Neurosurgeon appt today-Cosmetic!!!?????!?!

[beej74]

Hi everyone, I haven't been on in awhile. You know how it it...you get caught up in day to day stuff and you lose touch. Anyway, Tommy had his CT today and we had an appt with the CFS and I met with the Neurosurgeon for the first time. I just need your opinions on things. The CFS and the second opinion I got back in August both agreed that Tommy had moderate Trig. The neurosurgeon today said that it is mild and that I don't HAVE to have surgery, it is strictly cosmetic. He said that is it really up to us and our CFS. We are already scheduled for March 28th, but I want to get your opinions. That word "cosmetic" makes me feel foolish...like I'm putting my baby at risk for something he doesn't have to have. Everyone keeps telling me that his trig doesn't look bad. I think if you look at him straight on, it's not too bad, but from other angles, the trig is apparent. What do you guys think?

Also, he seems to have some transient crossing to his eyes. We saw Ophthalmology last week and he couldn't duplicate it (of course). He said that he did notice that Tommy has some trouble moving his eyes toward the outside, which can make him look crosseyed. He said that the muscle that controls moving the eye out is controlled by cranial nerve 6 which can be affected in Metopics. He said that it may or may not get better with surgery. The Neurosurgeon disagreed and said that it is not from the nerve and that Tommy doesn't have any increased ICP and that it would be from a muscle and that his CVR won't correct it. (The Ophthalmologist said it wasn't from the muscle and that it couldn't be exercised-it was the nerve). He said that Opthalmology can patch it or do surgery to tighten the muscles if it doesn't get better over time. Do any of you have any input?

I'm adding some new pics...some of his CT and just some to show his Trigonocephaly. Let me know what you think. Thanks.

[Harper's Mum]

I'm new to this so don't have much experience in this area. I would be inclined to believe the CFS an Opthamologist as they are the specialists in those areas but IDK. Everyone says my daughters head looks fine but I can see the trig, I just wonder how things will change when they get bigger, will the trig get worse and is there a chance they will get ICP in the future. I'm sure they wouldn't do the surgery if it was only for "cosmetic" reasons. Maybe you need to see another neurosurgeon and get their opinion?

[Janet]

Hi there....I got your message, and I agree that his CT looks a lot like Fiona's, she was moderate. :hugg
People used to tell me that Fiona didn't look "bad" head on as well. I had to let them know about the problems that could happen if we didn't have the surgery done, and plus she would look different, and possible get teased (the NS words).
If I were you, I would get a second or even a third opinion. :hugg It looks more then mild to me.

[beej74]

thanks, we are scheduled for March 28th and at this point I really don't want to change Dr's. I'm happy with my CFS. I didn't dislike the neurosurgeon, I just think that he thinks that neurologically, Tommy will be fine either way, so it's up to us as to whether we want to do it. But I have looked at other "milds" on here and they seem to have flatter foreheads and less of a point. He seems more moderate and I am concerned that as he gets bigger that it will be more apparant (although I think he looks better now than 2 months ago...maybe because he was a preemie then and now he has some chub to him?) Just wanted to see what your opinions have been and if you all have encountered the "cosmetic" word.

Also, my neurosurgeon is apparantly one of the top in the country. He says that since it's only the metopic suture that the brain still grows, jut in other directions. He says that with one suture synostosis, the brain isn't confined so there won't be increased ICP. He said that there is a link between Metopic and developmental delays (which I had read), and that surgery doesn't fix this. They either have delays or they don't, but that corrective surgery doesn't fix it. What have your doctors told you can happen if you don't correct it? I'm just needing to feel that we've made the right decision. Thanks!

[beej74]

Also, I had a second opinion in August with a Neurosurgeon at a different hospital who said it was moderate as well.

[Janet]

Our NS was very straight forward, cut and dry....not the best bed side manner. I actually only met and seen him once. I didn't even see him the day of the surgery.

