Mallory's 2nd Surgery (Sagittal)

[Mallory's Mom]

Wow...time flies by!!! It's been a while since I last logged on to Craniokids...just busy with life (and kids!) I felt the need to return and read some of the stories posted from other families. Last week my husband I received the news that we have been hoping we would never hear (although, I think my Mother's Intuition always knew would.) It had been over a year since Mallory had her surgery (7/19/07) and we were visiting her NS for a check up...He measured her head and plotted it on the chart. He didn't even need to tell me...I saw the result and I just knew!

The first 3 months after surgery, her head looked great. As time passed, I was concerned with the fact that her temples never seemed to open up...I would always ask her Doctors and they would always respond with "Give it time". Well...time has passed and know her Doctors seem to think she should have another surgery within the next 6 weeks! Her head has become elongated again, and seems to have refused from the front going back.

I'm so incredibly disappointed and scared. Prior to her first surgery, everything we read gave positive results with one surgery. Our doctors had said there would be a 70% chance that she would not need another surgery...well, I guess our little girl is already an overachiever! Mallory had a strip craniectomy, with the barrel cuts down the side of her scull. Her doctors felt this was the best surgery choice for her, because her other sutures looked great. This was also less invasive then the option other doctors that we had met with had wanted to do.

Another thing that I question is why Mallory's doctors did not want to use a helmet. Once again, I would ask at every visit with her PS about a helmet and He always said it wasn't necessary. Her NS assures me that it would not have helped...if the suture was going to close, a helmet would not have stopped it. If this being the case...what is the purpose of the helmet??

Mallory visits her PS next Monday and I was wonder if anyone has any suggestions on questions we should ask. We trust our doctors, but we are also thinking of seeking a second opion. We aren't looking for someone to tell us that she doesn't need surgery (the measurements speak for themselves)...we're just wondering about how the surgery should be done.

If anyone has any suggestions or feedback...I would love to hear from you. Honestly, we are just very confused and overwhelmed again.

Leah
(Mallory's Mom)
Mom to Marina (6), Owen (3) & Mallory (1 1/2)

[amizzle]

Sorry to hear you are having another surgery! Are they going to do a strip craniectomy again or a CVR?

Our son had the strip craniectomy in december of 07. He is almost done with therapy and has the cutest, roundest head.

We were told a helmet is very necessary after a strip craniectomy to prevent the head from growing back long. Our surgeon explained that the DNA of the bone will want to make the head grow back exactly how it was before, so the helmet prevents that from happening. Not sure if that would of helped with the narrowness at the temples though....

maybe ask for another opinion just to make sure you are on the right track, 2 opinions are better then 1. Best of Luck!

[dannlark]

Wow! I'm so sorry that you are facing another surgery. I too always thought that the strip surgery required helmet therapy afterword. Grrrrr...... Are they planning on doing the full CVR now? It must be such a huge dissapointment that you aren't out of the woods yet. I can't imaging having to go through ANOTHER surgery...yikes!! Make sure you come armed with a ton of questions, and that they ALL get answered!! I say it's time to switch into high gear and make sure this would be the LAST surgery that will need to be done. It's not a guaranteed done deal, but MAN, no parent wants to hear that it's got to happen a second time... Keep us posted, and our thought and prayers are with you at this, yet AGAIN, scary time... Stay stong Mommy!!!!

[Gavinsmomann]

I Am So Sorry To Hear That She Will Have To Have Another Surgery. Could You Feel A Ridge On Her Or Anything? Gavin Had The Very Same Proceeder With No Helmet So Hearing You Scares Me. I Will Keep You And Mallory In My Prayers.

[Wyatt's Mom]

Oh no! Another surgery! That is horrible news. Mothers intuition wins again though eh?
I think you should seek another opinion. Like you said, you are not looking for someone to say she doesn't need surgery, just want an opinion on what type of surgery to make sure this will be the last one.
Best of luck.

[Tawnia]

I would seek a 2nd opinon. Sorry you're having to do this again!

[Mallory's Mom]

Thank you for the suggestions and feedback. It's interesting to see how Doctors have such a difference in opinion when it comes to the helmet therapy. It really makes me wonder what we should have done differently (maybe pressed the issue more with her PS).

We always knew there was a "chance" for an additional surgery...but the chance just always seemed so small. All of the stories we would hear or read about were successful with one surgery (why would ours be any different?) The doctors that perfomed Mallory's surgery are very well known in our area (especially her PS) for their expertise. I'm under the impression that they would be perfoming another strip procedure on her, but we will know for sure once we see the PS next week. This is why we are trying to get another opinion on how the surgery should be done...to achieve the best results for her.

Thanks for your thoughts & prayers.
Leah
(Mallory's Mom)

[jumpingjacksmom]

wow... so sorry about this!

am i wrong that the kidos have to be young enough for the strip craniectomy? i thought it was under 4 months... my jack had the endoscopic strip craniectiomy a little over a month ago for sagittal cranio and is now in his helmet. i also thought that all strip procedues requied a helmet, but maybe not?? it's not to keep the sutures from reclosing, but for the shaping of the head as it grows since there is such a large opening now and it wants to follow the path of least resistnace. someone had posted a link to some really good vidoes that show how it works not too long ago. i'll try to find that for you... it really helped it all make sense to me.

i can't imagine having to go through all this again... i'll be praying for you guys.

[jumpingjacksmom]

here's the VIDEO (http://www.craniosynostosis.net/video/default.asp?flashFile=Sagittal_Growth_Superior#vid ) that I was talking about

[Janet]

I'm sorry that you might be facing another surgery.

