Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   deciding what action to take (http://birthmark.org/board/showthread.php?t=2742)

ashesmom 01-21-2008 01:47 AM

deciding what action to take
 
Hi all,

After consulting with two local opth. who gave us two different opinions about Ashes eye H, we finally flew our daughter to see Dr. Fay in Boston this past Weds (actually my hubby made the day long trip alone with our 2.5 month old daughter - very brave man) Dr. Fay recommended surgically removing her eyelid H (it is now in her eye orbit too). My question is this - how do you know in your heart what the right course of action to take? It is almost worse now that we actually have to decide what treatment to do, either a steroid injection or the surgery. Either way she needs put under and if the injection doesn't work then she would need the surgery anyhow. And both procedures have their own complications.... We are excited about having found this site, because it led us to Dr. Fay, who is definately the Dr. to treat our baby, but we feel like no matter what decision we make it is going to be the wrong one.. I think we are going to go with the surgery, but I am scared because I don't want to make a mistake and would never forgive myself if anything happened....

how do you get past the what-ifs?

Thanks in advance for any advice - Ashes mom

missy 01-21-2008 11:29 AM

Well, how do you get past the what-ifs? What a great question.

What does your gut say?

I know what I would do, but I don't get my opinion counted, do I? I'm not going to sit in the waiting room with you, or go to recovery, or have to take her back home.

I will say this: In this case, the only wrong decision is NOT making a decision. Either choice here has the chance to work. There really is no wrong decision, so don't beat yourself up with that! You are being proactive as parents and getting the treatment that is needed (and I add, with one of the best physicians in the world to do it), so rather than think of the what-ifs, pat yourselves on the back. You deserve.

Missy

ccsmith312 01-21-2008 06:51 PM

I remember struggling with differing opinions as well. It is so difficult when you have different doctors saying different things. I will say that I have heard wonderful things about Dr. Fay and have seen excellent before and after photos of her work. I don't know if you ever go to the MSN forum but it seems like there are many moms who have struggled with the same decision as you on that forum.

Our daughter has an upper lip H that is scheduled for surgery in March. As for opinnions we had our pediatrician saying one thing, a dermatologist saying another, and then we found Dr. Waner who recommended our current course of treatment. I think taking into account the doctor's experience with treating hemangiomas is an important factor in making your decision. That is one reason why we went with Dr. Waner.

Good luck in making your decision. I agree that gut feeling is important and also how experienced each doctor is in treating these types of lesions.

lo1 01-21-2008 07:23 PM

Hi there

We are in exactly the same position with our 6.5 month old daughter who too has an H on her eyelid and in her orbit. We have not see Dr. Fay but have emailed - again surgery is recommended. We live in the UK and they tend to have the wait and see approach which I have concerns about. My dauther had a steroid injection and oral steroids and it has not worked for her (although it does work for others) - I just dont know what to do either. Do we do what the UK doctors say and wait for a while or do we take the risk or this type of surgery not to mention the cost (although expensive we would find the money from somewhere), there is also part of me that worries constantly about her being bullied.

Did Dr. Fay explain how they would do the surgery, remove behind the eye and reconstruct the eyelid? Was there any mention of long term scars and the risks involved in surgery. Obviously if we were going down this route we would have a proper consultation but your information would be very much appreciated.

Good luck with your decision and I'm sure it will all turn out for the best.

Thanks

Lorna x

ashesmom 01-21-2008 10:16 PM

lo1 (Lorna x)

I emailed Dr. Fay's office a list of about 30 questions that we would like answered. Everything from length of time we need to be in Boston, all the surgery details, to how anesesthia will affect the flight home, scarring, side effects and etc. If you want I can email you a copy of the answers when I get them back. I only sent the questions on Thursday, but hopefully I'll get them in a day or two. I am calling tomorrow to go ahead and schedule the surgery, but I still would like all the details since we are not local to Boston either and need to take into consideration length of stay and costs involved also. Thankfully, the procedure itself would be covered under insurance.

