An adult's response to why ties should be revised in babies...

I am 40 and had my posterior tongue tie revised recently. It went well and I had immediate improvements. My mom couldn't find support when I was little to revise the lip and tongue ties right away. She developed mastitis soon after I was born and had to have a surgery. I was put on formula when a month old resulting in severe allergic reactions. 

Then I had severe ear infections until I was almost 10 y. o. (they didn't do tubes back then). I now get comments on scarring inside my ears all the time. I still remember how unbearable the ear ache was and sleepless nights from pain. Just having a chance at avoiding ear pain would make me run for a revision for my child. Unfortunately my late revision is not going to change my significantly underdeveloped lower jaw which was pulled backwards by the tie resulting in what is called a "weak" or receded chin. It is also not going to return thousands of $ spent and has yet to be spent on orthodontia, mostly due to the tie which led to lack of breastfeeding and subsequently misaligned jaws (See Dr. Palmer research among other things). Multiple orthodontist told me I had to break my jaw to extend it, there was no other way to fix significant underbite and overjet. It is a complicated surgery with a lot of things that can and do go wrong. I had to decline the surgery, so they extracted 4 teeth to pull the teeth back with braces which made my mouth even smaller leading in part to exacerbation of digestive issues, food allergies, teeth grinding and clenching, suspected sleep apnea and resulted tiredness. Now instead of spending my time with my kid and family, I am tired dealing with fatigue, sleep disturbances, TMJ... (obviously there were other factors besides the tie, but there are plenty of stressors on the body and one more eventually would break a camel's back).  Why would you want a properly developed jaw? You don't see many athletes with receded or "weak" lower chin and jaw lines. You need to be able to breath unobstructed to obtain best results in sports and there is also a social stigma especially against men with receded jaw line. The tongue is the first and main orthodontic appliance. It is a muscle capable of applying "500 grams of pressure on teeth, yet only takes 1.7 grams of pressure to move a front tooth." You want the tongue to apply the pressure properly. No matter how much ortho you can do later in life, if you don't fix the tie, the tongue is going to continue push them the way it is tied, not the way your orthodontist want your teeth to go. To be afraid of the procedure, especially on a small baby is very understandable. It is good you both taking the time to weigh all the pros and cons. I hope you will be able to reach an agreement. You both are trying to put the baby in the optimum conditions for his development and ensure a healthy and happy baby.

~Anya Rumi 

It takes a village...

Success Story / Long Post: With my son, we had a tongue tie diagnosed too late and it was only partially revised, so I was never ever able to fully breastfeed him and I instead pumped 8 times a day for a year, while constantly battling low supply. This time with my daughter, I felt more prepared on the tongue tie front and my plan was to get it corrected early on with a laser and then our breastfeeding journey would be much easier than with my son, and hopefully successful. Unfortunately she was born with a very severe tongue tie. Scissors were used when she was born to clip what they could, when she was 4 days old we had someone in town try to correct it with a laser, but it was so thick and vascular, it was only partially revised, though her lip tie was able to be fully corrected. 24 hours after the laser revision, my daughter became lethargic and stopped eating, so we ended up at the ER due to dehydration. No one was able to get an IV in her, so we were admitted into the hospital where we ended up staying for 5 days (probably would have been shorter if Memorial Day wasn't thrown in the mix). At this point my daughter completely stopped nursing and I had to resort to pumping full time and trying to finger feed my daughter with a syringe. It was a very stressful 5 days just trying to get her rehydrated and hoping that she might start breastfeeding again. But thanks to the amazing lactation support at UNMH, even though everyone else was telling me how insignificant that tongue ties were and their effects on breastfeeding, lactation was my advocate and they forced the issue on getting speech and ENT involved. Finally, ENT looked at her tongue and agreed to try and correct it under general anesthesia. So we went home thinking her tongue tie was fully revised. We did the recommended stretches and kept on trying to get her back on the breast. After 2 weeks, she finally started nursing again. Over the next month we slowly worked her up to breastfeeding full time and started to wean out the bottles little by little. After the ENT procedure had fully healed, we still noticed a very significant tongue tie, so we decided to go to see Dr. Bobby Ghaheri in Portland to get her tongue tie fully corrected once and for all. So last week, her tongue was completely corrected and we are now fully breastfeeding and she just took a full weighted feeding within 20 minutes this morning and she is now 12 weeks old!!! It has been a long road and I honestly thought we might never get here, but I am finally breastfeeding one of my babies!!! So for those struggling, it is possible with the right team around you and lots of support. It truly takes a village and I am so thankful for everyone that has helped me get to this point :-)

~Carrie Jung 

"No more Zantac!!"

