctor who has seen my daughter since has been amazed by the wonderful results! So, they are all really eating their words!!! Dr. Reinisch as well as the East Coast doctors are AMAZING.

Do what works for YOU and for your beautful daughter. We went against every doctor's advice and had Dr. R remove Sophia's eyelid and it was the best decision we could have ever made!

Best of luck!

Ellie

Imnay2 · #6 05-02-2008, 01:37 PM

Ellie, I'm glad I'm not the only one who wants to go against every doctor! And Missy thanks so much for the words of encouragement.
I think I will print off Dr. Levitin's email consult and take with me to the opthamologist.

Rachel06 · #7 05-02-2008, 11:15 PM

I also went through quite a bit to get out to NY. And, every doctor she went to - did not want aggressive treatment. We also had an eyelid excision - a bit different placement, but I would be happy to share photos if you like and to share our story. Let me know, I am all too familiar with the little voice that says "if they all tell me not to go - am I really doing the right thing". From where I sit - it definately was the right thing. Send me a message if you want to see photos sherrirfoster@sbcglobal.net
Best of luck to you in your search for treatment for your BEAUTIFUL girl - that smile makes me giggle!!!
Sherri

nickbar · #8 05-06-2008, 05:40 AM

Something to keep in mind (and I had to do go out of my comfort zone...this h. journey really changed my personality when it comes to fighting for what I believe in)... this is YOUR CHILD and who cares about a doctors ego or feelings when your mission is to get them the help you feel is best. As hard as some might resist you... you may have to hold strong and don't take no for an answer. We have great doctors out there...but truth as in any service industry some are just very stubborn and are not willing to look beyond their own experience.

Arm yourself with information on eyelid hemangioma involution. Dr. Levitin, Dr. Waner, Dr. Fay etc. can give you details on how soft tissue h. may result in atrophied lid. They see these cases everyday...so having a note/quote from the experts may help you convince your doctor.

Corinne