pain improved but still persistent after tongue tie procedure

[cww]

Our daughter is almost 4 months old, and about 2.5 weeks ago she had a posterior tongue tie and a lip tie revised (laser surgery).  We did all the exercises for a week after the surgery to prevent reattachment, and the dentist who did the procedure said that (from photos we sent - he's a 3h drive away and we don't have a car) it didn't look like the wounds had healed back together. 

Since the procedure, the pain has been significantly reduced (have been able to get off the nipple shield), BF sessions have gone from 1-1.5h to 20 min, and the baby has gained a pound (she was a slow gainer without daily supplemental EBF before).  So I'm thankful for all of that.  However, it still hurts!  (even if the pain is better than before)

Here's a description of where we are now: 

My nipples are now coming out deformed and flattened, either looking like a lipstick (which we had before the tie was clipped) or pinched into a wedge shape with a white line across it (this is new and is supposed to be a sign of posterior tongue tie - the fact that we never had this before the procedure is one reason the posterior tongue tie took 3 months to be diagnosed - so why would it only show up after the procedure?!?). 

We are still getting vasospasms during feedings despite a month of taking nifedipine (although I think the frequency between feedings went away with the medication - unfortunately, it also gave me bad headaches).  It definitely hurts much more when she latches on and then tends to get better shortly into the feed, but it still hurts most of the time when she sucks.  I saw an LC about 1.5 weeks ago, and she worked on positions, but if that helped it was only marginal.  No one has ever identified anything wrong with her latch. 

Additionally, our daughter will often repeatedly pull back off the nipple or twist off - if the let down is too strong, if the flow slows down too much, if there is something more interesting going on somewhere - and this is really compounding the nipple trauma.  The LC thought she might be having teething discomfort (although she has no signs of teeth coming out anytime soon) and that this could be compounding things, but it seems to me that teething gets blamed for a lot without much real evidence...

I'm hoping that some of you out there who have had experience after a tongue tie procedure may be able to help me figure out how to try to address the remaining pain? 

Thanks in advance for any advice, shared experience, ideas or moral support!

(If it weren't for the wonderful people on these boards, we wouldn't have gotten this far!)

[PatioGardener]

I have heard of some moms having a good experience with CST after a posterior tongue-tie release, and also having to do suck exercises for several weeks-months afterward too.

Way to go for sticking it out - I hope you find some answers and decrease the pain to zero soon!

[homemademom]

I recommend the CST, too.  Also, has the baby been evaluated for bubble palate?  My ds still couldn't transfer milk after the tt procedure because the high arched palate was still there. It resolved enough 1 1/2 mths later allowing us to finally nurse (prior to that, I was pumping and supping with bottle).  Even after I put him back to the breast, he still didn't suck all that well. He didn't like the fast flow of letdown and he didn't like how far back my nipple was going in his throat. He kept trying to push it out or slip off.  CST definitely helped, but so did time and practice nursing.

I never could get a lac consultant to talk to me about it suck training and info online is spotty. I did read a bit about having baby suck on your finger while pressing down on his tongue to keep it flat.  A formerly tongue tie baby might be used to pulling his tongue up and bunching it up (mine did that). He had to learn how to keep it flat while nursing, and to stick it out.  The Gerber natural flex pacifier is supposed to help with this. We found it useful. Also, the hospital pacifiers with the  straight firm nipple also helped.

[gemasita]

cww - I'm sorry you are still having pain!  I am too.  The pain study I was in didn't help and the cultures didn't show anything on my skin or in my milk.  I did get started on nifedimine as a result of it so that was good that the LC recognized the vasospasms (no one had caught that) but, like you, it's not helping after almost a month.  Do you know of any other treatments for that?  I didn't think about it maybe not working...I had never heard of it not working.

I, like you, still have pain mostly at the beginning of the feeding and it lessens in the middle of the feeding but doesn't completely go away.  It makes it hard to nurse in bed because I can't just fall asleep!

I was really hoping the vasospasms were the answer for me but I guess not.  The OB who ran that study wanted to send me to a pain specialist who is, apparently, a very smart lady but I don't know if it's worth it.  I guess I feel like she's not going to be able to help.

I am wondering now if my nipples are just flat enough that DS has to pull them out during each feeding and that's why we have the pain every time at the beginning of the feeding.  Like homemademom, DS doesn't seem to like to have my nipple back as far as it SHOULD be and he pushes it out some.  But no LC has been able to give me any suggestions for improving his latch.

At least the pain gets better after the first minute or so but I, like you, wish I could get completely out of pain.  Oh, and being off the nipple shield is a step in the right direction!  I'm so glad we got off of that.

