yet another annoying update

pixiem38 · August 2012

WELL.....if i get ttts prior to 24 w, we are doomed. That is nice to know, huh? I called the mfm office again, argued with them, again.....finally got a nurse on the phone who told me they do.monthly scans until 24 weeka and there is nothing tk be done prior to then if they get ttts anyway. And yes, still no referral, but it is.not sounding like a referral.would get me anything anyway if standard practice at the mfm is one scan a month until 24 weeks (i do know that there are things that can be done prior to 24w. Apparently i'm the only one in tbe know in thia entire state, even the mfm)(this also does not inspire confidence) Believe me when i say that i am.fully aware of the risks involved. Apparently i am the only one in this entire state. To include the all.knowing specialist. So....what else can.i.do other than move out of state? Well...i have an u/s (ironically to.determine chorionicity)tomorrow and tbat will be reviewd by one of the mfm doctors and i.will be contacted if there is a reason for concern. I am thinking i am not going to be contacted (the nurse at the mfm also.said that juat b/c they are twins does not make me high risk, regardleas of placenta). So...i have an appointment with the original ob in another week and then the big a/s 18days from then. I plan to change obs again...and keep all the appointments with the original one b/c he does office scans and a crappy office acan is better than no scan. Thia warrants a grievance somewhere, but i am.at a loss as to where. I just pray that nothing happens to these babies (that is a given for everyone, but it would be nice to.feel.like there were.competent people.around if something did happen).i Thans for reading and offering me support. This is just ridiculous and absurd and i cannot believe how screwed up it is. I will try to not complain about this anymore as i.juat don't think there is anything to be done and it is a waste.of energy to be so.upset over something i have no.control over anymore. Reply

Mrs. Alice · August 2012

I am so sorry and angry over this for you. It sounds like you are doing everything in your power to advocate for your babies. I wish there were some OB practice guidelines stating that mono/di twins need scans at least every 2 weeks past 14-16 weeks because of the TTTS risk. That nurse is dead wrong that nothing can be done before 24 weeks. Laser surgery for TTTS can be done starting around 16 weeks and has saved countless lifes. Makes me angry that medical professionals are not educated about this. Maybe you speak to an office manager and back up your requests by recommendations from reputable sources?

Rynleigh · August 2012

How feasible is it for you to move to a state where people don't practice hick medicine?? lol

If it is ANY comfort to you, at all, the statistics do show that the chance of TTTS is only 15%.... that means you were more likely to lose one of your twins in the first trimester than you are for your babies to develop TTTS. I just really hope that you can find SOMEONE who will listen and begin monitoring for it.... if you have any ultrasounds between now and 26w where the fluid proportions are obviously different or one baby begins really slowing in growth compared to the other, SCREAM at the doctors to diagnose TTTS and seek laser treatments.

HokieLaw · August 2012

My MFM only did scans every 4 weeks. I had mono/di twins. They never showed signs of TTTS.

My MFM did tell me that if they ever showed a growth discrepancy, we would be given scans every 2 weeks.

ks3pink · August 2012

I have read some of your posts but I am wondering if I have missed something. Are you having some type of problem now? If not then I really don't think its strange that your doctor doesn't see the need for an mfm. I had mo/di twins and my ob did scans every 4 weeks from from 20 weeks to 28 weeks then every 2 weeks from 28 to 34 then twice a week from 34 to delivery. I felt fine with that monitoring and my ob.

pixiem38 · August 2012

I wish i could quote the two posts prior to this.. just pretend i did it.....??????both of your posts do make me .feel.slightly better. A lot of it has to do with the fact that i do not trust my doctors (because i have been given wrong info. The first ob told me it was impossible to tell chorionicity until much later and that it didn't matte anyway. I did not get the feeling that he was well versed in twin pregnancies (there were other examples too). I then.switched (recently)and again, i am not comfortable (to be completely fair, i MAY be comfortable with the obs at the practice vs. the cnm i saw, but there is no appointment with an.ob available next month, nor was there one when i initially switched. She dismissed my concerns without addressing them, was condescending and rude and i don't want that as part of ny birth team. Both times i figured i.would feel better going straight to an mfm, and was denied both times. I am also 39. I have done a LOT of research and it seems to be pretty standard practice to consult with or refer to.an mfm for mono-di prwgnancies fairly early. It is also recommended that there are frequent and early scans to look for ttts. In both cases, i would probably be okay with less monitoring if i felt at all.confident that the drs. were very experienced with mono-di, but considering the incorrect info.they both gave me, and the fact that we live in a rural.area in a not that populated state, i w.ant care elsewhere (there is ONE MFM in tbe state and they will see me, but only with a referral. Nobody will give ne a referral because they do not consider me to be high risk.. j find it interesting that in other states, just being pregnant with twins, any twins...pops a mom.into.automatic high risk....not here though....??why should i get lesser care because of where i.live? ????????????????again, i apologies.for block.o.text.

