# Crooked butt crack??? Just got call from doc with results!



## san fran shan

I took my twins in for their two month check up and vaccines. The doc looked at their butt cracks and my daughter's has a crooked crease right at the top. She said this could mean she has a tethered spinal cord. Monday she will see a neuro sergion for a physical exam. From there they would recommend an MRI to see if her cord is tethered. If it is, she would need surgery to have the the tethered cord snipped. I am so scared she will need surgery. It makes me so sad. Even sedating her for the MRI freaks me out. Has anyone heard if this or had experience with this? If she has a tethered cord and it doesn't get fixed it causes neurological problems as she gets older. 

Also their vaccines were Monday and they are still fussy and not eating like normal. No fever. How long were your babies fussy after their shots?


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## Sunshine12

Have a read of this.

https://www.essentialbaby.com.au/forums/lofiversion/index.php/t194542.html


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## erikab922

My LO has both a sacral dimple and a crooked butt crack and the GP and nurse both said it's absolutely fine, lots of babies have it - crazy how advice is so different!


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## Sproglet

Robyn has a twisted bum crack and dimple too, the paediatrician spent a long time checking at her new baby check up (1 day old) but it's not been mentioned since.

I will be bearing it in mind when she's older though, if she gets any strange symptoms- there's a lady on here (BlueHadeda I think her name is) whose daughter really struggled due to occult tethered cord.


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## Mrsmitch80

My daughter had a tethered spinal cord and had the surgery. It's scary but it needs checking out, my daughter had a dimple that was checked by a hospital and gp, we were told that it was fine - well it was far from fine! A dr at our children's hospital noticed the dimple, checked via ultrasound and the diagnosis was confirmed by MRI.

If your lo needs surgery just remember that tethered cords can cause nerve damage if left leading to incontinence and loss of feeling in legs so its really worth it. I'm so thankful that a dr noticed my daughters dimple as we had been told on two occasions that it was fine!

Feel free to ask any questions xxx


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## scottiejunior

My lo has this and so does my oh! I was told by a specialist in hospital that its just a quirk- it's good that ur gettin lo checked out but hopefully it's also nothing


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## BlueHadeda

Yes, we too are unfortunately very familiar with tethered cord. :nope: My eldest daughter has no signs on her back. She developed normally until age 3 when we pottytrained. She just never stopped having the odd accident (about once a week). At age 4.5 she started having bowel accidents too, about once a month. Around age 5 we noticed she's developing slight foot abnormalities, really really slight only. At age 7 only was she diagnosed with an occult tethered cord (occult means hidden, thus not showing up on MRI). Between ages 5-7 she has been with about 10+ of the best qualified specialists and none of them could diagnosed her, even though some suspected tethered cord. The operation was a huge success and we've gained loads of function back, but unfortunately she has some permanent nerve damage to her bladder, bowels and feet. We deal with this every day, and there's nothing more they can do for her. :cry:

My 2nd daughter, 6 months old, also has a slightly crooked butt. I'm absolutely terrified of her having a tethered cord as well. Our pead is unconcerned though, even after going through the whole ordeal with my eldest. :dohh: So for now, I'm not pushing an MRI. But if she were to show _any_ sign (foot weakness or deformaty, bladder infections or severe constipation, etc.) I'll insist.

Good luck to your baby. It's awful that she needs sedation. But if it is a tethered cord, the earlier they catch it, the better chance you have of there being no permanent nerve damage. If I've known what I know now, during my daughter's first year of life, I would've almost happily have put her through the surgery before age 1. But don't worry too much just yet. By far the most "markers" on the back is actually innocent, and not indicitave of a tethered cord. Let us know what the dr says on Monday?

:hugs:


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## san fran shan

Thank you for all your replies. Blue, I am so sorry your daughter had to go through all of that. Poor thing. Mrsmitch and Blue, if we have to go further, I will definitely hit you up with questions. I had never even heard of this tethered cord thing before and was caught off guard. I am happy their doc noticed it and we have access to good medical care. I will update after her appt as soon as I can.


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## san fran shan

Not much happened at the appointment. The doc examined her and wants to do the MRI but not til she is four months old due to the sedation.


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## Mrsmitch80

That's great news, at least with an MRI you will get a reliable answer. Try not to worry too much about the sedation, they use a mask and gas for little ones usually, you will cuddle your lo and the anaesthetist will slowly move the mask towards their face whilst the gas is running so they become a little drowsy before its fully on their face although my daughter at that age would grab the mask and try to eat it so it never took long to sedate her! 

