Sagittal Craniosynostosis

[jsc]

My son Joseph (one month old) was diagnosed today w/ Sagittal Craniosynostosis by Dr. Fearon in Dallas. He determined that he will need surgery when he is about 5 months old. I have been doing research online and came across this website. Joseph is our first son, so not only are we new at parenting but we also don't know much about craniosynostosis. Do any of you know of Dr. Fearon? He seemed like an excellent doctor, but I would like to hear it from patients. Did any of you experience any of the risks/side effects of surgery? How did the surgery affected your baby? Do you guys know about how much this surgery costs? Thanks for your help! We are sooo overwhelmed right now that any info would be greatly appreciated.
JSC

[audra15]

So sorry that you are going through this but this site will give you LOTS of support. Dr. Fearon's people will be here soon. . . they all ♥♥♥LOVE♥♥♥ him. He seems to be one of the top doctors to handle this.
Our daughter had surgery for sagittal at 4 1/2 months but in Philadelphia. I'm not going to lie - it was scary and hard on the parents but she did amazingly well. She was laughing and smiling in ICU on the day after her surgery. Within a couple of weeks she was completely back to her "old self." I don't know about costs since our insurance covered ours but hopefully you will be covered.
Hang in there!

[jsc]

Thank you so much! Yeah hopefully my insurance will cover it...so, everything is back to normal now with your little girl? That is great to hear!

[Sophia's_mom]

Welcome to CK I'm glad you found us! All the parents here who used Dr. Fearon seem to love him. I do not have personal experiance with him, but from what I've heard he seems like a great person and surgeon. My daughter also had Sagittal Cranio and had surgery at 3 1/2 months. She is 13 months now and doing great. It is a scary time, but the kids bounce back so quickly it really is amazing. Take some time to read stories here and look at some pictures so you'll know what to expect. Ask lots of questions, we'll be here to support you any way we can.

[jsc]

Thank you so much for your support!

[fitmomof2ae]

Welcome to CK! I'm sorry to hear about the diagnosis. My son was diagnosed with Sagittal cranio at 9 months and had surgery the day before he turned 11 months. He did great during surgery and was playing in the hospital playroom within a day or so. He was released after 2 1/2 days. Of course, each case is different.

As the others stated, many of the parents on this site used Dr F. Just use the search option above and type in his name to find additional information and posts. I think I've read some posts on his costs as well. Good luck!

[Nezzy]

My son had surgery with Dr. Fearon back in September and did great! I love Dr. Fearon and can highly recommend him. I'd be happy to answer any specific questions you have...feel free to PM me. Regarding his cost...Dr. Fearon's fees for a posterior CVR run about $11,000 (that's what my son's surgery cost anyway). But the hospital fees are what are so expensive. I think for just the hospital stay it was around $50,000 and then you have another $14,000 for the neurosurgeon and $3,600 for anethesiologist. It really adds up. Luckily for me I won my insurance appeal and got it all covered. Are you in Texas?

[Max's Mom]

Hi there. Glad you found this site. It is amazing. My son is also a sagittal baby and we are traveling from Los Angeles to Dallas next week so Dr. Fearon can do the surgery. After all of the other surgeons we interviewed, I was the most comfortable taking our son to him. Good for you that you are local and don't have to worry about the travel! I would look around his website if you haven't already. There is a lot of great info on there about craniosynostosis in general, and there are a links to a lot of the research he has done in the field. http://www.thecraniofacialcenter.org

Sorry you're going through this, and I'll be happy to chime in later after our surgery.

[jsc]

Thank you all! Good luck, I will be praying for Max!

[*jules*]

Hi, I also want to welcome you and say sorry your dealing with this diagnosis. My son was diagnosed at almost 5mos old...couldn't imagine going thru that after only one month of the new baby bliss.

My son was metopic so I don't have any info regarding sagittal synostosis, but we also traveled to Dr. Fearon for his surgery. I only have great things to say about the man :) If you have any specific questions, please feel free to send me a PM (personal msg)...I'm happy to help.