[beej74]

so you do believe it is warranted, right? I just need a little support today... :)

[Nezzy]

That nuerosurgeon does not sound very experienced in craniosynostosis in my opinion. I have looked at your pics and he is definitely at the least, moderate metopic. He has definite trigon. I don't mean to sound harsh, but I really feel your son needs surgery. I just don't want some doctor trying to make you feel guilty about it. I believe you are doing the right thing. And for him to say that ICP can not occur with single suture is outright wrong. There have been several mommies on here who's son or daughter had surgery for single suture and ICP was discovered. This is not solely a cosmetic issue. And secondly, even if it was cosmetic...check out some of the stories from untreated adults on here. They are all desperately seeking help for correction. Sorry to rant, but I am just so tired of some of these docs out there making mom's feel guilty and saying it is "just cosmetic". You are doing what is best for your son.

[beej74]

Thanks Heather. I needed that. We're definitely doing it. I was second guessing myself and I'm not anymore. I know that he will be in good hands at Children's Hospital and I just want March to get here so we can put it behind us! Thanks!

[Nezzy]

You are very welcome. You hang in there!

[Janet]

The one thing that I kept thinking before the surgery was....I didn't want her to resent me for not fixing something that was fixable as a baby. You are doing the right thing :hugg Don't second guess yourself or let your NS second guess yourself. :hugg

[QueenB]

You ARE doing the right thing. One of our deciding factors was our NS saying something along the lines of, "there are no scientific studies linking metopic cranio to delays but common sense tells me that when the brain is trying to grow against a restriction that it IS possible"!! (this was also in regards to "trig" and a smaller frontal space) DO NOT second guess yourself :)

[*jules*]

Hugs Bobbie Jo. I'm sorry you're second guessing yourself....I think many of us have done that as well. It's a difficult choice to make, especially when an expert uses the term "cosmetic".

Please forgive me for saying so, but I believe your son would def benifit from surgery. My son was considered moderate metopic, and I think your son's trig is more pronounced than his was. He's such a cutie and I'm sure anyone who has no experience with cranio will tell you he looks great. My son was cute as a bug too and no one I knew could see anything wrong with his headshape.

Even if it would never affect his brain and/or development, I believe it would def cause issues with his self esteem later in life. You're doing the right thing IMO...trust that mommy instict and hand in there.

[Mindy]

I'm sorry that you are doubting the recommendations from the neurosurgeon, but, unfortunately his remarks have been heard before. It seems that NS are hung up on the "cosmetic" benefit to surgery, but do not look at the emotional/psychological factors that the child will have by looking different.

Can I ask you if you are using CHOP? I see you are from the Phila area and I am also. We have been to CHOP for consults on my son who is mild metopic. I think Dr. Bartlett (the CFS) was very educated and helped to explain why surgery wouldn't be necessary for my son. But, the NS (Dr. Storm) was a complete, pompous, jackass. We ended up seeking another opinion in NY, but I do believe that CHOP's docs are top in the field. I think they are used to seeing the most severe of cases, that when they see a child that isn't so severe, they tend to not push for the surgery, unless its truly indicated. In my opinion, surgery for your son is indicated as he is moderate. He does look different from the general pop in that he has trig. And, that alone, along with the unknowns of how the brain may be impacted, would seal the deal for surgery for me. Go with your gut and do not look back. You are doing the best for your child and he will thank you for it one day.

Lean on us whenever you need to! :hugg

[beej74]

Thanks Mindy, yes we're at CHOP. We are using Dr Bartlett and Dr Sutton (neuro). I feel alot better now.

[mummybeelee]

:hugg

I think the other ladies have covered what I would say about the possible restrictions on a brain that is forced to grow in a different direction/shape. I just also wanted to add that I think doctors using the word "cosmetic" is misleading. IMO the proper term is "corrective". The surgery is not being done to improve the appearance of the skull but to correct the shape, appearance and function. Trigon caused by metopic synostosis is an abnormality in the skull shape and the CVR surgery will correct the shape. That will correct the appearance of your son's skull and face and correct the shape of the skull and give the correct shape and space for the brain to grow.