Then they wake your lo up a little before you are called in, by the time they're awake enough to know what's going on they will be having a cuddle in your arms! Honestly she will have no idea that you weren't there xxx


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## BlueHadeda

Thanx for updating us. Did the dr mentioned anything about his findings after the physical exam? Does she have any neurological deficits, or is the MRI purely just to rule out tethered cord for sure? It's good that they want her a little bit older for the anaesthesia, but just horrible that you now have to sit with this sword over your head for 2 months. :hugs: If you remember, please update us after the MRI?


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## san fran shan

The doc just said we needed MRI to be sure. She has no other symptoms besides the crooked butt crack. I'll update when the MRI is done. Thank you for your support :)


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## AmyB1978

Good luck San Fran Shan, glad it,is,getting checked out!

I also need some advice. My lo has what I swear is a slight dimple and her butt crack "continues" past where I think it should end, it's a kinda red line. It concerns me, especially as my DH had a sister who passed away as a child from a surgery relating to spina bifida. I showed the pediatrician and she says its fine but never seemed to really look at it. Since the last check up I also notice to hard/bony bumps kinda right where the butt crack ends and the sacral dimple, if it is one, begins. I want a 2nd opinion but don't know where to take her. DH is acting like I am crazy and tells me I should trust her pediatrician or find a new one. He also seems to think it is ok to leave it to be looked at again at her 6 month well baby (she just had her 4 month) but if there is something going on I don't want to waste time plus I already had her look at it (she did nothing more than a quick glance) at the 2 and 4 month appointments. 

Do I wait? Do I go back to her dr and demand she really look at it and have her referred to get it checked out further? Do I take her somewhere else for a 2nd opinion? If so, where?

Please someone help me figure out what to do! Sorry to the OP for stalking, taking over, but I searched for this and figured if I tag into your post people might see it.


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## margarita1979

Stalking this, as well. I didn't know there was such a thing as a tethered cord. I just happened to read this thread and then checked DS later that night. He also has a crooked butt crack. My doctor has never mentioned anything about it, but now that I think of it, she doesn't really flip him completely over during his exam. We just had his 6 month visit a few weeks ago and aren't due to see her again until 9 months. Should I call and book an appointment? Not sure what to do.

OP, hope everything goes well during the MRI.


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## san fran shan

Hi ladies! I think if you have any concerns definitely get it checked out or ask for a second opinion. I had no idea this was even a thing. I guess my doc routinely checks. She flipped both babies and looked. 

Emma's butt crack is in a Y shape as opposed to straight up and down. Her MRI is next Monday June 11th. I'm really nervous about her being sedated. I have these horrible thoughts that she won't wake up :( But I know it has to be done.


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## Feronia

Best of luck for the MRI. :hugs: 
My DD has a crooked butt crack as well (2 sacral dimples -- one larger), and my midwife noticed right after she was born. She examined them thoroughly, though, and said that they're closed and that there's no reason to get them further examined. It sounds like your doctor is recommending the MRI just to be safe.


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## Scottish mum

Oh I don't think my lo was checked for this? I'm in the uk. He's 6 months. Unless they did but I wasn't aware. 

I hope everything goes ok. You sounds like your a brave mummy and you'll get thought what ever the outcome is x


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## BlueHadeda

OP, good luck for next week!! And don't worry, the sedation they give is extremely light. More like a sleeping pill, if I understand it correctly. :hugs:



AmyB1978 said:


> Good luck San Fran Shan, glad it,is,getting checked out!
> 
> I also need some advice. My lo has what I swear is a slight dimple and her butt crack "continues" past where I think it should end, it's a kinda red line. It concerns me, especially as my DH had a sister who passed away as a child from a surgery relating to spina bifida. I showed the pediatrician and she says its fine but never seemed to really look at it. Since the last check up I also notice to hard/bony bumps kinda right where the butt crack ends and the sacral dimple, if it is one, begins. I want a 2nd opinion but don't know where to take her. DH is acting like I am crazy and tells me I should trust her pediatrician or find a new one. He also seems to think it is ok to leave it to be looked at again at her 6 month well baby (she just had her 4 month) but if there is something going on I don't want to waste time plus I already had her look at it (she did nothing more than a quick glance) at the 2 and 4 month appointments.
> 
> Do I wait? Do I go back to her dr and demand she really look at it and have her referred to get it checked out further? Do I take her somewhere else for a 2nd opinion? If so, where?
> 
> Please someone help me figure out what to do! Sorry to the OP for stalking, taking over, but I searched for this and figured if I tag into your post people might see it.