Oh, DS pulls off too, over and over, and takes my nipple with him!  Ouch!  I can't figure out why he does it for some feedings and not others.  Maybe distraction, or maybe it's when he gets tired (he turns his head from side to side when he's tired) but I honestly can't really see a pattern.

Edited by gemasita - 5/16/11 at 12:36pm

[cww]

Hi everyone,

Sorry for the delay in replying - I was having trouble logging back in to the site, and then we had to pack everything up and move across 6 time zones, baby and dog in tow, and we've been dealing with the 4 month sleep regression (plus jet lag!) - things have started to calm down, so I wanted to come back and post an update. 

patiogardener and homemademom, thanks for the suggestions.  I'd like to try CST, but unfortunately I'm now in a tiny village in the alps (the nearest town 20 min away doesn't even have a regular pediatrician!), so I'm not sure where to find one (or what it would be called in German?).  I think if things are still not "fixed" by the end of August when we move back to NYC, I will try to find someone there.  I did take our daughter to my chiropractor, who did some gentle work on her, but she didn't focus on her sucking per se, and she's not a specialist in that area. 

gemasita, I'm sorry to hear that things aren't any better for you.  I'm still having the vasospasms, but I think mostly only during or right after feeding (if I'm still getting them a lot between feedings, I can't feel them, anyway).  I'm convinced that in my case the vasospasms are ultimately just a reaction to suck trauma, so they have improved as the trauma is now less severe.  In terms of treatment for them, I just always wear nice thick cloth breast pads (Bamboobies) to keep my nipples warm - right after the nipple comes out of her mouth, I try to tuck it under some cloth to keep it warm, and if I am having a vasospasm in the nipple, I'll squeeze the base of the nipple with my fingers gently a few times until the white color goes away (I read somewhere that this is supposed to force the blood back into the white area?) and that does seem to reduce the cold burning painful sensation that comes with the spasms. 

In terms of other drug treatments for vasospasm, I know that there are other options - the BF doctor I saw mentioned several - here's what I can remember from my meetings with her: 

Taking 100mg of B6 for a few weeks can sometimes help (I was already taking plenty of B vitamins, so this didn't make a difference for me.)

Apparently there are other medications that can be used instead of nifedepine (I didn't try them, b/c I'm pretty sure my vasospasm is from a trauma, and so I don't think it will completely disappear until the trauma is removed, and taking drugs would just be addressing the symptoms and not the cause - but apparently some people can have vasospasm as a primary issue) - in particular I remember the doctor asking if I had ever had migraines and had success with migraine medications (yes and no, for me) - she said that she had luck with some patients by prescribing their migraine medication for the vasospasm (we discussed this b/c the nifedepine gave me a horrible incapacitating headache for the first 5 days or so that I took it, so she was looking into alternatives).  I think there are also some other blood pressure meds that can be alternative to the nifedepine, but which maybe aren't as ideal b/c they tend to be less effective or have worse side effects?  (I can't remember this part exactly.)

As for me, there is definitely still pain when she nurses - it's bearable now, so I've just been living with it, but I can't tell if it is really getting any better.  It's theoretically possible that it is improving ever so gradually that I'm just not really noticing the difference, but I know there is still an issue b/c my nipples still come out of her mouth looking pinched and distorted. 

I think one thing that does help the pain right now is the fact that she can at least remove milk efficiently now (and my left breast has some major oversupply, so the milk on that side practically shoots out at her) so that she only needs 10-15 minutes to eat - I think simply having her nurse for shorter periods really helps.  She would like to keep sucking for pure comfort after she's stopped really eating, but I can't tolerate that - now that she can keep a pacifier in her mouth (post tongue-tie revision), I transition her to a Soothie once she's done sucking effectively.  It makes me wonder if maybe her latch is just as painful as ever, but just manageable now because she's only nursing for a short period of time instead of those marathon 1-1.5h sessions. 

We have tried suck training (the last LC recommended it each time we saw her), but it just doesn't seem to do anything, and it seems to really make her angry and frustrated.  We are supposed to play "pacifier tug-of-war" or use my finger to press down and out on her tongue, but it doesn't feel like I'm getting her to use her tongue correctly this way, and it doesn't make any difference in the pain during the feeding. 

For now, since the pain is at least mostly manageable, I've just been living with it (and appreciating not having to go to doctors and LCs and race around looking for solutions for a month), and hoping that it maybe will improve as she gets older.  If it doesn't, I'm ok with that for now, since the pain is no longer excruciating, but I think I will definitely go back to hunting around for solutions in August when I'm back home. 

If anyone has any further suck training tips, let me know!  Thanks again for your responses, everyone.  I really appreciate the help and support.  I've been really grateful for these boards.