Cranio surgery is not comparable to cosmetic surgery (ie boob job, nose job, face lift etc) it is more closely comparable to corrective surgery (cleft lip and palate repair, correcting clubbed feet etc)

This from Wikipedia is a good description I think (although they use the term reconstructive rather than corrective):
Reconstructive surgery involves reconstruction of an injured, mutilated, or deformed part of the body. Cosmetic surgery is done to improve the appearance of an otherwise normal structure.

:hugg

[audra15]

When I saw the title of your thread I was wondering if we had have the same NS (We do!) It seems like others have already eased your worries but I also feel like you are doing the right thing. Dr. Bartlett seems to have a lot of experience with cranio and has performed surgeries for several babies on here.
We only worked with Dr. Sutton but he also told us it was cosmetic. (Kyra was sagittal.) A lot of us have our issues with him. I can say, however, that he is a top pediatric NS so if I were you I would feel comfortable with him completing his part of the surgery safely. I believe most of the reconstructive work is done by the CFS anyway. I will always be grateful to Dr. Sutton because he performed Kyra's surgery safely and I feel like he chose the best surgical option for her individual case. His bedside manner and other factors leave a lot to be desired though.

Stay confident in your decision. It's hard and of course we all want to hear that surgery isn't required but in your gut you will know what is best for your baby.

[krause3]

I read your post this morning and then we went to see the NS. My husband and I had talked about it prior and decided that we wanted our daughter to have the surgery even if he said it would only be 'cosmetic'. And when we talked to him he did say it would mostly be 'cosmetic'. (Although, I agree with Bee, I prefer the term corrective.) He did say hers was mild, but it is noticeable. I told the NS that I wasn't really worried about her appearance now, because I know she's still very cute, but I'm worried about what it would do to her self esteem and confidence later and I don't want her to go through any more stress in her teenage years than necessary. After I said that, my husband asked him his opinion and he said that he would opt to have the surgery.
Of course, now that we've decided to do it, I'm a little tense also, but reading through what everyone has told you makes me feel better too.

Trisha

[JDBtrigonobaby]

The Ped. NS here said that Joey didn't have to have the surgery either. He said it was cosmetic, and that really messed us up mentally. Why put our son thru cosmetic surgery? But then, when we met w/ Dr. Fearon, he assured us that what he does is reconstructive surgery. In his words, cosmetic surgery is taking something beautiful and perfect and making it more beautiful and perfect. He said that he actually reconstructs the whole shape of the head. He said that Joey needed the surgery. He also said that, aside from other issues he may or may not face, like it or not, this is a cruel world and, although he looks adorable now w/ his little funny point, imagine him as a teenager, trying to work up the nerve to ask a girl to prom, or going to college or on a job interview. There is so much in this world that can make us all insecure, why not give him the best chance I possibly can? I couldn't sit back and do nothing.
We don't regret our decision at all. You are doing the right thing.
And regarding the eye thing, our initial neurologist mentioned something about his right eye not turning all the way out, but the ped. NS didn't see anything. And, since surgery, I really don't notice anything. He looks less cross-eyed. After the holidays, I'm going to make an appointment for him to be seen, just as a precaution.
Just breathe! You're in the right direction!!! :)

[beej74]

Thanks Melissa, I've been following Joey's pics and he looks so great! I feel so much better now. Beth (above post) mentioned that she saw the same NS as us and he said the same thing to her. I'm glad I have you guys on here to bounce these things off of and get your support. I know we're doing the right thing, you just second guess yourself when it comes to making a decision for someone else...especially our own kids! I know that alot of people on here go to Dr Fearon, and some people have told me that he'll give his opinion if you send pics to him, so I actually did that too. I know he's extremely popular, so I don't expect to hear from him, but if he does write back, that would be great! I know everyone has been so pleased with him. That said, I didn't dislike my NS, just needed the reassurance, which I'm happy to say, I've gotten. Thanks again. Now is just the waiting time... I wish it would just get here. One question I forgot to ask. Our CFS told us at our first appt at 2 mos that we would ned to get button down clothes for him so we don't have to put anything over his head. Do you know how long that lasts? Not a major question, I know...lol!