I've replied to your pm.



margarita1979 said:


> Stalking this, as well. I didn't know there was such a thing as a tethered cord. I just happened to read this thread and then checked DS later that night. He also has a crooked butt crack. My doctor has never mentioned anything about it, but now that I think of it, she doesn't really flip him completely over during his exam. We just had his 6 month visit a few weeks ago and aren't due to see her again until 9 months. Should I call and book an appointment? Not sure what to do.
> 
> OP, hope everything goes well during the MRI.

I would just wait until her 9 months appointment. My baby has a crooked butt crack, and they did an x-ray at 9 months for uneven hip fat rolls. It clearly showed the bottom spine, where there was no spina bifida occulta (opening in the bones). My eldest daughter had tethered cord without spina bifida occulta, but it's *extremely* rare. Almost unheard of. Usually, there will be a SBO noticed on an x-ray. I'm taking it as a good sign that my baby's crooked butt crack means nothing. 9 Months isn't bad timing in identifying a tethered cord, if it indeed turns out to be something. They only rarely operate before 9 months in any case, for a tethered cord. So I think you should be fine waiting until 9 months to get it checked out. And remember that though a sign could be indicating a tethered cord, most signs turn out to mean just nothing. :hugs:


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## san fran shan

Emma's MRI was yesterday. I was very anxious and scared but it went just fine. It was so hard to leave her there. They wouldn't allow me to be in the room when they sedated her. My DH and I went for a walk during the MRI to pass the time. It took an hour. When she woke up she was so sad and would cry, then fall asleep, then cry this sad weak cry. We gave her a bottle and she was better. After about 2 hours she was back to normal. I have an appt scheduled for Tuesday to get the results. I am not sure why it would take so long. I am going to call sooner than that and get my answers!!


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## AmyB1978

Glad the MRI went okay, let us know how you make out with the results.


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## BlueHadeda

Ah, poor baby. :hugs: It's hard seeing our kids like that. Pity you have to wait this long for the results!! Good luck, I hope she gets the all clear! :thumbup:


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## Midnight_Fairy

Wow never heard of this before! Jades bum crack is also a Y shape?


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## san fran shan

I had never heard about it before either. I would have never noticed it. My doc routinely checks and here we are!


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## All Girls

I;m hoping you get good results. 

M 3 year old had to be sedated for an MRI last week. She was bouncing off the walls before she finally fell asleep after almost an hour. She couldn't walk for 5hrs once she woke up. It was horrible to try to sedate her, i ended up having to be the one to give it and bribe her to the last. For the 4th dose she had to be pinned down. 

My daughter had the MRI on her brain as she went unconscious for 90 minutes one morning out of the blue. I thought she was dead. 

The waiting for the results is terrifying but please god all will be good. 


My 19m old has the Y shaped butt crack. She is under the care of the pediatricians an way due to getting an infection and sepsis when a day old. No one seems any way worried about the Y shaped butt crack except me. She can run around now, she was double jointed in the knees so was slow to stand and never crawled. She still cannot talk though. They kind of half laugh at me now when i mention her butt


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## Midnight_Fairy

I noticed a while ago as I said its like a snakes tongue! Drs never said anything though? X


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## staralfur

Aww, my DD had to be sedated for an MRI a few months ago as well. It's so stressful isn't it. I bet you're relieved it's done! 

It took 10 days to get the results back... such a long and worrying wait. I hope the results are good. :hugs:


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## Midnight_Fairy

Im going to have to book a docs app tomorrow now lol xx


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## AllieM

Hi ladies - I have some experience related to tethered cords as it is common issue seen when a child has a VATER diagnosis, as my son does. Tethered cord can only be definitively ruled out by an MRI performed after 6 months of age. It can be diagnosed before 6 months, but NOT ruled out. It is also not an easy thing to detect and I would urge you to get several opinions from neurosurgeons that specialize in tethered cord diagnosis and repair. As a PP mentioned, untreated tethered cord can cause irreversible damage such as loss of bladder and bowel control, and deterioration in gross motor function. The most common early outward sign is the sacral dimple, but many children have the dimple and do not have a tethered cord. Likewise you can have tethered cord without the dimple.


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## san fran shan

Thank you Allie, this is exactly what I have been told and read as well. I left a message with the pediatric neurosurgeon to call me back sooner than Monday! 

On a happy note, Emma got her 1st tooth and started crawling this week! So proud of her. Her brother isn't far behind and still rocking on his hands and knees.


