mandag 31. mai 2010

Mail fra dr. Haney i USA

Har sendt e-post til noen av ekspertene jeg har funnet adressen til på abbyloopers. Og den ene av dem har svart allerede etter noen timer. Slikt liker vi!!! Men det er ikke lite det koster å dra over til han, selv om han virker veldig erfaren. Jeg vet at Dr. Davis i New Jersey koster mindre, så jeg håper jeg snart får svar fra han også. Men det føles velig godt å få svar såpass raskt!!  Min e-post først. 
Må bare nevne den setningen jeg likte best i svaret:  Luckily, virtually all women with a transabdominal cerclage (TAC) in place will deliver babies at term, albeit by C-section, regardless of whether they have failed with a vaginal cerclage. 
From: esmeralda
Sent: Monday, May 31, 2010 7:16 AM
To: Haney, Arthur [BSD] - OBG
Subject: FW: Transabdominal cerclage, 3 midsemester losses

Dear Dr. Haney,

My name is esmeralda, I'm 34 years old and live i Norway. I found your address through the group Abbyloopers on Yahoo. 

I'm writing to hopefully get some more information on the Transabdominal cerclage, so that I can decide how to proceed trying to fulfill our wish of having children. At the moment I feel that I'm probably one of the most knowledgeable about Incompetent Cervix in Norway, as most gynecologists I meet really don't seem to know much.  

"Short" summary of my past medical history: 
We have been trying to conceive since august 03, unsuccessfully until we had our first cycle of IVF in november 08. Maybe our infertility was due to my overweight, my doctors have found no apparent medical explanation. (I have now decreased from BMI>43 to around 35). They have found, however, that I have uterus arcuatus (bicornate uterus is the same, right?), but this shouldn't cause any problems in getting pregnant.  
In feburary 09 I lost our first baby boy at 16w1d. I had no forewarning, no pain, no smelly discharge, no fever. My water broke as I was having bowel movements, and he was born a few hours later, alive at first admission. The initial bacterial cultures form the cervix was negative, but the placenta had moderate growth of Giardia Vaginalis.
I miraculously got pregnant again shortly after, without any help of IVF. But in august 09 I felt pressure against the cervix and was admitted with full dilation and bulging membranes at 15w5d. I was put on bedrest, but got an infection after a day or two, and the baby died in the uterus. Again there was no bacteria the first days, but after the delivery they found growth of Enterococcus Fecalis in the placenta. This time the Gynecologists suspected IC, and I would get an TVC if pregnant again. 
January 10 I had my second cycle of IVF, and got pregnant. I had the Shirodkar cerclage placed at 11w4d, it was really difficult to place, as they during the procedure found that I had virtually no portio vaginalis at all. He managed to pull the whole cervix downward and put the stich about 1 cm up. I think my gynecologist don't believe in bed-rest, because although my cervix was shorter every time he measured it, and to me it looked like it was starting to funnel, he insisted on that I should be up and doing close to normal activities. His explanation was that the gravity and weight of the fetus is not what causes pressure on the cervix, instead it's the growth of the uterus and pressure of the uterine muscles that does this, and theres no way of preventing that (would love to hear your opinion on this!). They did bacterial cultures numerous times during the pregnancy, all negative. This pregnancy lasted until I was admitted at 17w5d with a small bleeding and on inspection they found dilation and bulging membranes at 3-4 cm. After 1 day on bedrest my water broke and the cerclage was removed. One day later labour was induced, and our third angel boy was born. Culture from the placenta showed moderately growth of enterococcus again. 