[audra15]

I think I only kept Kyra is button down clothing for 1-2 weeks after surgery but I can't remember exactly. Then I started putting her in regular shirts or onesies that had wider or stretchier necks so I wouldn't be yanking something down over her head. I was REALLY stressed about the clothing thing and was prepared to spend a small fortune on clothes that don't go over the head but it wasn't as big of a deal as I initially thought. You probably won't feel much like going out with him for the first week after being home anyway because you will be tired so zip up or button up pjs that he already has are great!

[Nezzy]

Yeah...if you just make sure you have 5-6 outfits that button or zip you'll be fine. I'd say do that for about 2-4 weeks.

[chastity77]

I have 13 month old twins. One of my twins has trigonocephaly. My pediatrician pushed for a CAT against my will. At our first appointment with the neurosurgeon they told us the diagnosis of trigonocephaly was just a fancy word and that surgery was not necessary. My pediatrician did not like his answer and sent us to Miami Children's Hospital. There they told us immediately after looking at him that he would need surgery. I was shocked! This all happened yesterday - I have been on the internet ever since. I found this blog - hoping to get answers. I was under the impression that the procedure was cosmetic, but our surgeon said absolutely not - moderate trigonocephaly is an abnormality and if untreated could lead to social, psychological, and self esteem issues later in life. I wanted to know if anyone has any info on what his head would look like later on life without surgery. I think he will thank me later on - it is just such an invasive surgery - I am so conflicted, but think I will go through with it. Also, I am concerned about some of the stuff I have read about low IQ and ADHD that can be associated with this condition - not corrected with surgery.

[Janet]

I have 13 month old twins. One of my twins has trigonocephaly. My pediatrician pushed for a CAT against my will. At our first appointment with the neurosurgeon they told us the diagnosis of trigonocephaly was just a fancy word and that surgery was not necessary. My pediatrician did not like his answer and sent us to Miami Children's Hospital. There they told us immediately after looking at him that he would need surgery. I was shocked! This all happened yesterday - I have been on the internet ever since. I found this blog - hoping to get answers. I was under the impression that the procedure was cosmetic, but our surgeon said absolutely not - moderate trigonocephaly is an abnormality and if untreated could lead to social, psychological, and self esteem issues later in life. I wanted to know if anyone has any info on what his head would look like later on life without surgery. I think he will thank me later on - it is just such an invasive surgery - I am so conflicted, but think I will go through with it. Also, I am concerned about some of the stuff I have read about low IQ and ADHD that can be associated with this condition - not corrected with surgery.

My daughter was moderate metopic, and the dr is right it's NOT cosmetic. I'm sorry that you are going through this, but you are making the right decision to go ahead with surgery. :hugg

[Monkey'sMommy]

I just want to chime in about the eye issue. My son looks as though his left eye is turning inward. We just brought him in for a thorough exam with a pediatric opthalmologist who has seen lots of kids with metopic cranio. He told us that Monkey's eye isn't actually turning in, but rather it is the asymmetry of his face that makes it look that way.

He gave me a great brochure to take home that shows a closeup of the eyes of a baby with an eye that is crossed, and one whose face is asymmetrical. If you look at where the reflection of the flash is in the picture, in a child whose face is asymmetrical the flash reflection will be in the center of the pupil in both eyes. In a child with an eye that is truly turning inward, the flash reflection in that eye will appear to be in the white part of the eye.

This is the brochure the doctor gave us which helped me a lot.

https://secure.aao.org/pdf/051136_Sample.pdf

[beej74]

I just looked at this. Very interesting. Gonna find the camera and take some pics!