Trigonocephally - to operate or not, that is the question

[TJmom]

Hi everyone! I found this site when my pediatrician thought TJ had bilateral lambdoid ridges. CT completed and find out that nope, he has a brain deformity, we deal with the horror of that for a few months and now Dr. Kelly sees him and says oh, and by the way he has trigonocephally. As far as severity he gave it a 5 out of 10, not sure what that means really. We saw Dr. Tulipan the same day. Both Dr. Tulipan (nuerosurgeon) and Dr. Reimchisel (neuro/genetics) said TJ does not have any pressure on the brain (we have had a MRI too). TJ is a little behind on develpment (due to abnormal brain development) but we don't feel there is any reason he won't catch up. I would love for you all to take a look at his pics and give me advice. Both Kelly and Tulipan said to think about it because it was a major surgery and then let them know, does that mean it is not necessary? Has anyone opted not to do surgery and if so what happened? We also email Dr Fearon but have not heard back. Thank you for this site!!

[kalimom6]

I see a little trig. My sons was severe so I am not much help. Your son is a cutie.

[Monkey'sMommy]

I also see some mild trig, but would be interested to see what Dr. F has to say. My son was a mild metopic and we ultimately chose surgery for him. I am on my way out to run some errands at the moment, so I can't write as much as I'd like to. But feel free to check out my blog or the short version of Monkey's story (links below, in my signature). Hopefully you will find some helpful tidbits in there. Good luck and keep us posted!

[TJmom]

Thank you both for looking at TJ's pics and giving me your thoughts. Kristin, it sounds like your story is very similar and it is reassuring that there was no second guessing. Thank you!

[Katie]

What a doll your son is! I can see it more from the front than I can the top. I wish I had some better advice for you, but all I can offer is to tell you to read the stories of others and go with your gut. Get multiple opinions if you need to. We have quite a few parents here who were given the option of surgery, some did it, some didn't. I think some of the questions you should ask are weather or not there's any potential of it causing delays or pressure in the future, and if his head shape will likely get better or progress further in to a triangular shape. Good luck and keep us posted

[gijohnnysgal]

I am surprised Dr. Kelly did not want to do surgery if he has trig. My experience with Dr. Kelly is that he is very conservative and a wonderful surgeon. He does not suggest surgery unless it is needed. If he gave you a choice, I would guess that he doesn't feel surgery is necessary. I don't see the trig myself. My son's trig was very obvious.

[KennysStory]

It looks pretty mild to me -- so did my son Kenny's (at the begining) - then it started getting more prenounced. We opted for surgery, and by 6 months his head was very triangular. I agree, get a second opinion if you can, but I am sooo glad we did surgery. Good luck with your decision.

[Alan Gore]

He is definitely a cutie! Mild trig is what I can see. To operate or not operate, I am sure your Drs will help you decide. We never though our son Daniel's trig was severe... But it turned out it was. Our surgeon really told us there was no choice.

[TJmom]

Wow that is great that your doctors were so helpful, good to know they won't let us make a mistake. We got a second opinion from Dr Fearon and he felt it was minor enough to wait and see. I think that is what we will do since we really don't want to interrupt his therapy for that long. He is really making progress. Thank you all for the advice and taking the time to look at the pictures and responding to my question. You are all so wonderful and I greatly appreciate the words of encouragement!

[*Jessica*]

I just wanted to add my welcome to the pile. I also agree that I would wait, looks very mild thankfully. My son was also moderate/severe and we were not given an option by Dr. Kelly. It was obvious that it was needed.

Best wishes and I hope his therapy continues to go well!