Ashesmom

jlt71079 01-21-2008 11:08 PM

Hi,

You really just have to follow your gut. Dr Fay removed our sons hemangioma from his eyelid in October and he did an AMAZING job. He did the surgery a couple days before Brett was 3 months old and now Brett is almost 6 months and already you can't tell the hemangioma was there. We get compliments all the time how georgous his eyes are from perfect strangers. They don't even notice his scar and everytime we see someone who saw him with the hemangioma they are amazed how great it looks.

Trust me a I was a nervous wreck up until he was back from surgery and awake. Knowing what I do now I would do it all over again without a second thought. Feel free to email me if you have any questions.

Jen

lo1 01-22-2008 07:56 PM

Questions
 
Thanks for your reply - I would really appreciate a copy of the answers emailed to me - I have sent you a private message with my email address.

Thanks

Lorna x

emonaco 01-23-2008 04:05 AM

Hi,

Gosh - you are not alone! We have been in the same situation and we've opted to have Sophia's eyelid h removed in March by Dr. Reinisch in LA. Sophia is now 3 1/2 months. We've consulted with just about every doctor and every specialist on the planet and most have said wait and see with a variety of other suggestions.

Our greatest hopes have come from Dr. Reinisch, Dr. Fay, and Dr. Leviton. All three suggested a steroid injection to start and then surgery if that did not work. Our ped opthamologist also suggested the same. So, we did the steroid injection which helped in the short-term but her h is still big enough to block her vision and since there is a short window of time when it comes to vision, surgery is going to be our next step. I should say that since we've done the injection, the h has stopped growing. We don't know if it would have stopped growing anyway or if it stopped growing because of the injection.

Our pediatrion is strongly opposed to the surgery and thinks we should continue to wait and see or do oral steroids...even with everything the specialists have said!

In terms of coming to the decision of surgery, in addition to the specialists, I also talked/emailed with everyone and anyone I could find who had a similar situation and especially related to surgery as I know there are many risks involved. From everything I've learned in my research, Reinisch and Fay come highly recommended and in fact, we were planning on going to Boston to have Dr. Fay perform the surgery until we realized that Dr. Reinisch was closer to us right here in LA.

In the end, it's been the many families with their own testimony of the surgery that has helped us come to our decison. Since we have not actually gone through with it yet, we still don't know if it is the right choice. But, we feel that in our heart of hearts, surgery is the best option for Sophia for now.

I hope this helps and I will let you know how it goes in March!

Ellie

quinnysmom 01-24-2008 05:01 PM

These decisions are incredibly difficult to make and like Carrie said sometimes you are faced with so many very different opinions and treatment methodologies. I live in Canada and there is very much a wait and see approach which in the cases of very problematic and disfiguring hemangiomas can be very frustrating. We have gone through that with our son Quinn whose hemangiomas have caused great scarring and disfigurement on his face.

At this point his eyelid hemangioma has not gotten better but in fact worse in many ways because the eyelashes grow up against his eye, the eylid is scarred and has rolled forward and under. At 20 months there has also been some more growth. The ambloypia and astigmatism have gotten worse and the eyelashes cause excruitiating pain and risk scratching his cornea and losing his vision.

Now finally at 20 months his occuplastic's surgeon sees the need for surgery but it was a fight like you could not believe. He needs it now but the waiting list is one year. He is on the cancellation list so we are hoping and praying his eye is not irreversibly damaged by the time he finally has this long awaited surgery.

Best Wishes to you!

Jen and Quinn (20 Months)
www.quinnduncan.com

MOLLIE 01-24-2008 05:41 PM

Ashesmom,
I'm with missy, you have already made the best and right decision. Keep us posted!


Jen,
What a miraculous little man you have there! A true fighter! Thank you for sharing yall's story. I will be praying for a speedy surgery date for Quinn's eye and it be successful and have no complications.
Blessings to you and your family!
Mollie and Lindie (7 weeks)


All times are GMT. The time now is 01:19 PM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.