I also want to say that I understand the fear and panic associated with learning you child has this and needs a huge surgery to correct it. I know it doesn't help much at this point, but believe me when I say these kids get thru the surgery with flying colors...it's really amazing. Please know that your son is the hands of one of the best surgeons available and be thankful you didn't have to travel across the country to find him :)

The months of waiting for the day of surgery can be very difficult so please lean on us, read our stories, pick our brains, etc. We're here to help.

[Perla]

Hi and Welcome!
I am also new to CK, and I got great support so far. You are very lucky that Joseph was diagnoses so early. My son was just diagnosed at 4 months. At least you have time to get ready. I wish you all the best.

[MBSzafranski]

I am also new to all of this, but you will be amazed how quickly you absorb it all. I am meeting with Dr. Fearon tomorrow, but wanted to recommend you meeting Dr. Genecov as well. Because your son is so young (and so is mine at 2 1/2 months) you have more options. We were very impressed with Genecov but are going to make our decision after our appointment with Fearon. Genecov's office is next door to Fearons. Wishing you and your baby all the best!

[Peytons_Mommy]

just wanted to welcome you to the site. i too am a sagittal mommy, waiting to see a cfs next month and hopefully set up surgery date. i too say dr f is prob the best out there. he dx peyton over email before we met with a neuro. if i had the finances i would go down to texas for him to do the surgery but that wont happen. glad you found the site it will help you tremendsloy.

[jsc]

Thank you so much Maggie! We didn't really know about this...we will try to get an app with Dr. Genecov. I am curious, did he mention how invasive the endoscopic surgery is? Was that the surgery he recommended for him? how much scarring? chance of needing a second surgery? Let me know who you decide to go with and what kind of surgery.

[dannlark]

Welcome to CK!! I'm another Mom with a metopic child that had surgery with Dr. Fearon. He's amazing and so caring as is all the staff there in Dallas. Dr. Genecov is also really great. He does the endo surgery which Dr. F doesn't do. Kerre, "Jumpingjacksmom" had Dr. Genecov do the endo for her son and has had awesome results. There is a long helmet therapy that is needed after endo, but again with great results. I hope you can fit in a consult with him after you see Dr. F. They are right next door to each other. Hang in there, the news is shocking when you hear all is not well, but like others have said, it's correctable and the kids bounce RIGHT back. Keep us posted!!

[MBSzafranski]

Dr. Genecov recommended a "limited CVR" for my son. He said it is not endoscopic, that he is able to see everything he needs to, but it is much less invasive. He said he will make 2 or 3 smaller incisions, remove a piece of bone from the sagittal area and two small pieces from either side of his forehead by the front (to help with bossing forehead). Scar would be much less than "the big surgery" and recovery time is about 30 hours in the hospital. Ben would then need to wear a helmet for 3-6 months. He said they have had tremendous success with this procedure. Likelihood of blood transfusion approx. 20% and chance of a second surgery roughly 5%. This procedure is only possible before a child is 4 months old, so many people do not even have this option because of late diagnosis. I feel fortunate that we have more options. I think it would definitly be worth your time to meet with Genecov, especially if you live in/near Dallas.
That said, I am not sold on it yet. I have never read a bad word about Dr. Fearon and I am very exited to meet him today. I will keep you posted on our choice. Also, feel free to check out my blog. I have fouund it a great way to keep family informed as well as sort my thoughts. CK is my lifesaver though!
Good luck to you and your son- I know you will make the decision that is best for him and you too.

[beccad]

Hello and welcome to the CK family. You have definitely come to the right place and you are in great hands with Dr. Fearon. My daughter is a coronal baby and had surgery at Vanderbilt Children's in Nashville with Dr. Kelly, who we absolutely love. I would meet with the other doctor and make the best decision you feel is right for your child. The CVR and the Endo are both very different surgeries but both offer great results. That decision is up to you. Most of us didn't have the option of Endo because we were diagnosed too late. You have the option to choose which is great. I hope we are not overwhelming you too much. You will be in my prayers as you make a decision that is best for you and your child. Hang in there mama.