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## san fran shan

The doc just called and Emma is fine!! No tethered cord!! So happy and such a releif. Good luck to the rest of you ladies! Thank you for your support.


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## staralfur

That's wonderful news!! :)


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## pinklightbulb

Fantastic news :hugs:


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## Tasha

Great news x


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## AmyB1978

Yay, so happy for the good report! :happydance:


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## AnneD

Great news!


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## BlueHadeda

Really wonderful news!!! And congrats on the crawling, and the almost-crawling babies!! Now, just go and enjoy them. :happydance:


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## Midnight_Fairy

Great news x my gp said jades is just a fold of extra skin x


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## Bevziibubble

Great news! You must be so relieved! :)


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## bonnie94x

I had a lump on my lower back when i was born. The hospital looked at it and said it was fine and to just leave it alone, so i did. I suffered several kidney infections and over 50 urine infections in the last 2 years. I went to so many doctors and they told me i had a small bladder and wasn't emptying properly which caused the infections and my bowel problems. I have now moved to America from england as i am half american. My mum noticed my lump had gotten much bigger. I hadn't noticed because i don't really look at it as it's on my lower back. I had really bad back pain the last few months but didn't think much of it. I went to a urologist complaining about my urine infections and as he was feeling my back, he noticed the lump on the bottom of my back (which has a hairy patch) and said its possible it could be pushing on nerves and causing your bladder problems. I got sent to have an MRI scan and it showed the lump was much bigger on the inside than the outside and it was 7cm and had grown into my sarcam (no idea what that is). They said my spine is not fully grown because of the lump that i was born with which is actually a lipoma. He diagnosed me with tethered cord syndrome. I never liked the look of the lipoma but it never used to bother me because i never had any symptoms. The symptoms started when i was 17 and i am now 19. They are really bad the last few weeks. I can barely walk anymore. I can't be on my feet for more than 1-2 hours at a time without feeling extremely stiff and weak. I have great difficulty holding in my urine and often have bladder and bowel accidents. My back is really painful lately to the point where even if i move the slightest bit, it absolutely kills and no pain killers except tramadol have helped me. I have been diagnosed with kidney reflux which was caused by nerve damage because the lump is pushing on nerves. I now have permanent kidney damage and scaring due to this. I have read online that alot of people with spinal cord lipoma's often have no problems until they're late teens or adult hood where damage is not fixable. It also says, lipoma's of the back should be removed during childhood to prevent any nerve damage in the future. I wish i had known this and so does my mum because i haven't been able to work for 2 and a half years due to my problems now. I am seeing a consultant in 2 weeks time to discuss surgery. Apparently after removing the lipoma, you go back to normal.. all your bladder, back, bowel, leg functions! I am so happy i have found out my problem after 2+ years of suffering and not being able to work. My advice to anyone with young children and babies with a lower back lump is to get it removed as a child. It probably isn't cancerous as most lipoma's aren't but should still have it removed because i made the same mistake and am now suffering. English doctors failed to ever find out the problem of my bladder symptoms over the space of 2+ years. Been in america for 5 months and they already found the problem and am waiting to be scheduled for surgery soon! American doctors are far move advanced!! Seriously though, i apologize for the huge paragraph but your daughter will be suffering much more in the future if you don't have it removed. She will end up like me in her teen years! Hope this helps people and i wish you all best!!


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## fxmummyduck

My sister was born eith tethered cord syndrome which wasn't diagnosed until 18 months...could have writeen above paragraph! She had a lot of major spinal surgery...kidney urethral surgery, hydrocephalus, nerve damage to bladder etc...But you would barely notice now!


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## agill

I wanted to post a message to all the moms who are potentially faced with tethered cord for an infant. At 3 months I noticed my daughter had a crooked bum (crease) and a slight redline with dimple. My ped didn't even see it during the exam. When I brought it to the ped attention it was sent right away to nuerosugery dept. This was extremely scary. The NS dept called and said they wanted to do an MRI on my daughter to confirm. After months and months research on this topic I quickly became an expert. The catch with MRI was that she would need to be sedated. This was also a concern. Nonethless, wanting her to have a full healthy normal life, I decided to go forward. After a very stressful MRI (having her sedated & tested) Nervous and anxious results returned NEGATIVE! She has no evidence of teethering or spinal concerns. My advice to moms: I was convinced she had it because of all the research. Stay off the internet (except while viewing this of course) and get your infant an MRI. The MRI is the gold standard, not ultrasound. It is better to be safe than worry! Wish you all the best. I wanted to share this to give others hope who are stressing just as I was. Peace.


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