We went to our local breastfeeding support group today for a weighted feed and check with My days LC. We are currently 11 days post release #3, a little history- the most he has gained in 3 months was an ounce a week. In 11 days Judah has gained 11 oz! His transfer in 10 minutes was 6.2 oz! Completely off zantac since day of revision and no longer symptomatic. He is sleeping for longer, uninterrupted cycles. And babbling where he wasn't trying to babble at all before. His mouth is almost entirely pink, the wet scab has nearly healed completely and remained entirely open. One more assessment with occupational therapy and we hope to graduate treatment. Assessment with an SLP is coming soon to rule out need for myofunctional therapy or early intervention. His latch is not painful anymore. My supply is back to 100%. No tongue clicking. No gagging. I think this one has stuck!

~Jessica Mays

A year on...

A year ago I took my 5 month old to a pediatric dentist to see if she had a tongue and lip tie. I remember it clearly because I had decided I was going to give up nursing if I  got told again there was nothing wrong (pediatrician and previous specialist had said there was nothing there) I was having such a tough time. It was summer time and I wanted to be out having fun with my baby. But instead I was stuck at home because I felt guilty if I missed a pumping session. I was pumping to supplement and increase my supply. And honestly I was terrified of nursing in public because my baby cried every time I nursed her. I felt so selfish about quitting but I just didn't think I could do it anymore.  Fortunately this story has a happy ending...the dentist diagnosed and revised the ties and I am so happy to still be nursing my thriving almost 18 month old!   I'm so thankful to the LCs who first found the ties and to the ones who strongly encouraged me to get another opinion. My best advice is trust yourself! I knew there was something wrong and I wish I had pushed harder to get help sooner. My second piece of advice is to remember that with older babies it might be a while before you see the improvements. Fortunately my daughters weight gain increased and fussiness decreased in about 3 weeks but developing a comfortable nursing relationship took a really long time. I had been worried about my supply and feeling like a failure for so long that things didn't start feeling easy and natural for months. Now I love it and nursing is my special time to cuddle my busy toddler! I wish good luck to everyone who is thinking about having a consultation or doing the revision and to those who have just had it done! In our case it really made a tremendous difference!

~Sara Gagliano

Wow!

Had my tie released Friday by laser. So far all I can say is wow! My jaw pain has gone away, my neck and shoulder pains have gone. I can raise both arms above my head, I can turn my neck from side to side. My sinuses have been draining like crazy. My middle bottom teeth are also uncrowding a bit. I could feel them moving yesterday. I have not had a headache since Friday. Only downfall is my ears hurt but they have been popping like crazy, and of course my tongue hurts. I have quite the gaping hole under my tongue, but it feels just fine with the odd tylenol or advil. I have been massaging the area and doing the stretches. I went for some craniosacral yesterday and chiropractic adjustment. I slept like the dead last night! Both the chiropractor and massage therapist could tell the difference. I followed up today with the dentist- he thinks it's looking good. I had some concerns wondering if he clipped enough as I don't feel my elevation is as good as it should be, but his tech also looked at it and she said it's good. It will come with more stretching and healing. Not enjoying having to open it back up every morning, but it's been light enough healing that it opens with a good jaw stretch. 

~Melissa Cameron 

The bloat is gone!!!

So here's the difference in just a week after tongue tie revision has been done! I never thought you'd actually see it! This was her 2nd revision as the first reattached..I wish we hadn't waited so long to do it!

~Samantha Flint 

"I will never regret revising her tie..."

