urgent! Help please! I got Twin-twin transfusion syndrome? What to do?

I live in Southern CA. I have to make a decision whether to take a laser surgery or an amnioreduction for Stage 3 TTTS. Can somebody know which to choose?

Can somebody tell me which doctor can provide laser surgery from UCSF, USC or UCSD? Does anybody have experience with Dr. Ramen Chmait at USC? Help please.

My urgent situation is pregnancy 23 weeks 3 days by dates, TTTx syndrome:
1) Largest vertical pocket: Twin A 9.7cm, twin B 0.9cm.
2) Twin A: The cardiac size and structure appeared sonographically normal at the four chamber view, and cardiac rhythm was regular. Bladder was visualized. The adbominal wall appeared intact.
3) Twin B: The cardiac size and structure appeared sonographically normal at the four chamber view, and cardiac rhythm was regular.
4) cervical length: 41.00mm

Any suggestions sent to [email protected] would be highly appreciated!

Thanks!

Ginger
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Email: [email protected]

PS, ultrosonic Details:
==========Twin A==========
Fetal doppler studies:
S/D PI RI PSV AEDV RF
3.6 1.38 0.73 cm/s No No

24 weeks 1 day by this ultrasound (EDC =Dec 25 2008)
breech presentation, polyhydramnios
hepatomegaly-calcification seen

==========Twin B==========
absent fetal bladder and umbilical artery absent enddiastolic velocity. There is no evidence for hydrops in either twin.

Fetal doppler studies:
S/D PI RI PSV AEDV RF
5.8 1.56 0.83 cm/s Yes Yes

21 weeks 3 days by this ultrasound
transverse presentation

 

Ginger - I'm sorry you're having to deal with this situation. How stressful. I know that the Drs at UCSF are pioneers in Fetal Diagnosis and Treatment. I work at a children's hospital on the east coast that has a fantastic Fetal service - our Chief came from UCSF 12 years ago - it would be a long way to come to Philly. Only a VERY qualified Fetal Medicine Specialist can determine the best treatment for TTTS. I hope you are able to find good care.

 

I have no personal advice, but there are many women on this site that have been through what you are going through and I am sure that they can help you. I just wanted to send :hug: your way.

 

I'm so sorry to hear of your TTTS diagnosis.

My best advice would be to visit www.tttsfoundation.org - there is a wonderful group of women there who have a lot of information regarding TTTS - go to the message boards and look for the "During Pregnancy" message board. I visited that site a lot during my pregnancy - my boys were never diagnosed with TTTS, but we had concerns at different times regarding their growth and fluid amounts and I posted questions and the ladies there were VERY helpful and informative. Another doctor that is a pioneer in TTTS is Dr. Julian DeLia. You can find his contact information on the site.

Best of luck to you and your babies.

 

:hug: Keeping you in our prayers and hoping you find the answers you are looking for. I have not been there so I really dont know what to say. :hug:

 

I am so sorry to hear about this..I pray that you can find a great doctor who can perform the laser surgery!

Wish I could give you a name of one by you, we're in texas..so sorry. God be with you and your babies

 

There is another website - www.fetalhope.com - that also has a good section with message board on TTTS. Many women there have gone through the laser surgery. Most there have consulted with Dr. Quintero who is in Tampa. He developed the staging system for TTTS and if I remember correctly, trained Dr. Chmailt. He is also available for phone consultations and would give you his recommendations for treatment options. Dr. DeLia also does this.

Good luck. I know this is a stressful time and you have my prayers as you go through this. We currently have mild TTTS which we are monitoring, but I've done a lot of research to try to be prepared if it progresses.

 

I just sent you an email. Good luck!

 

sent you an email. PM anytime!