Confessions of a Post-Op Metopic Mom [Archive]

xl1200c

09-15-2008, 07:38 PM

<o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="City"></o:smarttagtype><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="place"></o:smarttagtype><o:p></o:p> I was so prepared for the surgery because of all the stories & photos, and after the surgery he looked so great – gigantic forehead. This is what I was expecting, and I loved it. He finally looked like my other child! But I wasn’t really prepared for the rest of my post-op experience. My son is fine, but it is not what I expected, and I don’t think I’m the only one this happens to. I want to write this as a way to maybe help others prepare. (to see our pre-op and surgery story and photos, click here: http://www.craniokids.org/support/showthread.php?t=2139 )<o:p></o:p>
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I thought that the surgery would be a finish line for us. Now I realize that I will always worry about his head shape. For the first few months, I was elated. His head looked perfect to me. (There was a brief time where his plates stuck way out, but the overall head shape looked great.) <o:p></o:p>
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<center>[I]David 1 week post op:
http://i212.photobucket.com/albums/cc102/xl1200cate72/2007Dec25-018.jpg<o:p></o:p></center>

Slowly I learned that this shape can be deceiving because there is still so much swelling for up to 6 months, so we weren’t truly seeing his new look yet. I feel like this set us up for a fall in a way. As the swelling went down, his forehead began to look narrower. I was concerned that his metopic shape was returning. I ask myself “How am I to know if this is the head shape the surgeon’s meant for him to have?” What looks like regression to me, looks like perfect progress to his surgeons. They have seen so many more cases than me, and they know what to expect long-term, so they are comfortable. I only have the slowly developing history of my one post-op child who I nervously watch and photograph to no end. “Better safe than sorry” means I worry, ALOT.<o:p></o:p>
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At 4 months post-op I was concerned enough to contact our surgeon. The reply was “We never try to make the forehead square or flat, since that is not how a normal forehead is shaped. He will, like all kids, have some curve to the forehead. I think you have been seeing some mild residual swelling in the temple regions that made him look "flat". However, the current shape looks great.”<o:p></o:p>
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<center>[I]David 4 months post-op:
http://i212.photobucket.com/albums/cc102/xl1200cate72/2008-0423-001.jpg<o:p></o:p></center>

A few more months went by, and his forehead is even narrower, he now even has a ridge. Our 7-8<sup>th</sup> months post-op were the worst for worrying. Again I wrote to his surgeons. The NS replied “After we expand the frontal bones the brain really has the opportunity to take all the room it needs, and I’m confident it has done this. The midline of the forehead looks quite good to me on the photo. Often the sides still taper back a bit to match the back of the head.” The CFS replied “Many kids with metopic synostosis have excess soft tissue in the central forehead that can give the appearance of a persistent midline “ridge”. I have tried in the past to thin this fatty layer, but it can create a contour defect. Do not worry- this will not affect his intracranial volume and he has plenty of room inside. Remember, the subtle changes you see are only really visible from an apical (top down) view and are not likely to worsen.”

<center>David 7 months post-op:
http://i212.photobucket.com/albums/cc102/xl1200cate72/2008-0702-010.jpg<o:p> </o:p></center>
Sometimes I look at him and he seems fine. Other times it seems like it looks terrible. It is so gut wrenching because we put him through SO MUCH, and figured we would have a lot less to worry about AFTER the surgery. The waiting for surgery was so difficult, and now I see that waiting to see the long-term results of the surgery is no picnic either. <o:p></o:p>
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I have felt alone, and a bit embarrassed to post pictures of my son (because I feared I had failed him). I was insecure, and afraid to post for fear that others confirm my fears, or afraid I would be pitied or told to rush off to my doctor. I was being as patient as I could, and in some cases, the most productive thing to do is wait. I truly feel this is where we were for the last 2 months while waiting for our post op appointment. (Please note: I am not implying that one shouldn’t call the doctor with their concerns, sometimes unfortunately there is truly an issue that needs to be handled. I’m just sharing where my family is currently at.)<o:p></o:p>
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And it turns out my family is not so alone. In just one week several parents have written on the boards with similar concerns and related topics. I asked for permission to use these quotes, I think they are very powerful: (if anyone minds the way I used them, please let me know and I can edit them out)<o:p></o:p>
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Regarding Quintin’s pictures: http://www.craniokids.org/support/showthread.php?t=6085
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Sadie: (three.little.boys) (Quoting from Dr. Fearon): “If, it is bone loss, it is likely that it would fill back in. I suspect that this will get better on its own and will not require any treatment.”<o:p></o:p>
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Janet: "The same thing is going on with the left side of Fi's head!!! They told me it was because the left side is growing way too slow...he said that he's never seen it before."

