Monday, August 24, 2009

Miscarriage wizard: any recommendations?




WANTED: RECURRENT MISCARRIAGE SPECIALIST
Increasingly desperate married white female seeks obstetrical wizard who specializes in recurrent miscarriage. Willing to try conventional as well as unconventional approaches to try to determine causes of the demise of multiple first trimester pregnancies, as well as to find solutions to prevent a sixth such loss. Willing to invest a significant amount of her dwindling savings (although insurance would be nice!)for right match. I offer well-reasoned questions, excellent (if increasingly caustic) SOH, and impressive patient compliance. Interested parties please contact at moandwill@gmail.com.

I first heard the term "wizard" used in a medical context by my oncologist several years ago when he and a team of surgeons and a big ole academic tumor board thought my cancer had recurred. Which would have been REALLY bad news, potentially deadly news. My oncologist turned to me and in his kind but honest way said, "Sometimes, Mo, you're at the point where you need a wizard, and I think that time is now." He said he was not qualified to provide the advanced care I would need and he proceeded to give me two names: one at Memorial Sloan-Kettering in NYC, and one at Stanford University in Palo Alto, California.
Through an amazing turn of events, two weeks later it was determined that I HADN'T relapsed and DIDN'T have to have a bone marrow transplant. Which left me enormously grateful, not to mention thoroughly shaken up and feeling as though I'd had a brush with the great beyond.
But it introduced the idea of "wizards." And I think that's where we are at with this miscarriage situation. I just can't keep doing this. I can't keep losing baby after baby. I need to find out how to stop this from happening over and over again (Two losses were chromosomal, but we're not sure about the rest). It is not good enough anymore to hear that it is bad luck. It is not good enough anymore to hear that my risk of miscarriage is similar to any other 37 year old (which is what the genetic counselor told us the day before we found out our latest baby had died). I don't believe it. And I can't just keep hoping something different is going to happen. I can't. We've had the standard miscarriage work up (all negative - no clotting issues, no nothing) and I've been seeing one of the top REs in the country.
I just keep thinking there must be an answer out there. And so I turn to you all, and your enormous base of knowledge. Does anybody know Who's Who in the world of recurrent miscarriage specialists? I'm actively seeking any and all advice. We'd like to keep it to the East Coast/Mid-Atlantic region, but if you know of someone further afield, I'd be interested in hearing about them too. Anybody who would take a long and detailed look at our situation, be willing to think outside the box.
A wizard, people. That's what we really, really need. Do you know one?
Mo


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38 comments:

Erica said...

There's a woman from the University of Pen.nsylvania - Dr. Garc.ia - who specializes in pregnancy AFTER women have undergone cancer treatments. Didn't love UPe.nn at all for my scenario, but they are a fantastic group of docs for serious medical issues. She was on the cover of Top Docs 2008/9 (can't remember which one) for this area. I live in Southern NJ.

Thinking of you and wishing you lots of luck in your wizard search.

Leigh said...

Hello dear Mo

I don't know how you feel about contacting a lab in South Africa.... but I have a friend who has had 6 miscarriages and who is now about 18 weeks pregnant after trying some new protocol at my fantastic clinic that got me these twins.

If you want to, you could always email Dr Gobetz at http://vitalab.co.za and if he's agreeable send through your reports and arrange a telephone consult. We are 6 hours ahead of you so probably 10 am to 12pm will work best.

Praying that God leads you to the right person.

P.S. I honestly believe that God led us to Dr G at the right time and that's why we have our twins today.

Email me if you want to chat XXX

DAVs said...

I know you've already considered this, but are they doing genetic testing on the babies to see if there are specific reasons chromosomally for the recurrent miscarriages? In that case, could CGH testing help?
I wish I had more...but thinking of you.

Kathy said...

