Painful decisons

I heard from Dr. Yakes office on Monday morn. Not the news I wanted to hear. They confirmed that Madison does have avm of the mandible/bone. The dont know how much of the bone until they do an angiogram. Even though I know Dr. Yakes is one of the best I wanted them to say that Maddys avm was not that bad and that they didnt feel the need to see her. That is not what they said. I prayed everyday for that and my prayers didnt work. All week long I have been so torn as a mother having to make these decisiions. Do I leave it alone until it becomes symptomatic with the hopes that it never will or do I be pro active instead of reactive…I want to curl up into a ball and hope when I wake up that this nightmare is over. Tonight I made my two closest girlfriends come over. We talked over wine of course and I had them ask me questions they would ask if this was there child. I had hoped that I had forgotten something. But everything they asked was things I have already researched. I know if I leave it alone and it never reacts that Madison will probably not have her own children. That bothers me. I also know that if I dont do anything Madison is unevitably still gonna have a problem when her wisdom teeth come in. I know if I dont do anything that it will be like living with a ticking time bomb. Wondering if and when she will bleed and what if she gets hurt or someone hits her and what will happen when she hits pueberty. Does anyone know how many people Dr. Yakes has cured. I know he has a 70% cure rate but how many people is that? What are his medical statistics. Can anyone help clarify what I should do. I know as a person I am a preparer and I cant just fly there and have madison have a treatment. I know I have to fly there see the facility, meet him and his staff and ask a ton of questions. I think that is what I should do. Can anyone help. I love all of you you have all become like family. Thanks for listening to me vent.

Wow. I didn’t realize you had to fly there. (I live in Canada) Maddy’mom, somehow, you have to find your “thankful”. You have to look at this and find some things to be thankful for, however difficult and impossible that seems. Imagine if there wasn’t a Dr. Yakes who has an optional treatment to help you. You have caught it early and can benefit from others who have gone thru the treatment much later in their AVM’s progression. You are an intelligent person and that will be a huge help.
Can you email Dr. Yakes a list of some questions like the one you asked above? I’m sure he must understand how you are feeling so confused and afraid. I AGREE that you need that first trip to investigate this more and when you meet these people, you will get closer to your decision. And let Maddy ask her questions as well. Listening to her will help you along in the decision. Do you know what percentage of the facial AVM’s DO grow?
Can you really live with doing nothing and waiting for whatever might happen? Can you truly live like that? Just keeping taking these steps and find out more info. That is the only way you will know at the end what to do. You’re just not there yet and that is why you feel like you are going crazy. I’m a planner too and when you get your next step of this journey straight in your head, you will be able to go forward. You’re still gathering your information. It’s not time yet to make the big decision.
I feel so bad for you. My thoughts are with you again. I’m sure Shalon can help to guide you thru this too.

I totally agree with Joy. Talk to Shalon and to Camellia’s mom (Sorry, I just blanked on her name, But Shalon can help you with that as well.)

you have the right idea about asking questions. the most important thing is that your have a good relationship with your doctor!

Ah, the questions we ask ourselves… (Been there, done that, have the tshirt, etc)

Our experience with multiple specialists is write down your questions as you think of them and take them with you to the next appointment. Before we’d go to a specialist, we’d have written out our questions, and made a copy for each of us. Then we’d write down what we heard as an answer. As soon as we got a break such as the DR stepping out, we’d compare answers. Any misunderstanding between us, we’d ask the DR to clarify when he returned.

Drs might be coming around to using email, so you could send them ahead, but I’d want to see face to face how he or she is answering each question. I don’t think they mind (most of them) answering questions, especially if you have clear questions, rather than just going off the top of your head.

I would caution you though, as has been our experience, that as you go HIGHER in the specialty field, the DRs can become more “unique” or have less bed-side manners–ok, the right word is antisocial. These guys typically are so smart, their people skills are less. We just learned to deal with it and got through ok.

One of the questions that seemed to help us, after hearing multiple options/risks, is “Dr, if this were your child or wife, what would you recommend?” Most who responded to this would pause, then offer their opinion. It seemed to take them from the academic answer to a human answer.

Our best Wishes,
ron, ks

Hey Sherri-

Ditto to what everyone else said. Ask your questions, it is the only way that you are going to have peace with the decision. And we talked the other night, you know my thoughts and feelings (as biased as they may be!) on the whole situation. As far as statistics, that part is impossible to really answer. What I can say for sure is that Dr. Yakes is not part of a large university hospital, or one that is hugely involved in research and grants and staff and all of that other stuff that provides the “resources” for him to constantly publish reports and statistics. He is the President of the ISSVA and very involved in the Vascular Anomaly community. And of course as we talked, we don’t “know” about those people that are never affected…cause they aren’t part of the group of people needing treatment. Just impossible.

Ron mentioned the “unique” bedside manner that some of the “great” doctors have. And I totally agree that this happens. But honestly, that is not the case with Yakes or his staff. I know that you have already experienced that a little over the phone. And that may help your decision when you and Maddy meet them in person.

As a side note- Julie called me today to check on how I was doing from last week. She is of course lovely to talk to EVERY time. She doesn’t just come across as making that “necessary” follow up call, but genuinely seems interested and concerned in how SHALON is doing. We chatted for a good 15 minutes and she remembered to ask me about a weird bruise I had mentioned to her last week. She has always made me feel well taken care of, and that they are absolutely interested in getting me better in every way that they can support.

You asked me earlier about my routine, the swelling, ect. What “would” Maddy experience. And while ever person and every treatment is different, I will tell you that today is one week exactly from treatment and I have virtually NO swelling left. It really was mostly back to normal on Tuesday, which is only 5 days. And Maddy may not swell as much as me, cause let’s face it, hers is smaller to begin with.

Anyways, I’ve totally rambled. Bottom line, do whatever you need to do to feel comfortable with your decision. It really sounds like that is the struggle you are currently having. Being comfortable in taking the right course. And I don’t know how to help you with that other than to be able to answer any question you can throw my way, and to encourage you to see Yakes, the hospital, the staff…all of that.

Hang in there! You are doing exactly what you should be right now. And I know that Maddy knows this and absolutely appreciates all of the dedication you are putting into making this work for her for the best!

Let me know of any way that I can help!

Hello Sherri…it is so hard to be the mom and have to make all these huge life changing decisions for our children. I also agree with the others…ask, ask, ask until you are comfortable and feel in your heart you have all the information needed to make the best decision for your daughter. Knowledge is power and though you will never know how everything will turn out, you have to have faith that you did everything in your power for your child and then give it over to God…even though it may not be the answer/outcome we are looking for…he has a greater plan for us all and be assured he will hold your daughter in his arms through all of her treatments and recovery…and cradle you as well to give you the strength to see her through all that is to come. Take Care and best wishes to you and your daughter!

You have a right to ask the questions. Too often we’re intimidated by the doctors!

I don’t know what to say, but I wanted to let you know I feel for you. Being a mom is huge sometimes.

Hi Sherri, yup as everyone says ask everything and anything and then some. Take care and i’ll keep you both in my thoughts and prayers.

Ill be praying for you just hang in there and i know praying seem to never be answered sometimes just have faith hang in there. It will be answered .