From Amy (camsmom): “<st1:city w:st="on"><st1:place w:st="on">Camden</st1:place></st1:city> also has a place where bone dissolved instead of healing in and he said usually it takes care of itself over time.”<o:p></o:p>
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From Lisa: “Bradley has something really similar on his head and now I am worrying about that. But I am assuming since his surgery was so recent that it is just part of the plates joining.”<o:p></o:p>
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From <st1:city w:st="on"><st1:place w:st="on">Elizabeth</st1:place></st1:city>: “I am going to try to get some good pics of Isaac's noggin tomorrow because he has what looks like similar "ridging" to me”<o:p></o:p>
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From Amy(amizzle): “This morning I thought of something Dr. Jimenez told us when we were looking into surgery options.... He said that sometime with the CVR the bones grow in a different rates (because they are from different parts of the skull, which each have their own DNA{or something} telling them how and when to grow and such). Is this why some of your mommies are having a few lumps and bumps with your babies as their bone grows in?”<o:p></o:p>
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Non-surgery Mild Metopics vs. post-op metopics:<o:p></o:p>
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http://www.craniokids.org/support/showthread.php?t=6098<o:p></o:p>
From Susan (mckennasmum): “He basically summed it up that on a scale of 1 - 10 as 10 being the 'perfect head,' which as he said nobody has. So to get McKenna to a 9 on that scale we need to place her somewhere before that. He said her head is about a 7. So we would only be moving her a fraction on that scale but putting her through major surgery and the risks that are involved don't outweigh the results right know. He said a severe metopic would be a 1 or 2, so you'd want to get them as close to 9 as possible. He also said McKenna's head right now could be on par with a child that is say 5 years post op metopic fusion, and lots of kids heads somewhat revert back to pre op shape a bit. So we could go through surgery now and in 5 years her head could look exactly the same.”<o:p></o:p>
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Susan (mckennasmum) (quoting a surgeon): “I love surgery I love operating and I love 'fixing' kids but I don't think the improvement I can make on McKenna is significant enough to warrant surgery, but I think it was more about the fact that he said for moderate to severe metopics McKenna's head shape right now would be a great post op result, and we could operate and in a couple years her head may look the same!”<o:p></o:p>
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http://www.craniokids.org/support/showthread.php?t=5924&page=3<o:p></o:p>
Amy (momoftwo) quote from Dr. Fearon: “We have a study performed at our center that is currently in press now, which examined how children grow after getting a single sutural synostosis corrected. We found that children do not grow completely normally afterwards. I suspect that growth is worse in the kids that are more severe to begin with, but we were unable to prove this in our study.”<o:p></o:p>
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Susan (mckennasmum): “funny this comes up because its exactly what we were told yesterday about McKenna, that her head would be a great post op shape for many kids!! And I guess Dr Fearon is saying a similiar thing and Wyatt's and <st1:city w:st="on"><st1:place w:st="on">Camden</st1:place></st1:city>'s head prove it!”<o:p></o:p>
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This whole thing about moderate and severe post-ops looking mild Metopic down the line was very enlightening to me. I automatically thought without question that CVR for Metopic would remove the Metopic shape, not result in a mild Metopic in some cases. In other words, my presumption made me think something was wrong, when actually he could be within a range of normal for him.<o:p></o:p>
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Based on all this, I think what I am seeing just might be our normal. It is a far cry from what I was expecting, and I guess that’s why I’m writing this. Because I wish my expectations were a little bit more in line with reality. If he truly is fine, then I have beaten the crap out of myself with worry for no reason. I must add though, we absolutely do not regret the surgery. <o:p></o:p>
<o:p> </o:p>
<link rel="File-List" href="file:///C:%5CDOCUME%7E1%5CCathy%5CLOCALS%7E1%5CTemp%5Cmsoh tml1%5C01%5Cclip_filelist.xml"><style>  </style> Part of me thinks that I was so scared for so long (pre-op) that I just don't know how to NOT be scared anymore. Like it's not safe to believe everything will be ok - babies are not supposed to need to have their skulls reshaped - and yet they do! How do we cope with that? Of course it's hard to get past, and we all are amazing for getting to where we are.