Dr. Mary Stephenson Director of the University of Chicago Hospital's Recurrent Pregnancy Loss program:

http://www.uchospitals.edu/physicians/mary-stephenson.html

Though I haven't met with her myself, I know a number of women/couples who have and have been very impressed with her knowledge. I hear she is very thurough in the tests she runs and has a lot of experience and has done a lot of research in this area.

I hope this helps and best wishes to you!

Eileen said...

Unfortunately I can't help you with east coast clinics. But I do know 3 people who have gone to this clinic in Southern CA who have gone on to have successful pregnancies after numerous losses. I am thinking about trying it if this pregnancy isn't viable:

http://www.scrcivf.com/html/fertility.html

SassyIfLady said...

I've read some about the Cohen Center in Dallas: http://www.briancohenmd.com/Infertility%20and%20Recurrent%20Miscarriage%20Treatment%20at%20Cohen%20Center.htm

Pauli said...

I know it is quite the investment, but Dr. Schoolcraft at Colorado Center for Reproductive Medicine is amazing at what he does. http://www.colocrm.com/

My best wishes to you!

Michelle said...

I have been searching for these myself. If you find any that are viable options let me know.

I really hope you get the answers you so deserve!

Phoebe said...

I'll step out on a limb here and offer the unconventional, at least from a western approach. Have you considered consulting with an acupuncturist/Chinese medicine doctor? Find an acupuncturist who specializes in recurrent miscarriage. Many REs recommend acupuncture in conjuction with IVF. If the problem is genetic, I'm not sure that Chinese medicine is going to help you though. Some alternative doctors believe that certain supplements can help with damaged DNA, such as wheatgrass and chlorella.

Dora said...

Glad to see others have suggestions for you. Wish there was something concrete I could do. Thinking of you.

Dora said...

The only suggestion I have would be to also ask for recs on IVFC. That's where I got the rec for the hematologist I saw for clotting and immune testing (precautionary, prior to cycling). He's great, but he's not a miscarriage specialist.

glamcookie said...

I just had to follow up on Eileen's recommendation to the Southern Cal Reproductive Center. I started there with Dr. Danzer and found him to be very lax and unmotivated to get me pregnant. After 6 tries with him, I switched to another clinic where they had me do an HSG (Danzer never had me do one) and discovered I had a blocked tube. My new RE also discovered a large fibroid that was never mentioned previously. Just had to caution any out there looking for someone in SoCal. Perhaps others at that clinic are great, but I had no luck with Dr. Danzer at all. I did IVF with my new RE (Dr. Rudy Quintero in Glendale) and got pregnant both tries at his office. First ended in miscarriage, but I'm almost 22 weeks with the second.

Hang in there, Mo. I sure hope you find your wizard!

Anonymous said...

Did your recurrent miscarriage work up include karyotyping for both you and your husband? Translocations are thought to cause recurrent miscarriages.

Mo and Will said...

Anonymous,

Good question. Yes, our karotypes were checked and are normal.

Mo

Sassymama said...

Wish I had a good recommendation for you, but I don't. I am glad to see you have been given a few leads.

Just cheering you on!

'Murgdan' said...

No advice....but sending out wishes to Oz that you find your Wizard.

Anonymous said...

I recommend Do.cto.r To.le.do with Reproduc.iv.e Biolo.g.y Ass.ociat.e.s in Atlanta, he was the one who let me try Lovenox after four miscarriages that had no real explanation. This is three years after two healthy pregnancies and I am currently 22 weeks along after starting the Lovenox at 3 DPO. Good luck, I hope you can find your "wizard". I'm sorry you are going through this at all.

meinsideout said...

I do not have any recommendations - just hoping for you - and it seems as though there are some great leads in these comments!

When I was researching recurrent miscarriage, I did come across a paper/article/opinion of a doc that stated lovenex or other blood thinners were given to women with recurrent losses that were unexplained and many were successful.

areyoukiddingme said...

