WTF Appointment

Twinkie0612 · February 2014

Well, we had our WTF appointment and I don't know what to think, except that my RE likes to throw me curveballs. So his recommendation is that we make a phone consult with CCRM. I also brought up RMANJ and he thought that we should get a consult from them too. Pretty much he thinks we need another set of eyes to look at our case and maybe they will come up with something he didn't see. He really has no explanation why despite being 31 with normal AMH and FSH, I am a poor responder to stims and end up with mostly poor quality embryos and never have anything left to freeze. The only other option he gave us was CGH testing on our embryos, which we were going to do our last cycle, but with only two embryos making it to blast it wasn't worth the additional expense to test the embryos.

So tomorrow I will be calling CCRM and RMANJ to schedule phone consultations. At first it kind of felt like my RE was giving up on us, but it am trying to look at the positive. Maybe this is what we need a new perspective on our situation.

jaztastic · February 2014

It's so overwhelming at times, but I think you are on the right track by trying to be positive. Maybe this is exactly what you need, a new perspective can't hurt. Good luck to you! Hang in there.

kz's_girlygirl · February 2014

Curveballs are never fun, but I think it's pretty great that your RE was able to be honest and say he thinks another set of eyes (and the expertise behind them!) might help you.

My levels are all normal as well, but I never have a good response either, and for our last IVF, had poor quality and a low fert rate. It's definitely tough when there don't seem to be any answers.

Hopefully you will get consults scheduled soon, and those consults will lead to conversations that help you make a plan for success going forward. Thinking of you.

MrsZ816 · February 2014

I'm sorry that you got that curveball. A new set of eyes can be really good though. I'm a patient at RMANj and so far am extremely happy. I'm local so I saw them in person for my consult though. FX that these consults get you the answers you need!

scooteriste · February 2014

Curveballs are tough but maybe there's someone out there who has experience with cases like yours and can help! Good luck with your consults.

CallaLily30 · February 2014

I'm a patient at RMA NJ as well but I'm local to their offices. So far, I'm very happy with them.

Best of luck to you! Hopefully, a fresh set of eyes will do the trick!

Twinkie0612 · February 2014

@IFinTN I've also heard of people not having a good experience with CC.RM, which is why I am leary about cycling with them. That and the cost of one cycle of IVF w/ICSI plus the ODWU is over $20,000 plus another $3,500-$7,500 for meds. It's a lot of money to spend on something that may or may not work.

poohniki · February 2014

Good luck! I hope you get some answers or really god ideas from these consults. I know RMA 'usually' does a phone consult like a regular appointment and you only have to pay your typical co-pay. Some doctors won't put phone consults through the insurance and its really expensive. Hope that you are going to be able to get the cheaper option..

Oh- and if you do ever need to fly to NJ.. Spirit airlines on Wednesdays.. Round trip Chicago to NYC is $74.

RunCC37 · February 2014

(((Hugs))) a fresh perspective certainly can't hurt. I feel like you & I have a lot of common ground (I am also 31, good AMH and FSH, not so good embryo quality). After the first two cycles, I made the switch to RMA and have a lot of confidence in their lab. If we can't get a blast in their lab, then at least we will know. Keep us posted!! Rooting for you!!!

Twinkie0612 · February 2014

Thanks @poohniki. My insurance won't cover the consultation (or at least they didn't for the last two RE consultations I've had), so I am prepared for them to cost around $250, which seems to be the going rate for a consultation.

As for flights, we would be flying out of St. Louis. I did a quick look at flights from St. Louis to Newark and prices didn't seem too bad, but I don't fly often so I am probably a bad judge of prices.

Twinkie0612 · February 2014

RunCC37 said:

(((Hugs))) a fresh perspective certainly can't hurt. I feel like you & I have a lot of common ground (I am also 31, good AMH and FSH, not so good embryo quality). After the first two cycles, I made the switch to RMA and have a lot of confidence in their lab. If we can't get a blast in their lab, then at least we will know. Keep us posted!! Rooting for you!!!

@RunCC37 at times I feel like you are my IF doppelgänger. Although I have my FX that your IVF #3 turns out better than mine!

RunCC37 · February 2014

Twinkie0612 said:

RunCC37 said:

(((Hugs))) a fresh perspective certainly can't hurt. I feel like you & I have a lot of common ground (I am also 31, good AMH and FSH, not so good embryo quality). After the first two cycles, I made the switch to RMA and have a lot of confidence in their lab. If we can't get a blast in their lab, then at least we will know. Keep us posted!! Rooting for you!!!

@RunCC37 at times I feel like you are my IF doppelgänger. Although I have my FX that your IVF #3 turns out better than mine!

Yes!!! I have thought that too, but never thought to call you my IF doppelgänger! Clever!!

Maybe RMA is the way for us both... I'll let you know in a few weeks what I think

Twinkie0612 · February 2014

geordie314 said:

Well I imagine that was quite unexpected, I hope you get some answers and a good plan from your consults.

@geordie314 - In the very least the man keeps me on my toes. I went in fully prepared for him to bring up DE or EA again and he recommends consulting another clinic. I don't know what we will end up doing, but I will at least get the consults. It's been a strange day.

Twinkie0612 · February 2014

@Geordie314 I am planning on signing up for the February seminar and thought about doing a consult with her.

