my ccrm consult...

mm29

DH and I spoke with Dr. Surrey.   He began by giving us 80% likelihood of getting knocked up with donor egg (seems like a really high, possibly an inaccurate or inflated number).  He feels that I should have more testing completed before moving on with IVF using my eggs to find out why I have DOR.  He is in disbelief that I haven't been tested for fragile x and highly recommends I have that done.  He also recommends karyotyping, and sperm frag test. (I'm guessing they recommend this to everyone)

 

He went on to say that it was a good sign I had an embryo grow to blast, but feels that I should have ccs testing on any embryos in the future. He recommends an "improved protocol? most likely testosterone priming for one or two cycles.  Bank all the embryo's and when I have a good number of embryos (I have no idea what that number would be) move forward with CCS testing with our embryos. He believes that if are Embryos are normal we have a 60% chance of getting pregnant with less than a 5% chance of MC.  

 

DH and I have talked.  I am still not sure if we should do another IVF with my OE's.  However, we would like to go there for the ODWU and see what ccrm finds.  If I am not a carrier of fragile x I think we may move forward with IVF.  If I am a carrier of fragile x we will move onto DE--Locally. 

 

What I'm scared of is moving forward with IVF using my OE's, not having success. Then waiting another 5 years to cycle with a DE, since we are oop it will take us that long to pay off the horrific debt. According to all the REs I've ever seen there is no limitation on age using a DE, so I guess I have that going for me

 

I wish I had a crystal ball!!!

PurpleIris30

Always good to have more information at your disposal, even if it would be even better to just have the crystal ball.

I think the fragile x testing sounds like a good idea.  For me, I guess I'd be thinking of how many fresh cycles it would take to get enough embryos to do CCS testing (and would he do a transfer without CCS testing if you didn't get enough embryos in just one cycle?), and weighing the cost of multiple OE cycles with the cost of DE.  As someone who is also OOP, I can relate to the agony of it taking years to save for a cycle (or multiple cycles as the case may be), especially with the added cost of genetic testing.  I wish that money didn't have to play such a large role in our decisions.

AmCheri

I'm afraid that I can't offer any help.  We were OOP, too, and that definitely factored into our decision-making process.  The testing you're having done seems very reasonable.  These are tough decisions, no matter how you cut it. And sometimes making the next decision takes a gigantic leap of faith.  I really hope you get more info that will help your next step seem more clear. Hugs. 

zazu13

I wish I had a crystal ball, too! Good luck with whatever you decide. What is Fragile X and why do they suggest testing for it? I've had lots f tests done but I don't know about this one.

DoublePortion

Going for at least the ODWU sounds like a good plan since they are so thorough in their testing. I wish the choice was clear for you and you knew just what to do. I've said it many times, but one of the worst aspects of IF is the not knowing what choices are best. It just sucks! I hope whatever path you take it doesn't end up being 5 years before you get a take home LO.

rockpaperlove

I def say go for the workup!  It is pricey, but you may be able to tailor some of it to save money.  We did everything and it was not cheap, but we got so many answers out of it so we believe it was worth every penny.  We got answers that should have been dx'ed a long time ago, but that is another story.  This clinic leaves no stone unturned.  I have been very happy with my experience so far. 

BzeetyD

I'm glad it went well, I'm sorry that there isn't a crystal ball. DE at our even our home clinic has a similar percentage of working - 70-80% which is incredible. Fragile X testing and karyotyping is smart. Both are bloodwork and we had ours done locally and CCRM accepted our results. You could look into that. Having done before your ODWU would take some of the heft out of that day. Time is the difficult factor for us as well, by that I mean that "wasting time" going through options would be so terrible. But I think for us, it's a process that needs to happen. If you do a ODWU, you could still choose to cycle with DE instead. I'm hopeful that you'll have a good outcome eventually.

liz4paws

Wow, sounds like you had a good meeting and you are getting a plan together nicely. I really hope that his percentages are not inflated and you do indeed land on the positive side of them when you've finished your cycle. FX that everything goes wel for your ODWU.

hootie123

I feel the same way about the crystal ball!  GL with your ODWU!

mm29

rockpaperlove:

I def say go for the workup! nbsp;It is pricey, but you may be able to tailor some of it to save money. nbsp;We did everything and it was not cheap, but we got so many answers out of it so we believe it was worth every penny. nbsp;We got answers that should have been dx'ed a long time ago, but that is another story. nbsp;This clinic leaves no stone unturned. nbsp;I have been very happy with my experience so far.nbsp;

may I ask how much it cost you? If you Are uncomfortable can you pm me? I have a hsa just wondering if I have enough to cover it.

mm29

zazu13:

I wish I had a crystal ball, too! Good luck with whatever you decide. What is Fragile X and why do they suggest testing for it? I've had lots f tests done but I don't know about this one.