So here we are at 9 months post op. We’ve just come away from a follow up appointment where we met with our surgical team. The neurosurgeon advised that the “triangle look” is deceiving because when any child cries, all the soft tissue is pushed forward which creates a misleading appearance (all of my “worst” pictures of David are from when he is crying). He says a measure of success is how the head circumference increases – as it would not have increased proportionately without the surgery.<o:p></o:p>
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Our CFS was in emergency surgery, so we had the chief of the department for our follow-up instead. He is so pleased with David’s look, he went so far as to say that he could pull other staff members from the hallway and bet that they would not be able to tell which suture was even repaired! He did acknowledge my concerns and he explained it all very well. He agreed that there is some flatness on the sides, but does not feel it is outside of the range of normal. He studied my head and my husbands head and then told us that it appears to him as though our CFS built David’s head to resemble my husband’s shape after the healing is complete. I asked how to tell if there is ever regression, they replied that you tell by how the head growth is coming along, and by looking at the orbital rims. His growth is appropriate, and the rims show no sign of regression, and he does still have a forehead. He informed me that the ridge is just where his new skull plates are meeting and healing, and it will blend in with time. His bones are still very thin, and bones grow outward – so his shape will continue to smooth out as healing continues. I now feel like I have proper expectations. Hopefully this can help some other pre-op and post-op parents out there, but please keep in mind this is just a pile of my opinions, it is certainly not a substitute for your trusted doctor’s input.<o:p></o:p>

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<o:p></o:p><center>[I]David (9 months post-op):
http://i212.photobucket.com/albums/cc102/xl1200cate72/2008-0825-001.jpg</center>

I expect and hope that I will finish this story a few years from now and write, “well I guess there was nothing to worry about after all, it was all normal, my son looks great”.<o:p></o:p>
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Update February 6, 2009: David is 14 months post-op and doing great ! The big lumps on his temples from the plates are long gone. His post-op ridge along where his suture used to be fused is finally going down some, but still has a ways to go. The narrow plates running from front to back (like the bows on glasses, except there are 2 per side), can still be easily felt, but I can't feel the screws on them anymore. His scar is still fairly visible, but I blame genetics - he comes from a long line of bald folks. The top view is not drastically angled as it was at 7 months. I would have to take a picture in the bath to show it better. Overall, I'm pretty psyched about how he's coming along.

<center>[I]David (14 months post-op):
http://i212.photobucket.com/albums/cc102/xl1200cate72/14mos.jpg
</center>
To be continued...

UPDATE:
It's 12/03/2010, we're 3 years post-op! Woo-hoo!!!

Well things are not as I expected, but I guess in life most things never are. What matters is that we are content. His cranio team is also very happy with his progress. They are a bit baffled that he still has his plates, and he has re-grown a wide metopic ridge. But the bottom line is that they are happy with his shape, that his brain has plenty of room, and his development has been awesome.

The only other issue is that his scar has become quite wide, to the point where several times a year it rips and scabs up. Our team is recommending that when he gets a bit older, we consider a short surgery to close up his scar. At that time we may also consider burring down his plates and ridge if it seems necessary. I'm at peace with it at this point because after all we've been through, this should be a breeze.

Some photos:

Here is his scar:
http://i212.photobucket.com/albums/cc102/xl1200cate72/scar.jpg

Here is a view looking directly down over his head:
http://i212.photobucket.com/albums/cc102/xl1200cate72/waytop.jpg

Here is a diagonal view down, you can see his plates still sticking out like extra sets of eyebrows, especially on the left. Some screws are still visible as well.
http://i212.photobucket.com/albums/cc102/xl1200cate72/diagplates.jpg

Here is a front view where the light is hitting his ridge:
http://i212.photobucket.com/albums/cc102/xl1200cate72/ridge-1.jpg

Here's a photo I took of him when I wasn't looking for cranio features:
http://i212.photobucket.com/albums/cc102/xl1200cate72/front.jpg

Thanks for all the help & support everyone.