I think a big part of his recommending a second opinion is because of my reaction when he brought up alternative options at our WTF for IVF #2, but he blindsided me at that appointment too. I'm not against considering DE or EA, but I am a Type A control freak planner. You can't just spring stuff like this on me and expect a good reaction.

Anyway, I think getting some other opinions is a good idea.

hmz819 · February 2014

I'm at CC.RM with Dr. Sch. He has the longest wait list but is also supposed to be the best. So far we like him. We haven't cycled yet as we were on a supplement study and I needed to take it for 3 months. I will be starting my 1st cycle in Mar. I have also heard good things about Dr. Su.rry.

Also there is a FB CCRM group and the ladies on there are pretty helpful.

I can also try and help if you have any questions.

pblge · February 2014

This sounds like good news to me! I know you expected your doc to tell you to try DE or ED, so it seems really promising (and admirable) that he's telling you that you should still have hope, but that he's exhausted his toolbox. I hope that these fancy clinics can give you good ideas. Can't wait for the updates!

Good luck!

tptbabe · February 2014

I can imagine that must have been pretty difficult to just have sprung on you like that! I'm actually really happy to hear that your doctor isn't giving up hope on you though. It sounds like he really cares and wants you to be successful if he's willing to send you to somebody else when he doesn't have any other ideas, rather than just potentially wasting your time and money with his ideas (that haven't worked so far). It makes my heart happy to know that there are doctors that actually put their patients first, rather than the almighty dollar!

jertie · February 2014

I'm glad that your RE is willing to admit that he/she is in uncharted waters & looking for help outside (that can be pretty rare with docs). I'm a patient at CCRM (local) and I've had a great experience with them as well. Like IFinTN - my doc is Dr. Brown - so when I begin stimming next week Dr. Gustofson will be overseeing my meds (haven't met him). You are right about the prices - it is expensive - but maybe they will see something. Either way you go - I wish you the best of luck!!! if you have any questions about CCRM, don't hesitate to let me know...

Twinkie0612 · February 2014

Thanks everyone. I have consults scheduled for CCRM and RMA NJ. I also am looking into our other options and have some info on the NEDC and left a message with FIRM about their donor embryo program. Right now I am just trying to figure out all of our options, so we can decide how we want to proceed.

Right now I really doubt that we will cycle with CCRM, but I do want to hear what they have to say and what kind of plan they would have for me. My big issue with CCRM is the cost. We would be putting all of our eggs in one basket cycling with them and I just don't see it being worth the risk for us. Maybe if we were earlier in our treatment, I would feel more comfortable, but we have already spent so much money on our first 3 IVFs, that we can't afford much more. I hate that finances are playing a big part in my decision making process, but it's the reality of our situation.

RunCC37 · February 2014

I think it's great that you're getting all of your ducks in a row (and wouldn't expect anything less from you!!). Keep us posted! I hope the time flies while you're waiting for your consults and suspect it will since you're going to be busy gathering information. I am so hopeful that you will find the way somehow. Hang in there, Twink!!

babydreams13 · February 2014

I don't think my RE knows what to do with me either. I am young too- 32- and unexplained. He is surprised himself that nothing has worked after all these treatments. So I decided to go to SIRM in NYC. I had a consult last week. CThe RE gave me options of different tests. I think I may change just for a new set of eyes and a new lab. I can't justify staying with my old RE just because I like him.

I think you doing consults with other practices is the right move at this point. I hope you get some answers,

beachy6 · February 2014

We had a phone consult with CC.RM and Dr. Sur.rey. I needed a fresh set of eyes, too. He did recommend some things that we hadn't done, but he was very honest that the reason they are so successful is because of their lab. We are using some of the supplements he suggested, as our RE also wants us on them. I've also been hearing more horror stories lately, more horror stories than good stories unfortunately.

Also, the cost of the phone consult is free to some people depending on the state where you reside. I'm in Ohio and it is illegal to charge for medical advice given over the phone, so our phone consult was free. Not sure how it would be for you, but this is an option for some women, too.

keziah23 · February 2014

I know your RE

and I have to say it makes me feel better that he told you that, I think it takes a good doctor to say that someone else needs eyes on a case too. Good luck!!

pblge · February 2014

Can I ask a dumb, off-topic question, please? Why are people putting periods in the middle of these names?

Sheepishly exits.....

poohniki · February 2014

I think it's so that if that doctors name is googled, this post won't pop up. (My guess anyways)

Twinkie0612 · February 2014

IFinTN said:

Can I ask a dumb, off-topic question, please? Why are people putting periods in the middle of these names?

Sheepishly exits.....
Never know if the clinics are watching the boards. I know mine specifically makes a point of saying they think blogs and boards cause trouble because patients get freaked out when their treatments are different. So yes, what @poohniki says, just trying to keep the conversation here and not searchable.

Yup. I try to remember to do this with clinics, doctors, pharmacies, etc. I don't always remember though.

LeggyJeggy · February 2014

I'm sorry Twinkie, but I guess it's good that your RE is honest about getting second and third opinions. I'm very similar to you and my RE had me do the clomid challenge test in December. My day 10 FSH was 14.6 which explains my poor response to meds. Have you done that? I'm only 30 as well with all other bloodwork normal but my RE calls my ovaries 40+.

tilelady85 · February 2014

Hang in there, I hope you find your answers and success soon! I just wanted to chime in on what others have mentioned. I am also an RMA girl and I cannot say enough good things about them. Their doctors, labs, and research teams are some of the best in America.

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