[Avery's Mom]

Welcome and good luck. I see the Fearon Fan Club has already responded to your questions! He is truly a talented Man. As long as he is in network for your insurance you'll be fine...if not get it approved UP FRONT and IN WRITING.

[Mother of boys]

My son had sagittal as well and surgery with Dr. Fearon back in October of 2008. He is doing great and has had no delays or problems. Even though our son did great, he was not one that was happy and smiling after surgery. His hemoglobin levels dropped to the point that Dr. Fearon recommended a transfusion. Dr. Fearon seems to let the levels get pretty low before he recommends that. It isn't low to the point where he would be in danger. Dr. Fearon just likes to avoid unnecessary things. I would highly recommend Dr. Fearon. He is a wonderful surgeon. He has an amazing bedside manner. Our son had surgery on Friday and Dr. Fearon came in on Saturday and Sunday to check on our son. When we did our phone consult with him, he was on vacation with his family. He called us after he put his kids to bed. He really impressed me as well as many other families on here. I don't think I ever came across anything negative about him. If you have any other questions, feel free to PM me. I'd be happy to help in any way.

Take care.
Pam

[jsc]

Thank you all sooo much for your help and support...it's nice to vent and talk to moms who have gone through this. I loved Dr. Fearon and trust him...what I am also concerned with is the scar...is it very noticeable/traumatic for them afterwards?

[Mother of boys]

My son has blond, thin hair and unless you are really looking for it, you can't see it. Since they are so young (well in most cases), they aren't going to remember it. We took lots of pictures and some video, so when he is old enough, we can share that with him. It may seem a little weird to take pictures and video, but this is a major event in their lives and may be interested in knowing about it later. Glad you liked Dr. Fearon. I knew you would.

Take care.
Pam

[Max's Mommy]

Welcome - Dr F is one of the best!

[Avery's Mom]

You should check out the pics of some of the mom's who used Dr F...the scars are pretty much transparent. My son has a zig-zag scar but his hair pretty much covers it up.

[kailan]

Hello there. Welcome. This site is a God-send. The people on here are great. My daughter has Sagittal too. We are still waiting on our appt. at Iowa City. But I've heard nothing but praise from patients of Dr. Fearon. It seems you are in good hands.

[Kate Carey-Trull]

We didn't go to Dr. Fearon, but had an open surgery with a zigzag closure and it is very light. most people don't notice now and my son still doesn't have hair. There are some pics in my avatar, but I will put some more recent ones in b/c those are summer shots. They do recover really quickly. Best of luck with your appts.

[mimi]

Hi and welcome--you have found a wonderful place for information and support. As you can see, Dr. Fearon is well known and well loved!

My son had sagittal and his surgery was at 5 1/2 months old. He did great. We did not go to Dr. Fearon but had wonderful surgeons here in MI. You can see my son's scar if you are looking for it, but it is not a big deal at all.

Best of luck to you!

[Perla]

Hi Maggie,
How did your appt with Dr. Fearon go?

Best,



Dr. Genecov recommended a "limited CVR" for my son. He said it is not endoscopic, that he is able to see everything he needs to, but it is much less invasive. He said he will make 2 or 3 smaller incisions, remove a piece of bone from the sagittal area and two small pieces from either side of his forehead by the front (to help with bossing forehead). Scar would be much less than "the big surgery" and recovery time is about 30 hours in the hospital. Ben would then need to wear a helmet for 3-6 months. He said they have had tremendous success with this procedure. Likelihood of blood transfusion approx. 20% and chance of a second surgery roughly 5%. This procedure is only possible before a child is 4 months old, so many people do not even have this option because of late diagnosis. I feel fortunate that we have more options. I think it would definitly be worth your time to meet with Genecov, especially if you live in/near Dallas.
That said, I am not sold on it yet. I have never read a bad word about Dr. Fearon and I am very exited to meet him today. I will keep you posted on our choice. Also, feel free to check out my blog. I have fouund it a great way to keep family informed as well as sort my thoughts. CK is my lifesaver though!
Good luck to you and your son- I know you will make the decision that is best for him and you too.