So here we are,- searching for a way forward. 
I had read about TAC before, but there's almost no experience with it here in Norway. I have been referred to a doctor who might know more about it and have some experience, but I doubt someone has done more than a handful of this procedure in this country. In your opinion, how many TACs should someone have done to call themselves even a little experienced? 
And how do you regard our prognosis for a successful pregnancy concidering the bicornate uterus and the IC? I'm having doubts as to if I can survive another loss, but I'm also eager to give it one more try if the chances are there. I understand, of course, that there are no guarantees. 
Thinking about our fertility issues, would you recommend a pre-pregnancy or in-pregnancy TAC? I am worried that pre-pregnancy may decrease our chances to conceive naturally, but if we need IVF anyway maybe it doesn't matter? If pre-pregnancy, how long after do we have to wait until the next IVF? And how soon after the last loss can the TAC be placed? 
As I understand you also treat patients from abroad, and for us cost is obviously an issue; do you know how much it would cost for me to come to your clinic and have the TAC done by you? 
I have also read about progesterone supplements in one way or another (we don't have the 17-P shots in Norway, but maybe I can buy them elsewhere if needed) and am wondering if this also could help in my situation. Although I definitely have not had contractions prior to the losses, maybe it would relax the uterine muscles and put less pressure on my cervix? Just a thought. 

I think these are my main questions for now. I hope to hear from you, and thank you for your help. 
If you need any more information before answering, I'm happy to help with that. 

RE: Transabdominal cerclage, 3 midsemester losses‏
From:Haney, Arthur [BSD] - OBG (
Sent:Monday, May 31, 2010 6:18:31 PM
Cc:Catenazzo, Deborah [BSD] - OBG (; Ortiz, Mayra [BSD] - OBG (
Dear esmeralda,
I am sorry to hear of your losses and am sure it was devastating for you.  With your history, there is no doubt that you have an incompetent cervix and with a shorter than average portion of your cervix in the vagina, it explains why your Shirodkar failed.  Your arcuate or bicornuate uterus is not the issue as women with that endometrial cavity contour do not have second trimester losses and typically deliver at term.  They have a higher incidence of a transverse lie of the baby but not the 16-17 weeks losses as you have had with painless dilation and effacement of the cervix.  Luckily, virtually all women with a transabdominal cerclage (TAC) in place will deliver babies at term, albeit by C-section, regardless of whether they have failed with a vaginal cerclage.  Unfortunately, I am not aware of physicians in Norway who place TACs but then again, I am not that familiar with your country.  I currently place over 100 TACs per year and do indeed place them in women from other countries.  I have a patient coming this week from London.  I place them both prior to and during pregnancy (typically at 10 weeks) but I prefer placing the TAC prior to pregnancy as the incision is much smaller, the recovery quicker and you avoid operating during pregnancy.  Other than not driving for a week, there are no limitations on your activities and you need spend only 3-4 days in Chicago before flying home.  Placing them before conception has no impact on fertility and if you were to have an unrelated first trimester miscarriage, you can easily do a D&C without altering the effectiveness of the TAC in any subsequent pregnancies.  Additionally, when you undergo assisted reproductive technologies such as IVF, I strongly prefer placing then prior to pregnancy as those treatments significantly increase the twining rate and with a TAC in place that is no problem as the support can easily manage twins.  Unfortunately, twinning almost always results in a loss with a vaginal cerclage.  Typically, I like to wait about 60 days before placing a TAC after a loss to allow your uterus to return to normal size.  When undergoing IVF, I only ask you to have one menstrual cycle to shed the endometrium present at the time of TAC placement so there is no question that the embryos are transferred to a normal endometrial cavity.  The use of 17-hydroxy-progesterone shots is not needed but many women in the US use them because they do reduce the risk of pre-term labor.  However, that is not more common in women with TACs so for it to be beneficial, you would have to have that is an independent second problem.  Cost is the most common problem for patients from other countries as they do not have US insurance.  We have a very dysfunctional and expensive health care system here compared to your more efficient federalized approach.  The total cost for placement of a TAC is about $25,000 US but our insurance companies negotiate much lower contracted rates.  Since you do not have an American insurance company negotiating on your behalf, you are disadvantaged.  We do have an International Office who can help you with the arrangements.  I would be happy to discuss this on the phone to get all of your questions answered and you can arrange that by contacting my assistant, Ms. Debbie Catenazzo, at 773-702-1627.  You simply dial the international access number, the USA country code and then 1-773-702-6127.  I look forward to speaking with you.  Good luck.
A.F. Haney