pixiem38 · August 2012

I also postes an attempted link a few days ago that talks about prenatal care with multiple pregnancies. I was advocating well before i.found the article, but it does a better job summarizing why. I am doing all this that i can....,??????????????????

karebearmccroar · August 2012

Good for you for self-advocating. Can you go above the nurse to ask? I've had nurses just be in the placating role, always telling me everything is fine. I think you are doing the right thing, maybe another OB will refer you? I have heard of other MoMs of mono-di twins getting scanned only every 4 weeks, although obviously every 2 would be better. It sounds to me like everyone's knowledge base and attitudes are actually worse than that specific plan of care, they seem like they don't know what they are talking about and are also disrespecting you. I'm so sorry you are going through that, sometimes I feel like I am made to feel like such a B. when I know that I am just advocating for the best plan of care for me and my babies. Keep trying, try another OB? Call the MFM office, tell them you were told to get their take on the ultrasound they are reviewing and try to talk to MFM that way? Sorry, I don't have much for you except for indignation on your behalf

Mrs. Alice · August 2012

Just wanted to add that I was only seen by my MFM every 4 weeks for scans until they diagnosed TTTS. I was supposed to see my OB in between those visits. Looking back and what I know now, I wish I would have advocated for every 2 weeks. Chances are you will be just fine, but through the TTTS community I have heard way too many stories of things not going fine when people's doctors reassurred them it would be. I'm not saying this to scare you but I think being proactive is key.

pixiem38 · August 2012

Mrs. Alice:
Just wanted to add that I was only seen by my MFM every 4 weeks for scans until they diagnosed TTTS. I was supposed to see my OB in between those visits. Looking back and what I know now, I wish I would have advocated for every 2 weeks. Chances are you will be just fine, but through the TTTS community I have heard way too many stories of things not going fine when people's doctors reassurred them it would be. I'm not saying this to scare you but I think being proactive is key.

i would feel a lot better if i were being seen by someone every two weeks (ob alternating with mfm monthly)....but it is just not going to happen, no matter how much i.kick and scream and beg. Now i am.going to stay away from all the scary stuff and try and keep positive, because short of moving out of state, i cannot make it happen. I am going to think positive and pray a lot, and sue the pants out of everyone if anything goes wrong. Obviously i want nothing to.go.wrong, and i have never in my entire life ever thought of being possibly litigious, but my mental health is also at stake and i can't continue being filled with anxiety, fear, and dread all the time, which seriously describes how i have felt basically every minute of every day (and at night when i dream too). They will not.let me see a mfm, they will not monitor me.any more frequently, they will not listen to me..?????????the mfm office rold.me themselves that all things being normal, monitoring ahould be once a month....................... i have thia written down, " if something bad happened, would i feel like i did absolutely everything i could?" And based on all these constraints, i do think i have done all.i can (i have appointments with the first ob, the second evil mw at the other ob practice , the a/s,....scheduled for every two weeks until i can get far enough to warrant the twice a month scanning......that is all i can do unless i travel 4+hours to get out of state. I just got back from a 2hour u/s that was really detailed that the mfm will see. At this point his eyes are on my case, even if his body has not consulted with me.....i am very bitter and very angry and anxious and depressed, because thia is completely absurd....but i need to have some and calm.down, because the amount of stress i have been under cannot be good. And there is.nothing elae i can.do.....

tidetravel · August 2012

I would start with switching OBs and telling the new one that you are mono-di and would like a referral to an MFM. That being said, how far away is "out of state" for you? Honestly, if you are already having this level of anxiety over your pregnancy, I would suggest doing everything that you can to get a MFM out of state. It may seem extreme, but having a competant doctor that takes your concerns seriously would make a full day's drive once a month worth it to me. Scheduling your OB's visits in between your MFM visits means that you still get ultrasounds every 2 weeks (that's what we were advised to do), and your ultrasounds from your OB visits can be sent to the MFM.

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