CCRM vs SIRM (which location?!) vs local RE--advice welcome!


#1

Hi! I am looking for advice on which clinic to turn to next.

After 8 plus years TTC doing everything but IVF, we finally finished our first round of IVF in November. This site, and specifically these forums, were a life saver for me getting through this. It is frustrating navigating the sea of information and so many people on here have been so helpful, I’m hoping for a little more input!

Through my IUI rounds, and through this IVF round, I have been a poor responder. I did the long Lupron protocol on 450 IU of stims. I produced 6 follies and got 3 eggs (only 2 mature) at retreival. One of those fertilized but had 4 pro-nuclei. My E2 was very low throughout the cycle. I also seem slow to develop the follies.

My AMH is .77. My FSH levels have been normal. I am 37 and have never been pregnant. I have endometriosis and had lapro in 2010 to have much removed.

My local RE has said that he will try whatever protocol I want to try but won’t go to retreival with me again with that kind of response. Long story short, I feel that he is trying to protect his IVF success rate and lacks experience with DOR patients.

I am going to interview at least one other local RE (I live in KS and the RE’s I’m considering are in the KC area. The one I’m with now is at RRC.)

But it’s time for us the “throw the book” at this as it were and we are considering CCRM and SIRM.

Because of options of free places to stay, I could go to CCRM, or the SIRMs in Dallas, St Louis or Peoria and stay somewhere for free which would help out.

some of my independent research has turned up some people saying CCRM isn’t great with DOR patients. And I’ve also read that really all the SIRM clinics are different.

So I’m wondering if anyone has any helpful insight or experiences with CCRM, SIRM or REs in Kansas City, that would be helpful to us in deciding where we go next?

Thank you all so much in advance for any advice you have for us!!!


#2

Hey Buttercup,
I can’t give you first hand advice with DOR but I thought I would chime in to suggest maybe you can set up some phone consults as a start? Get a copy of your medical records and send them off to both clinics and talk to them. I think you can get some good information or at least a gut feeling with a phone consult. Good luck and keep doing all the research you can. I think there are a few DOR/poor responder threads around, maybe you could check those out too?


#3

Coming from a fellow DOR’er I would not go to SIRM. Never did go to CCRM but heard they are very expensive and although they will treat DOR patients if the stats are too bad they will try to push DE. I used SIRM Las Vegas for 2 cylces and while I liked the facility and Dr. Fisch they DO NOT individualize there protocols like they say they do. They use there agonist/antagonist on just about everybody, and the only variation is they add EPP with it for poor responders, DOR, and AMA patients. With DOR I would find a doctor that deals with it alot such as Cornell, Cooper Center, and CCRM. Despite what SIRM says they do not get the bulk of DOR patients the above clinics do. Also find a doctor that does not set limits on retreival it is your chose if you want to get 1 or 2 not the doctors. At the end of the day a local clinic should be able to think outside of the box and try different protocols etc. if not find one that does.


#4

I am a DOR patient and cycled at CCRM. I had one succesful cycle there. My 2nd cycle was a BFN. I am currently in my 2WW for my third cycle. They do not turn away DOR patients, or at least they have not me; I am 34 and and my FSH is 32. My AMH is .2. They do tell you that your chances are better with donor eggs, etc., but really anyone requiring IVF has a better chance with donor eggs. I think they have started becoming even more FSH friendly, or at least that is what I have read on these boards.

I have heard a lot of negative things about SIRM. I consulted with them and I just did not feel right about cycling with them. With DOR, the other guru is Dr. Davis at Cornell.


#5

[QUOTE=b&a72]Coming from a fellow DOR’er I would not go to SIRM. Never did go to CCRM but heard they are very expensive and although they will treat DOR patients if the stats are too bad they will try to push DE. I used SIRM Las Vegas for 2 cylces and while I liked the facility and Dr. Fisch they DO NOT individualize there protocols like they say they do. They use there agonist/antagonist on just about everybody, and the only variation is they add EPP with it for poor responders, DOR, and AMA patients. With DOR I would find a doctor that deals with it alot such as Cornell, Cooper Center, and CCRM. Despite what SIRM says they do not get the bulk of DOR patients the above clinics do. Also find a doctor that does not set limits on retreival it is your chose if you want to get 1 or 2 not the doctors. At the end of the day a local clinic should be able to think outside of the box and try different protocols etc. if not find one that does.[/QUOTE]