10 kommentarer:

  1. Du er sterk som klarer å mobilisere krefter til å ta tak i dette selv. DET står det respekt av. Beklager at du selv må søke eksperthjelp, det er jo ikke din jobb. likevel syns jeg du er tøff som virkelig gjør narr av de norske gynekologene og henter ut eksterne eksperter, som har gode resultater å vise til! Stå på, jeg støtter deg, uansett hva du velger å gjøre!

    klem fra krokkis :)

  2. Utrolig bra, Esme! Jeg skjønner deg veldig godt, at du tar tak i dette sjøl - du har jo opplevd på værst tenkelige måte hvordan det går når man overlater ting til 'våre' eksperter :( Jeg har STOR tro på at dere får det til med riktig hjelp, og jeg tror du nærmer deg en løsning nå :) Siden jeg i grunnen ikke har noe å bidra med, sånn ellers, så står jeg gladelig på sidelinja og klapper og heier på dere! Stor klem fra meg

  3. Wow Esm, jeg er imponert over din handlekraft, men det er kanskje det som holder deg gående. Det var et svært oppløftende og omfattende svar fra legen og jeg håper dette kan være løsningen for dere! Det er utrolig synd vi ikke har denne kompetansen i Norge, men det er kanskje ikke nok tilfeller i året til at de klarer å opprettholde den... Spennende å følge med på deg og veien fremover.

    Mange klemmer Oblivion

  4. Dette var et oppløftende svar! Det er virkelig håp for dere! Jeg skjønner at pengene kan være et problem, men det kan ordnes¨på en eller annen måte. Kostnaden av å ikke forsøke tror jeg i det lange løp blir mye større. Dette skal gå!!

  5. Dette høres jo veldig bra ut da! Håper du får til dette altså. Hvis jeg vinner i lotto så skal jeg spandere de 25.000 USD altså! LETT!!

    Tenkte på det å bruke surrogat (som jeg ser på som alternativ for dere). Det koster vel ca like mye og hvis du har såpass bra prognoser med dette inngrepet som jeg tolker det så hadde jeg heller brukt pengene på et slikt forsøk fremfor surrogat :)

  6. Takk for tilbakemeldinger alle sammen.
    Ja, det er godt å få noen positive tilbakemeldinger. Og det er mye penger, men ingen umulighet. Har noen oppsparte midler som skulle gå til hus, men det er på langt nær så viktig.

    Håper å høre fra Dr. Davis også, men han har visst vært litt dårlig på mail de siste ukene, har visst mye å gjøre. om det tar alt for lang tid, så får jeg forsøke å ringe han.

    Som du sier, Heidisen, er det langt billigere en en surrogati-prosess. Verre blir det om vi må gjøre begge deler... ;)

    Stor klem til dere alle sammen!!!

  7. I dag blir det bare en stor klem fra meg, har fått litt mye å tenke på akkurat nå.....

  8. Skal si du står på Esme:) hvilken styrke du har!!!

    Men med et slikt svar fra en ekspert må det gi både nytt håp og tro!!
    Håper dette er veien som du har lurt på hvor går... Håper du får svar og god hjelp om du velger denne form for hjelp!!

    Lykke til;) du er savnet!!!

    Klem babyja

  9. babyja: blir rørt av at du/dere fortsatt følger med meg, savner dere jeg også og skulle så gjerne ha fått bli med dere fine jentene frem til oktober. :klemme:

    Flippy: god klem tilbake!!

  10. Hey Esmeralda,

    Vi har hat en TAC preterm her i Norge. We just operated in a TAC in Ulleval hospital. We have lost 3 girls. One set of twins (LIMA & LEAH) last year and now in June, one girl. (INDIA)

    If you respond quickly we can share more of our case and experience on this blog. Otherwise call 97723802 and ask for Aina or 97108852 and ask for Ellis