Starting the Metopic Journey....

[monicaschafer]

I was referred to this site a few days ago by a friend of a friend....it has been a huge help in beginning to understand what we may or may not be facing (thank you emp!), and encouraging to hear many of the stories posted.

Baby Charles ("Chaz"), my second child, is going on three months. At birth the pediatrician noticed that his frontal plates seemed to be one on top of the other. At his two month appointment she sent us for an x-ray session, which confirmed that his metopic suture had fused. I really did not expect this, as I thought for the first two months of his life that his head was just squished from the birth and it would eventually push open with brain growth. Since that appointment I have been researching and worrying and waiting for the next move. We are being referred to St. Justine hospital in Montreal (there is no specialist in our area), but they have yet to contact us with an appointment date.

I will post pictures soon to get your thoughts. Chaz has the ridge no doubt, and above his brow there are dents. The top view is where I notice the most abnormality, as he really has quite the perfect egg shape going on with a very narrow forehead (mind you, I did not think any of him looked abnormal until I knew what was going on....now I am analysing him and every other baby I see). Front on he seems like a mild case to me, but from the top I am not sure. Is there anyone out there who has had surgery in Montreal for craniostenosis? Are there any Canadian doctors that use the scope for the surgery? I would love to hear what you have to say.

I am also interested to hear about the heredity factor. We are still uncertain, but it seems my husband may have a mild, undiagnosed sagital stenosis....he for sure has a ridge there that he has always been aware...not obvious symptoms.

Thanks for taking the time and I look forward to hearing from you.

Monica

[dannlark]

Welcome to CK!! So glad you've joined us but not glad that you've got to get on the crano coaster. It's a VERY bumpy ride, but you won't ride it alone here. Were all there riding it with you.

My son has surgery to correct his metopic fusion just shy of 8 months ago and is doing amazing well. Please take a look at his photos in my profile albums if you'd like. Your son's egg shaped head sounds like Ian's. He had that too. Not the usual triangle shaped forehead from above, it was rounded but very narrow.

Ian had genetic testing done on him and it came back normal as we figured it would. I truely believe it's because of his position in my womb. He had his head jammed in my pelvis for most of the pregnancy.

I can't help you with the Canadian factor as I'm in California, but there is a whole crew of Canadians here that I'm sure will be a big help to you. Hang in there Mommy, it's a scary time, for sure, but they do so well if surgery is necessary and you won't go it along...

[Jenny]

Welcome to CK! Glad to have you aboard and Lark saidit perfectly.. you're never alone here..

LOL on the headpicking. You're part of a huge club!


I hope you get some answers soon. The waiting part is the worst!

[Mother of boys]

Welcome to CK! I can understand your worries and concerns. Hopefully you will get some answers soon. My son had surgery for sagittal back in October and since then has developed a ridge on his metopic suture. We are waiting to see if it gets worse, but hopefully it won't and he won't need another surgery. I am sure you will get some answers from other metopic moms.

Take care.
Pam

[Janet]

Hi there.....

My daughter had metopic surgery 19 months ago at sick kids hospital in Toronto.....they only offered a CVR/FOA....they don't to endo surgery there.
She had the surgery done when she was 10 months old and did great!!

[*Jessica*]

:huggWelcome Monica! My son is Metopic as well and very close in age to your baby! Please check out his album to compare head shape if you would like! We are waiting on our surgery set for June...since Jeffrey has the trigonocephally, he will need the full CVR, no endo procedure for him. Just wanted to say hello, you and Chaz (and whole family) will do just great!!!

[emp]

HI Monica(and Chaz).
I am glad you logged on here, it has been such a good source of info and support for me so far.

[Monica]

Hi Monica, I'm also a metopic mommy named Monica. Florence just passed her 1 year cranioversary on April 9. She has done absolutely amazing since then. We don't know of any genetic reason, or even any reason during my pregnancy. Though we can tell now by looking at her ultrasound pics that it was already fused even then. Sometimes things just happen. Florence has some pictures of her scans and preop/postop comparisons in her profile if you want to take a look. I'm glad you found us and hopefully you'll get an appointment soon. Hang in there and welcome to CK.

P.S. My oldest is also named Charlie....

[*jules*]

Another metopic mommy here to welcome you! So glad you found us. Hopefully the answers and support you get here will help you thru this difficult time. Can't wait to see the pics! :)

[Mindy]

Hi and welcome to craniokids. Sorry you are on this cranio journey, but please feel comforted by the fact that these kids do amazing! We're here to support you!!