Wyatt's Mom

09-15-2008, 08:55 PM

Cathy: That is amazing, and for me VERY HELPFUL! I have had so many worries over Wyatt's head lately. We go back again on the 18th for another checkup. I feel the same as you, my expectations were so high and I'm slightly dissapointed. I don't regret the surgery either, I just wish I was more prepared for the post op worries.

Thank you so much for posting this.

mckennasmum

09-15-2008, 08:59 PM

Great post Cathy, its so helpful for those who've been through surgery and those of us on the wait and see! Well done!

dannlark

09-15-2008, 09:16 PM

Wow!!! Cathy, that was an AWESOME post!!!! Thanks for putting all your thoughts down here for us. David looks FANTASTIC!!! You team did a great job... I keep telling myself that it's a total work in progress and not to sweat the small stuff until 1 year. It's amazing how David's head has morphed pre surgery, after surgery and now at 9 months post op. And I'm sure as the skull continues to grow into adult hood it will keep morphing and improving. As parents, we're kinda stuck between a rock and a hard place because if we leave it alone it gets worse, and if we opt for surgery, it's a gamble of how close to normal they can get it and then have it maintain.

I'm sure your post will help a lot of parents having the same post op concerns or at least prepare those who are awaiting surgery. We all want the kids to come out looking PERFECT, but we need to remind ourselves that nobody is perfect. It's an improvement for the head, and the brain, and that's what counts...

Janet

09-15-2008, 09:18 PM

THANK YOU, THANK YOU, THANK YOU!!!!!!! I have tears in my eyes. Ever since Fiona's had the surgery I've been on the quest for the perfect skull. She is not perfect, people may not notice, but I do, I'm also at the point where I'm accepting it and trying to give it the proper time it needs to heal. Thanks so much Cathy, your post will help a lot of people.

momoftwo

09-15-2008, 09:38 PM

Great post Cathy!! And by the way..I think David looks wonderful!!!

Holly

09-15-2008, 10:08 PM

That was an excellent post. And david looks great:). Notice how most everyones kids on here are babies? I think as the cranio kids out there get older their heads must even out and the parents aren't worrying. Because there aren't very many parents of older kids here.

EmmaLacey

09-15-2008, 10:21 PM

Cathy! That was fantastic. You are a great writer! I realize when I look at the picture of David, 9 mths post-op, that I haven't seen any pictures of him lately. He looks wonderful and is getting big. I am sorry you have been so worried that last few months. I'm sure your story will help so many. I consider myself one of the lucky ones. I haven't had any concerns with Emma since surgery.

Amy K

09-15-2008, 10:53 PM

Beautiful and brilliant. THANKS FOR POSTING!!

jumpingjacksmom

09-15-2008, 11:06 PM

thank you for your honesty and openness... what a beautiful boy you have!

Jennifer

09-15-2008, 11:25 PM

Beautifully put. Thank you.

Mindy

09-16-2008, 12:56 AM

That was an amazing post! Thank you for sharing that with us. I also think David looks awesome!!! I love the latest pic of him!!

Wyatt's Mom

09-16-2008, 02:24 AM

I also wanted to add, he sucks his thumb just like Wyatt with the index finger up a bit. So cute!!! :o)

mimi

09-16-2008, 06:13 AM

I agree, a beautifully written post. David looks wonderful. Thank you for sharing such deep and personal emotions about your continued journey. It will definitely help me on my own journey.

Tawnia

09-16-2008, 11:20 PM

I am sure that post will help MANY mommies! Thank you!

Janet

09-17-2008, 01:36 PM

BTW David looks great!!

xl1200c

09-17-2008, 01:46 PM

Thanks everyone - I appreciate the feedback. Like we've all said at one point or another: "what a roller coaster ride !"

Monica

09-17-2008, 01:47 PM

That was a fantastic post. I'm not overly worried just yet. But every little "nuance" to Florence's skull makes me wonder if everything is going ok, would it have been ok if we had left it alone, etc. Knowing that no one has a perfectly shaped skull is small consolation when you've done SO MUCH in order to acheive one. If God gives you a slightly asymmetric head, that's one thing, but when you've been to H--L and back to fix it an imperfection, it's frustrating to find the imbalances, even if they aren't visible to anyone but your own critical eye. As always, it's comforting to know that I'm not the only one worried. Thanks for sharing your feelings!!!!