So my "baby" is now a big 2.5yr old toddler. She's #5 and we had a really rough start to nursing. For MONTHS I suffered in agony with vasospasms, pain and misery nursing. I am a LLL Leader and had a lot of access to IBCLCs. More than your average person anyways. But 7 IBCLCs, a couple pediatricians, an infant feeding specialist and a few more "experts" all really let us down with not one suggesting tongue or lip tie. 

At 7.5 months old someone random suggested it to me leading me to another IBCLC in the area who then directed me to Dr Ghaheri, the nearest provider to me but still 450 miles away. Long story short we flew at 4 in the morning to Portland when my baby was 8.5 months old. Took the MAX to his office for an appointment at 10:30am. She was revised and we were on a plane home by 2pm. 

We had gobs of bodywork before revision (from literally 2 days old) and some afterwards as well. I religiously did the stretches but I also was as gentle as I could be and worked very hard at making it a game for her. And slowing within a couple months the pain improved. It took about 10 weeks to be entirely pain free. More amazing is the other changes in her because of revision. Her whole body used to be like picking up a wooden plank! Her neck stiffness went away, her whole body loosened. She even just seemed more comfortable in her own skin. It's stunning! 

Since then she does have occasional regressions were her body or mouth will tighten up for a couple days. During that time it usually becomes a little painful for me to nurse but never like it was before revision. It's quite mild. And it always passes in a few days. Keep in mind this is now 1 year and 10 months post revision.

Her revision led to me thinking about ME. See I suffered from chronic migraines. Chronic like 28+ days per month, almost daily migraines. It was horrific. Low and behold we went back 13 months ago all the way to Portland for my own revision. Immediately following revision I had TWENTY ONE DAYS STRAIGHT migraine free. Seriously....3 full weeks when I generally never went more than a day or two at most without one. More amazing is the other symptoms it solved for me too that I didn't even know were because of a tongue tie. Insomnia for example. Heck it's even lowered anxiety, it fixed digestive problems, neck and back tension, and more. It's truly astounding. I do get migraines still but I have way more days without than with one. And they are way easier to treat. One dose of meds almost always knocks it right out. I too have regressions which are getting milder and further between. 

A lot of people here say the stories posted here are scary. My goal in posting is for you to see there are good stories too. My baby did not scream and cry post revision. She did not refuse to breastfeed. She was a little whiny for a few days. Days 5-7 were the worst but she still wasn't crying. She was just clingy. By day 10 she was back to normal. She did hate the stretches. That wasn't fun. I made it a game as much as I could which honestly felt laughable at first. I sang a song I didn't mind ruining for her while I did them....no Row Row Row Your Boat in this house anymore. And the game did become fun for her within two weeks. In fact she still likes to play it today! She admittedly is still wary of men with facial hair and white lab coats. Sorry Dr Ghaheri. And she definitely didn't like going back to his office for my revision. LOL! But she was fine. My revision was not painful. In fact I took ibuprofen exactly once and that was more because I thought I would need it. Bedtime the day of revision. I never did "need" it. Pain isn't a word I would use to describe my revision or recovery. My tongue was uncoordinated and that was super annoying when I ate for a couple weeks. And I yawned a lot for like weeks. *shrugs* Go figure. LOL! 

So just know that my experience is not unique. It's not rare. It's just that we don't always come back to post because when revisions go well we just move on. I would do revision again monthly if I had to. I am saving money to take kids 1-4 back to Portland some day. If you're on the fence remember my story. It was worth it. I still nurse my "baby" as she runs from thing to thing these days. She still stops to climb into my lap and ask for "nuh nuh Mommy". It's still her favorite thing, what she needs when she's tired or get hurts. We have that connection every day. My baby will wean.....we are likely more than half way thru our nursing relationship. And I will certainly cry at the close of this stage of my life. But I will never regret sticking it out those 8.5 months. And I will never regret revising her tie. Never.

~Jen Montz 

Huge improvement in the latch!

Latch pre tongue tie and and after, huge improvement for anyone considering having it done! No colic either as air was getting in through the bad latch!

~Zowie Burge