"Fragile X syndrome is a genetic condition involving changes in part of the X chromosome. It is the most common form of inherited intellectual disability in boys of these problems are present at birth, while others may not develop until after puberty." "Some Family members who have fewer repeats in the FMR1 gene may not have intellectual disability, but may have other problems. Women with less severe changes may have premature menopause or difficulty becoming pregnant. Both men and women may have problems with tremors and poor coordination."

 

The good news is that there are no people in my family who are mentally handicap.

rockpaperlove

Brace yourself: 6973.54! That excludes our travel cost and lap cost of 3, 657.17, but we are OOP and we had a very extensive workup. I think 4,000.00 is a bit more standard.

BzeetyD

rockpaperlove:

Brace yourself: 6973.54! That excludes our travel cost and lap cost of 3, 657.17, but we are OOP and we had a very extensive workup. I think 4,000.00 is a bit more standard.

Ours was closer to 4,000 - but some of those procedures got run through insurance as being diagnostic, which is sometimes covered for us.

mm29

BzeetyD:

rockpaperlove:

Brace yourself: 6973.54! That excludes our travel cost and lap cost of 3, 657.17, but we are OOP and we had a very extensive workup. I think 4,000.00 is a bit more standard.

Ours was closer to 4,000 - but some of those procedures got run through insurance as being diagnostic, which is sometimes covered for us.

hmm, my insurance will not cover any of the costs. I requested the max amt this year from my health savings act. I think it is 5k, but it's not all available to use at this time. I'm going to need to contribute more from here on out.

mm29

BzeetyD:

rockpaperlove:

Brace yourself: 6973.54! That excludes our travel cost and lap cost of 3, 657.17, but we are OOP and we had a very extensive workup. I think 4,000.00 is a bit more standard.

Ours was closer to 4,000 - but some of those procedures got run through insurance as being diagnostic, which is sometimes covered for us.

hmm, my insurance will not cover any of the costs. I requested the max amt this year from my health savings act. I think it is 5k, but it's not all available to use at this time. I'm going to need to contribute more from here on out.

mm29

BzeetyD:

rockpaperlove:

Brace yourself: 6973.54! That excludes our travel cost and lap cost of 3, 657.17, but we are OOP and we had a very extensive workup. I think 4,000.00 is a bit more standard.

Ours was closer to 4,000 - but some of those procedures got run through insurance as being diagnostic, which is sometimes covered for us.

hmm, my insurance will not cover any of the costs. I requested the max amt this year from my health savings act. I think it is 5k, but it's not all available to use at this time. I'm going to need to contribute more from here on out.

kflynn81

Oh yes, crystal ball for me too please!!!

Glad to hear you had a great chat with Dr. Surrey....sounds like you have lots to think about.

Good luck!

joules12

Just sending some more good wishes your way, mm!  As I said before, I agree that doing the ODWU (even thought that $ is sooo ouchy!) sounds like a good idea.  FX that its results provide some solid insight to guide your next steps.

UMichGirl

***Siggy warning***

Hi mm...I've been wondering how things have been going for you, and I'm glad to hear your phone consult with Dr. S went well!  As you know we went there (and he was my doctor) and I have nothing but great things to say about them.  Definitely do the ODWU if you can swing it.  When we started off he gave us not-so-great odds (but way better than any local doctor who basically said we had NO chance)...and as my cycle with them progressed he kept upping our odds based on how things were going.  Lo and behold, success!

Hope you don't mind me poking around in here to see if you've updated!  Fingers crossed, and good luck with whatever you decide!!

yodasmistress

SAIF response

My son is from a CCS normal Embie. We did two cycles to try to "bank" normal embies.

I think the 80 and 60 odds he gave sound about right.

I think our first ODWU in 2009 was around 4K but when I went back this past November it was closer to 2K probably because I didn't have to do as much and DH only communicables since it was for a FET.

I can't recommend CCRM highly enough. ALMOST all the women I know who cycled there found success. And if they don't think they will help you find success they will DEFINITELY tell you. I have not really see them "blow smoke" when it comes to discussing prognoses with folks.