P.S. David looks fantastic!

amizzle

09-17-2008, 02:37 PM

Thanks so much for that post Cathy.

It is so nice to know that we all have had, and still do have the same concerns with our children's heads post op. I know that I look at carson's head daily making sure it is "okay." I even get parionid about my non cranio daughters head.

I think it all comes from fear. Fear that we put our child through a surgery with only minimal results, and fear that we will have to go through another surgery.

Thanks again Cathy. David looks great! So cute in that last pic....

melsch

09-17-2008, 03:58 PM

GREAT post! I certainly live this every day! I was wondering just the other day if I'll still be so 'critical' when he is in his 30s or if I'll finally find enough peace to 'let it go'. Thanks for helping me realize I am not alone!

tracy_girl05

09-17-2008, 05:22 PM

THank you for writing this all out-- by the way he looks amazing, he has changes so much!!!!!!!! Adorable!

Josephsmommy

09-17-2008, 07:34 PM

Thanks for those words! I need some re-assuring. Even though my son had a different procedure; I'm not to sure he looks the way I expected him to but the doctors tell me the same thing: To give it some time!

Thanks again and your handsome boy looks gorgeous!

Maddy's Mom

09-18-2008, 02:53 AM

Wow! I hadn't even gotten this far yet in the "worrying process". Thanks for the heads up! Since you pointed it out, Maddy's first surgery flattened her forehead only briefly because the sutures fused again anyway. I didn't question it because we knew all along that it was only a temporary fix and she would have surgery again to correct it. It didn't occur to me that the ridge could come back after her most recent surgery. We are still watching the swelling go down.

I'm really glad you shared your experiences on this topic. Thank you!

Abby'sMom

09-29-2008, 11:31 PM

:hugg

three.little.boys

09-30-2008, 12:13 AM

Cathy-
I have NO idea how I missed this!!! You did a wonderful job...good for you! I think you summed up what a lot of us post-op parents feel. I used to think that cranio was 'behind us"...now I know it is a lifelong worry...all the way till Quintin is an old man and loses his hair to reveal a scar, and possibly a funny shaped head!!

GREAT POST!

donnamilliezac

11-14-2008, 07:09 AM

I thinks your post is brilliant, my son is yet to be diagnosed but we think he has severe metopic and i think my partner is now getting afraid about surgery he doesn't want to go ahead with it unless its absolutey necessary - its good to get a realistic view of the outcome of surgery. I don't know much yet about the condition other than what i've researched myself but I know as scary as it seems i'd go for surgery.

babu

11-17-2008, 11:41 PM

GREAT ...GREAT...GREAT help /information

-Babu

Sequoia

11-19-2008, 02:35 PM

Thank you, so much for this post. I have been worried, because my daughter will be almost 3 when she has her operation. It is great to hear your insight, and to realize that there is no perfect head. Thank you!

xl1200c

02-06-2009, 08:08 PM

Hi everyone,

Thanks for the great feedback! I updated today of what's been going on since I wrote it and added a current picture.

Abby'sMom

02-06-2009, 08:29 PM

Update February 6, 2009: David is 14 months post-op and doing great ! The big lumps on his temples from the plates are long gone. His post-op ridge along where his suture used to be fused is finally going down some, but still has a ways to go. The narrow plates running from front to back (like the bows on glasses, except there are 2 per side), can still be easily felt, but I can't feel the screws on them anymore. His scar is still fairly visible, but I blame genetics - he comes from a long line of bald folks. The top view is not drastically angled as it was at 7 months. I would have to take a picture in the bath to show it better. Overall, I'm pretty psyched about how he's coming along.

<CENTER>David (14 months post-op):
http://i212.photobucket.com/albums/cc102/xl1200cate72/14mos.jpg
</CENTER>
To be continued...
[/quote]

Good to hear David is coming along so well...Wow he has grown!
He looks great!
:woohoo

xl1200c

12-03-2010, 08:50 PM

Updated to add 3 year post up news and several more photos...

melsch

12-03-2010, 10:58 PM

Hi Cathy! It's good to 'see' you! He looks great!!! congrats! Hope all is well!