I’m not sure where you are getting your information from…but you are wrong about SIRM. I know several DOR patients that have had success in Las Vegas. Also…people need to be clear not to lump all SIRM clinics together. Take a look at the SART stats and see just how many DOR patients SIRM handles. 54% of SIRM NY’s patients were DOR in 2009, and 41% in 2008. By the same measure, Cornell treated 27% DOR patients in 2008 and 2009 and CCRM 36 % in 2008 and 41% in 2009. In addition, SIRM treats patients with immune issues…not something the others do. I am a patient in the SIRM-NY office. My Dr has gotten this 44 year old pregnant three times…at the age of 44. I post a lot of places with a lot of older gals…and I can’t say that anyone has had even close to the same outcome as me…in terms of quality of cycle and implantation…and this is also with high FSH. This is not to knock CCRM or Cornell…I think both are amazing institutions and frankly…you can’t wrong with either. Although I love SIRM, when people ask about whether they should try CCRM or SIRM, I do tell them to try CCRM first…mostly because their lab is probably the best in the country. If you unfortunately do not find success there, try Cornell or SIRM. JMHO. Just wanted to clear up your comments.


#6

Selecting a clinic comes down to 1 big thing live births per transfer, and I am assuming the original poster would like to do IVF with her own oocytes. If you break down the clincs by age group and diagnosis the live birth rates are SIRM-NY 3/15 live births, Cornell 13/40 live births, and CCRM is 11/26 live births. All 3 clinics transfer on average 2.5 embryos. I am happy for you and it is awesome to see another DOR’er get pregnant and prove the neisayers wrong but in your case you transfered 5 blasts and most doctors would not do that especially in the original posters age group. Be as informed as possible and do consults with all 3 look at the stats and go from there imho.


#7

My advice would be to go to Cornell if you can. I am currently going there, and went to CCRM for my last cycle where I personally did not have a good experience as a person with DOR. I hear good things about Dr. Tortoriello at SIRM-NY, and a think I’ve heard about a good DOR guy at SIRM-St. Louis (maybe Ahlering?).

As to b&a72’s point, I think we have to be cautious looking at the “live birth” rates as these are [I]per transfer[/I]. CCRM tends to push embryos to day 5, and strongly encourage genetic testing, so much of what they are transferring are day 5 normal embryos, which are of course going to result in pregnancy more often. It does not account for those whose embryos were pushed to day 5 and don’t make it, or did not have any “normal” embryos. Also, SART stats are from 2009 and earlier, and what I’ve heard is that at that time, CCRM had a significantly lower FSH cutoff (clinics have different definitions of high FSH, which may reflect in stats of what percent of their patients have DOR).

I’m not saying that many people aren’t happy with their care at CCRM (and you can find a lot of them on this board). Just providing a counter point from my own experience.


#8

So basically 20%, 30%, and 40%.

That makes sense. CCRM is one of the clinics with very high success rates. Few clinics can compete with those rates.


#9

[QUOTE=b&a72]Selecting a clinic comes down to 1 big thing live births per transfer, and I am assuming the original poster would like to do IVF with her own oocytes. If you break down the clincs by age group and diagnosis the live birth rates are SIRM-NY 3/15 live births, Cornell 13/40 live births, and CCRM is 11/26 live births. All 3 clinics transfer on average 2.5 embryos. I am happy for you and it is awesome to see another DOR’er get pregnant and prove the neisayers wrong but in your case you transfered 5 blasts and most doctors would not do that especially in the original posters age group. Be as informed as possible and do consults with all 3 look at the stats and go from there imho.[/QUOTE]

Which year are you looking a because SIRM-NY was #1 in NY…yes…beating out Cornell in the 41-42 age group and #3 in the country in that age group in the 2008 SART stats. They were also #1 in NY in the under 35 age group in that same SART report…yes…once again beating our Cornell. So pick a year and you will get different results. In 2008, the live birth rate at SIRM NY in the 41-42 age group was 35%, Cornell-17.8 % and at CCRM- 30.9 % in the 41-42 age group. So if we had this conversation prior to the last SART report coming out, SIRM-NY would be the obvious choice right? Clearly, SIRM-NY is no slouch when it comes to treating women in the OP’s age-group which is why I disagreed with your statements. IMHO…you need to look at the historical data as many people’s ratings took a dive in 2009…including CCRM’s. You also need to bring the conversation back to your point that SIRM allegedly does not handle DOR patients when clearly…they handle percentage wise in terms of the number of cycles they do…the most.

As for CCRM…of course their live birth rates are higher than most…they are primarily steering women with any sort of issue or that are older to do genetic testing. They are therefore only transferring normal embryos for the most part!! That is a tremendous advantage that they have over most programs. In a lot of ways, that any clinic can come even close to their stats is pretty amazing.