[MBSzafranski]

We met with Dr. Fearon yesterday and were very impressed with him too. It is hard to argue with his level of experience- he does 100 CVRs each year, and 50 of those are for Sagittals. He is with out a doubt an expert.

My husband and I are still trying to digest all of the information we took in over the last 2 days. It is a very big decision, and not a fun one at all. I am sure the more we talk about it and the more we think about it we will be able to decide what is best for Ben.

One piece of info I will pass along- Dr. Fearon said if we did end up going the endo route he would recommend going to San Antonio. Check out www.craniosynostosis.net (http://www.craniosynostosis.net) They have much more experience that Genecov (400 surgeries compared to about 20). I think we would probably still use Dr. Genecov if we decide on the endo procedure, but it is something to look in to.

I update my blog regularly with all of my thoughts and info on this topic- www.bensheadblog.blogspot.com (http://www.bensheadblog.blogspot.com) Feel free to check it out!

I am amazed how much Craniosynostosis has taken over my life- I feel like I haven't read anything unrelated in 2 weeks! God bless all of you moms who have been through this and are helping us newbies along! You are lifesavers!

[*jules*]

so glad your appt went well. I'm not positive, but to me, 100 CVR's a year for Dr. F seems very low...anyone else? I thought he did several each week ??? Either way, he's still one of the most experienced IMO :)

You do have lots of thinking and considering to do. Luckily you should have some time to reasearch and get more opinions until you're comfortable. Best of luck with everything.

[jsc]

We are in the same situation Maggie...I made an app w/ Dr. Genecov for Wed, so we will see what he says...as for the San Antonio option, it sounds good we might give it a try. However, I am not sure if our insurance would cover it since we live in Dallas. Thanks!
Vanessa

[MBSzafranski]

I can't wait to hear what you think of Dr. Genecov. We are still totally torn on our decision! Having options is a blessing and a curse at the same time! Best of luck to you!

[tiffanyb]

My friend decided to use Dr. Jimmenez in San Antonio because he is the pioneer of the endoscopic procedure. She was very pleased with him. If we had the option of endo I would use him!

[Mama Musica]

I was really worried about the scar too, but it really wasn't a big deal. WIthin a few weeks, once his hair started growing back, you would have to look for it to see it, and now that he has lots of hair, everything is really hidden nicely. If you check out my blog, you can see some post op pics. The scar fades really nicely.

[jsc]

Ugghh.. apparently they changed my app for tomorrow I was wanting to see Dr. Genecov, but they booked me with Dr. Barcelo (I guess they work together)...does anybody know anything about him??
Thanks!

[Nezzy]

Thank you all sooo much for your help and support...it's nice to vent and talk to moms who have gone through this. I loved Dr. Fearon and trust him...what I am also concerned with is the scar...is it very noticeable/traumatic for them afterwards?

Their hair covers the scar!!!! I honestly can not see Nicholas's scar.

[*jules*]

[quote=jsc;185547...what I am also concerned with is the scar...is it very noticeable/traumatic for them afterwards?[/quote]

don't let this one concern alone make your decision. even with the cvr, the scar is barely noticeable. I litterally can not always find my son's scar when I'm looking for it and he's only 9mos post-op.

also forgot to mention, I think someone here did use dr. barcelo. Hayden's mom Tina ?? I'm just going with the first name that wants to roll off my tongue so I could be wrong. Anyone else ???

[jsc]

No the scar is not the only factor that would make me decide...I was just curious if it is very obvious...but I have seen pictures and the scars are not bad at all, so I am not worried about that at all anymore...and actually Dr. Barcelo suggested that he would do the CVR as well, so I think in that case we would just go with Dr. Fearon since he has more experience doing that type of surgery...we might still meet w/ Dr. Genecov just to see if he would suggest doing the limited. Thanks everyone for your input and support!

[momof2withcranio]

Hi and welcome to this crazy ride. I am the mom of 2 saggital boys. You cant see the scar on my older son. but my younger son you can ONLY because he likes to shave his head. other than that no worry. I did not use dr. feron but have hear wonderful things about him (I live in central florida and found a wonderful dr here). So sorry that you have to go through this but this is an amazing site. Many hugs and lots of prayers..