Because I was 37, and cranky, I decided that testing would be useful (i.e. I demanded it) after 2 miscarriages. So my regular OB ran a regular "miscarriage panel" and in the meantime, I sought another opinion. We did additional blood analysis of me and my husband along with karyotyping. I went with Dr. Ahlering at SIRM-St. Louis. He couldn't find anything wrong with me other than elevated Antinuclear Antibodies, and prescribed heparin for the first 11 weeks and baby aspirin for the duration of the pregnancy. It worked.

I wish you luck. Hope you find your wizard.

luna said...

really hoping you find your wizard.

Jenn said...

I don't know of one out there... sorry, but I wish you the best. I'm so glad I found your blog. We have lost four, and it's nice to know that we aren't the only one that have decided to continue. Good luck!

Anonymous said...

I know we have a great recurrent miscarriage clinic at UNC here in North Carolina. I personally saw Dr. Toma at NCCRM in Cary. I had 3 prior losses before trying him. I'm almost 20 weeks now. I'm not sure if he specializes in recurrent miscarriages though. He's considered the IVF God around these parts.

Alice said...

don't know any wizards but am glad so many others have ideas! i'm pulling for you.

namaste said...

(Here via LFCA) I'm not sure where you are, but my RE is a specialist in pregnancy loss prevention. And, in my humble opinion, a wizard to the max. He is the most well read, thorough, and intuitive doctor I've ever heard of, much less met, and I am one of his miracles. He's out of Savannah, Georgia - Dr. Law.rence Od.om. He's affiliated with South.eastern Fertility Cen.ter and while I wasn't all that impressed with S.EFC, if Dr. Od.om told me to stand on my head and spin, at this point, I'd drop down in a flash. :) Let me know if you want more info and good luck.

Erika said...

(Here via LFCA). I am so sorry for your losses, and know what you've been through as I've lost 10 in 5 years. I'm in Canada so I won't recommend a wizard, but I wanted to leave you a few ideas that could make you your own wizard. Things I should've thought more serious about before now (I'm nearly 40) but we are now looking more seiously at, and these are more witin our control: a) Donor sperm to see if it makes a better embryo, b)Surrogacy to see if our embryos can survive in someone else's womb, and c)adoption. My Drs have no diagnosis for us so we are on our own to proceed however we want. Our most desired option is to have our own baby, and be pregnant (which is the dream we all have) but there is very little chance for success for us, even via FET with our left over embryos from our July IVF. I do hope you find someone to help, I know exactly what a struggle that is.
Erika

chill said...

What about a Reproductive Immunologist? That was the way I was going to go after my most recent miscarriage (#4). The Alan E. Beer Center is very well known, but they are West Coast. I know there is an equally well-known clinic in NYC, but can't readily find the name. Although it is easy to pursue the Beer Center from anywhere--you send your records and they tell you what tests you need to have done. Then you have a phone consult with the doctor once all results are in. After seeing the list (and cost) of all the tests they wanted me to have done, I decided that doing CGH/Microarray on our embryos was more worthwhile. If we end up with any normals, then we might pursue the immunological aspect before we transfer. If we end up with all abnormals, we have an answer.

Carrie1074 said...

Unfortunately I don't have any suggestions. I am glad that many others do though. I just want you to know my thoughts and prayers are with you! I wish you and your husband the best!

Sue said...

I have a couple of names. I don't know if they can help you directly, but may be able to refer you to someone.

A previous commenter referred you to someone at U of Chicago. I saw Dr. H.aney there, to put in my transab.dominal cercl.age. He also looks at women with fibroid issues and other reproductive issues. He is *wonderful.* If you decide to talk to him, I would be happy to give you my name as a referral.

My local RE is in the Cincinnati area. He has been a pioneer in REI, and I trust him implicitly. A phone call could likely get you a referral. Dr. C.hin (www.chinbaby.com). Again, let me know and I'll lend you my name.

I wish you luck in this difficult journey. Thinking of you, and wishing you the best.