As for the # of embryos I transferred…the point is…try finding very women my age with 8 blasts on Day 5…you will not find many. That did not happen by happenstance. That is because of protocol and a great lab.


#10

Her post was exactly accurate.

Like she said, she broke it down by diagnosis. The OP referred to DOR, so the relevant statistics were for that diagnosis. The SART page allows you to select the statistics for each diagnosis and age group.


#11

[quote=classc_1]
As for CCRM…of course their live birth rates are higher than most…they are primarily steering women with any sort of issue or that are older to do genetic testing. They are therefore only transferring normal embryos for the most part!! That is a tremendous advantage that they have over most programs. In a lot of ways, that any clinic can come even close to their stats is pretty amazing. [/quote]
Ditto what Ghost said. The OP’s question was about DOR specifically, so it would be most helpful for her to look at SART data filtered for those categorized as having DOR. Also, the OP is 37, so the relevant age group is 38-40, not 41-42 (I am assuming she will be 38 at the time of delivery). I have not looked at those stats, but I believe that is what b&a72 was trying to do and why she may have come up with different numbers.

In any case, I just wanted to clear up one point. Genetic/CCS testing at CCRM requires an FET because it takes weeks for test results to come back. Therefore, the SART live birth rates that you looking at from “fresh embryos from non-donor oocytes” do not reflect or benefit from those who have had CCS testing done. Instead, they are buried in the “thawed embryos from non-donor oocyctes” stats, which also reflect those who have done an FET [U]without[/U] CCS testing.

This is only one year’s worth of data so far, but below CCRM breaks out their 2009 stats for those who did CCS testing and those who did not. For the 38-40 age group, the live birth rate is 59% with testing and 42% without.

2009 IVF Success Rates

I do agree with boston78’s point, however, that CCRM encourages those with six or more fertilized eggs to push to blast and therefore the live birth rate without CCS testing does not reflect those who end up with no blasts to transfer. However, for those who end up with fewer than six, CCRM usually suggests a day 3 transfer without CCS testing or day 3 CCS testing with an FET later, and those stats are captured in the SART data.

Buttercup5 - I would definitely try to set up phone consults with as many top clinics as you can. It doesn’t make sense to me why your RE put you on the long lupron protocol if you have DOR. You also mentioned you have endometriosis. Have you had the beta-3 integrin biopsy done before? It is controversial, but the doctors at CCRM believe that the lack of the integrin can lead to implantation failure/early pregnancy loss, and many with endometriosis are missing the integrin.


#12

[quote=Ghost]Her post was exactly accurate.

Like she said, she broke it down by diagnosis. The OP referred to DOR, so the relevant statistics were for that diagnosis. The SART page allows you to select the statistics for each diagnosis and age group.[/quote]

Ghost and pumpkin hit the nail on the head, and I was looking at the SART 2009 stats. Like I said before it comes down to live births per transfer a clinic can treat 100% DOR patients but if 1 out of 50 cycles results in a live birth that is not very good stats. I understand that they got you pregnant so you would be partial to them but I was just trying to break down the numbers on clinics for the original poster. The OP also never mentioned SIRM-NY she mentioned a couple of the other SIRM clinics two of which do not share there stats with SART and the one that does has a dismal 0 out of 3 cycles live birth rate for her age group and diagnosis.


#13

Hi everyone. I am so sorry that after posting this question and receiving so many helpful results I have taken this long to reply.

I read your advice and then started doing some more research of your own and then had a complete breakdown. Not a “hospitalized” level breakdown, but a “take a day off work” breakdown and had to just step back for a bit. I’m not sure why it hit me so hard. I had to tell so many people about this cycle bc I was around them during shots, or taking time off work. So when it didn’t work I had to tell many many people and I think I felt like I had to be strong and positive for them but it must have caught up to me!

Anyway, I have now recovered!=)

I wanted to thank you all for your responses. This is exactly the type of info I was looking for. My DH and I have made a decision of what to do next and I wanted to share.

We have ruled out CCRM at this point, just because of the cost. I have decided to do a phone consult with SIRM St Louis and in the meantime try another round with my current RE.

I’m not sure how I feel about doing that, but I have med coverage and my meds cost about $100. So if it doesn’t work out we are only out the $100 plus the cost of the US’s. So comparing that to the travel etc during the MW winter I think it’s worth a shot. He told me he’d try any protocol I wanted to. I know he won’t go to retrieval with only a couple of follies again, but at least I can experiment a bit and see how I respond to different protocols.

So thank you again for all your responses. They were very helpful in navigating this decision. Wish you all the best of luck and happy holidays!!!