[Josie]

Hi Monica,

sorry you have to be on this board... I just wanted to tell you my son was metopic and had his surgery at Ste-Justine's with Dr. Bortoluzzi. I think she is the only surgeon performing that specific surgery there (well, there's also the neurosurgeon, but I can't remember his name. Dr Mercier, I think, but I could be mistaken). Anyway, they are a GREAT team. When you start meeting with them, you'll be taken over by a whole big team of specialists in every field, and you do meet with a genetics doctor (whatever they're called). So he'll really be able to fill you in as far as heredity goes. I hope you get an appointment soon.

If you have any question, please, do not hesitate to contact me, either on this thread or by PMing me. I'll be happy to help you any way I can.

[monicaschafer]

Thank you all for writing in and I am learning so much! Jo, it is great to hear that there are people on here who have gone to St Justine's for the surgery. Do you happen to remember how long it took you to get your first appointment with "the team"? I have been waiting for them to call for about 10 days now (my pediatrician here in Sherbrooke is referring). Have you ever heard of Dr. Farmer working out of St Justine's?
I am going to try posting some pictures tonight, so please take a look at my sweetie and tell me what you think....I do not think I have any bird's eye view shots which would clearly show his egg, but I will take some soon and add them. The front on shots you should be able to see the ridge and the dents above the eyebrow....please let me know what the experts think!

Monica

[Janet]

Monica.....Fiona had the egg shape as a baby.....does Chaz's head look like this?

http://i149.photobucket.com/albums/s76/JanetM73/IMG_0144-1.jpg

http://i149.photobucket.com/albums/s76/JanetM73/IMG_0675a.jpg

[monicaschafer]

The shape of his head in the front is very similar to Fiona's pre-op picture (she is lying on the floor). I will take one and get it on here tomorrow.

[Mindy]

I just replied to your PM. I think Chaz looks to be moderate. What a handsome little man you have there!!!

[Janet]

I just looked at the most recent pics....reminds me of Fi-bug when she was a baby...sorry that you are going through this. :hugg

[monicaschafer]

Just to update you that we now have our appointment for an initial consult with the neuro/craniofacial team at St. Justine's in Montreal-May 4th. Questions for you....what does full "CVR" stand for in regards to the surgery? Also, what is considered the ideal time to perform the surgery? I have read 8-10 months, but see a few of you had it or will have it earlier than this. Thanks!

[Janet]

Here is a GREAT thread to read:

http://www.craniokids.org/support/showthread.php?t=6426

Sick kids recomends 10 months - 1 year.

[dannlark]

Did someone tell you that a full CVR was needed or something? For metopics usually it's an anterior CVR and a FOA (frontal (or fronto) orbital advancement) that are done to correct the forehead and eye brow placement. Don't see why a full CVR (meaning the full top of the head) would be needed?????

[monicaschafer]

Larkin....no, I am just trying to figure out the lingo....seeing what CVR stands for and what some of the other abbreviations for the cranio surgeries mean. Thanks...I will read the thread Janet posted.

[Janet]

Fiona had exactly what the drawing that Sadie made for her surgery, they put everything back together with dissolvable plates and screws.

[emp]

MOnica, I am glad you got the appointment. I will send you an email later on (when Gavin is asleep!) to get the full update (and give ours).

Hug to you, glad you are at the next step.

[sharontomos]

HI Monica

I'm another metopic mum - just returned from appt with surgeon today after my son had CT scan yesterday. Awaiting date for op. I don't understand the lingo either but the surgeon did suggest that he would remove the bone from the top of my son's head to make a new forehead and brow and use the existing forehad bone to remould the top of his skull!?!?? He said that he would explain the procedure in more detail a little closer to the op date. Anyway, I am in the UK and from what I've learned on this site procedures do differ from hospital to hospital, let alone country to country.

I'm sure you will get all the answers you need at your imminent appointment as well as the more experinced people on this site.

:hugg

[Josie]

Monica,

I just PM'd you before reading your update! SOOOOO glad you finally have an appointment. Nope, I haven't heard of Dr Farmer. Is he/she a neuro or plastic surgeon? Of course, my son had surgery 5 years ago, so a lot may have changed since.

[monicaschafer]

Thanks Josie for all the information. The names you gave me for the doctors in Montreal are still the same....Mercier was the other craniofacial surgeon as you thought. (;

[Monica]

Florence had her surgery at 4 months. Our ns recommend 4-6 months. The ps wanted to wait until closer to 6 months, but said as long as she had doubled her birth weight, she would be fine. It's all turned out great, I think.

[monicaschafer]

I am hoping that Chaz's surgery will not have to wait until one year of age (he is just three months), as I feel I will spend the next two hundred and sixty days staring at his head if that is the case. I am only off of work until September, and if we do have the surgery then I would much rather be off and able to dedicate all of my energy to my family. From what Josie says though, the doctor he will see on Montreal operates at one year. One more week until our meeting with the neurosurgeon team, so we will get a much better idea at that point.