Anonymous said...

After two early miscarriages, my doctor put me on heparin, even though I tested negative for clotting disorders. My two pregnancies on the heparin were successful. Don't know if it was blind luck or if the heparin played a part, but it's worth a shot.

Anonymous said...

I'm in England - which i know is a bit far for you! But thought i'd pass the info on anyway... there's a recurrent miscarriage clinic at St Mary's Hopsital, London. Its conisdered one of best (and few) recurrent miscarriage clinics in the world. Run by a doctor called Professor Lesley Ragen (and Dr Raj Rai). Professor Regan has a book - "What every Woman Should Know" which you can get on Amazon and i found really helpful. I had 3 early miscarriages in a row, then conceived my daughter. I don't know why my 4th pregnancy worked (nor why i'm now 36 weeks pregnant with my 5th pregnancy) the only thing different was that i was given progesterone suppositories with the 4th that i'd not tried in the previous 3.

I too felt like you, that i simply couldn't keep going through any more. It was the most devestating time of my life without a doubt. I only wish i had some answers for you. The only thing i did (besides consulting this clinic, getting tested for everything they knew of, and taking progesterone) was simply keep going - even though i was petrified of more losses.

I wish i could point you to your wizard....

I feel sure you'll get there though.

I will be reading and following your story from London - very very best of luck to you both. x

Anonymous said...

I'm in Australia and have done a lot of research into this. If I were in your location I would start with the Beer Center (California), or Dr Sher at SIRM Las Vegas. All will do distance consultations. Or you can go to SIRM New York.

There is also Dr Coulam (I think it is Rosalind Franklin University or something like that) in Chicago.

I'd seriously be starting to look at immune issues, particularly with your history.

Anonymous said...

Just saw this and wondered if it might be helpful eventually...http://news.bbc.co.uk/2/hi/health/8232146.stm

Echloe said...

Oh MO. I wish I knew a wizard. I can't believe how much crap has been thrown at you. Sending big hugs.

Anonymous said...

My best friend has suffered five early miscarriages. She and her husband both had every workup possible and were told there were no apparent problems. After her fifth loss, she flew to Chicago (she lives on the East Coast) to meet with Dr. Mary Stephenson, at the University of Chicago Hospital's Recurrent Pregnancy Loss. Dr. Stephenson met with her for TWO hours at their initial consult. Together, they developed a plan, and my friend is currently in the early stages of what seems to be a healthy pregnancy (her sixth). This isn't a ladybug onesie story--just a recommendation for a doctor that treated my friend with respect and had the base of knowledge that allowed her to treat issues that hadn't been found previously.

Brid said...

I don't know anyone, but my Mum knows a woman who had, I think five or six miscarriages. They put her blood thinners and her next one stuck. Very best of luck; my thoughts are with you both. B

mekate said...

Hi Mo,

You've had so much great input from so many sources.
I hope you find a path that feels right to you.
I have no advice but am sending warm thoughts your way. Just wanted to let you know I am thinking about you.

warmly,
Kate

Panamahat said...

Hmm. I need a wizard myself, and would be checking out this place if I lived in the Sates:

http://www.popepaulvi.com/

As is happens I live in Oz, but can't find me a wizard for love nor money. I'm now searching for a surrogate, which may prove just as difficult to find.

I tried the lovenox thing. Didn't work. I tried PGD twice. The first time we got no normal embryos. The second time we got two. I put them back, we miscarried anyway. I am not the happy ending, the simple answer or the easy fix. But no one likes to tell stories like mine, because, hey, they don't give people the same kind of HOPE that the miracle ones do. Sigh.

Wishing a fabulously miraculous wizardous ending to your tale. And SOON.

K said...

I read this post today and thought about you, so I thought I would just pass it along:

http://eileenburnsjin.blogspot.com/2009/10/plan-for-my-next-ivf-cycle.html

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