[Annie]

sorry to hear that you have to go the surgery road again..but i agree, maybe it's a good idea to get a second opinion..our Doctors are great, but for our peace of mind it doesn't hurt to get another opinion....

[Holly]

Sorry to hear you may be looking at another surgery. I'd love to see pics of mallory:).

[Mallory's Mom]

Thank you for the video Kerre...it was very helpful. It was interesting to see how the helmet does help to mold the child's little head! I did notice from some of the reply's that all the children who had endoscopic strips had the helmet...my daughter's procedure was done endoscopicly. Does anyone know if this makes a difference with the use of the helmet? Thanks! Leah

[Mallory's Mom]

I wanted to include a recent photo of Mallory...This picture was taken last week (14 months post surgery.) She loved her TuTu!!!584

[Tawnia]

She looks adorable~ I will say I have never heard of them doing endoscopic without a helmet. CVRs reconstruct the skull so they don't need it but with the strip endo. it just removes the bone where the suture is so there is really no way the skull is going to suddenly decide to grow round...that is why they use the helmet to mold it to the correct shape as it grows. At least that is my understanding.

[amizzle]

Mallory is a cutie! Love the tutu I always put one on my daughter to play in, can't resist :)

Just wanted to add what kerrie did earlier.... I am pretty sure they won't do a strip surgery after like 6 months (i know there are exceptions, we did have a 10 month old at one of our appointments getting surgery).

From what I understand around 18 months bone re-growth slows down and thats why they don't usually do strip surgeries later on.

Maybe just ask your surgeon so you know what to expect during surgery and recovery this time around.

[Mallory's Mom]

Thanks for the additional feedback regarding the helmet. Mallory's strip wasn't endoscopic (which is why I assume she didn't use a helmet), but I can't help but think it would have been beneficial.

Mallory's NS believes she needs the next surgery asap...due to her age. She is almost 21 months and He would like this next year of growth to not have to be corrected later. We see her PS on Monday and will have more specifics then...plus another CT scan (I assume!) Our NS was talking about doing the surgery the same way (Strip), which is why I'm thinking of seeking another opinion. If it closed so soon after the first surgery...what will stop it from doing the same for the second surgery?

[jumpingjacksmom]

just keep going til you get all your answers! sound like your doing pretty good so far. i would think that the ps wold be able to give some good insight about the type of surgery that's needed too.

mostly i just have to say....HOW STINKIN' CUTE IS SHE!

blessings and keep us posted!

[Mallory's Mom]

Yesterday we made arrangements to have an upcoming "round table" discussion with Mallory's PS & NS. This meeting is to review her surgery files and photos (Pre-surgery & Post) in hopes of determining our next course of action.

While reading everyone's stories, I have found very few children who have had to undergo multiple surgeries for the sagittal suture. I was just wondering how common this is and if there is anyone out there who's child has had to undergo additional surgeries for the sagittal suture???

I want to go into this meeting knowing as much as I can, because I'm very scared that they will want to do the same surgery (strip) and it that it will yield the same results.

Thanks...
Leah
Mom to Marina (6), Owen (3) & Mallory (1 1/2) Sagittal Suture

[brandonsmom]

Hi my son also had a strip craniectomy at the age of 2 months. He did not have to wear a helmet, we just had to kind of mold his head ourselves with postioning and so forth but reading your post scares me because we have taken him back to his NS several time beacause he has had a ridge on the top of his head like the first one for a long time as well as one down the center of the forehead. His NS repeatedly tells us that he is perfect and even did a CT. He told us that as his head grows it would become less noticeable and as for the ridge along the forhead nothing was done to his forehead during surgery and if he had metopic by now his eyes would be very close together which his are not. He also said that the CT scans are normal. but I have this nagging feeling that his head should be flat on top...right? and that he shouldn't have the small rifge down the forehead...I don't know maybe just paranoid. I trust his NS, He is the best in the state, but should I get a second opinion? Sorry this was so long, once I got started I couldn't stop...lol

[Max's Mom]

What a bummer! So sorry to hear you have to face that again. I'd get a second opinion. Even if you hear the same thing you will feel better about having covered all your bases first. BTW, love the leopard print hat! What a doll!!!

[Nezzy]

I am so sorry to hear you need another surgery. I really think you need to seek additional opinions. Especially if they are considering another strip. At this point, and I am no doctor, but I believe a CVR would be much more successful. Typically strip craniectomies are not done much after 12 weeks of age. Where was your first surgery at?

[Nezzy]

Thanks for the additional feedback regarding the helmet. Mallory's strip wasn't endoscopic (which is why I assume she didn't use a helmet), but I can't help but think it would have been beneficial.

Mallory's NS believes she needs the next surgery asap...due to her age. She is almost 21 months and He would like this next year of growth to not have to be corrected later. We see her PS on Monday and will have more specifics then...plus another CT scan (I assume!) Our NS was talking about doing the surgery the same way (Strip), which is why I'm thinking of seeking another opinion. If it closed so soon after the first surgery...what will stop it from doing the same for the second surgery?

The goal is to create a round skull...a strip craniectomy will not achieve this.

[Kate Carey-Trull]

Not sure how I missed this back in Sept., just seeing it now, but I would say get another opinion too -- why do the same thing if it didn't work the first time?? And I agree that I thought that specific procedure was for younger kids.
We did hear there was a percentage that needed a second surgery, but I don't kow off the top of my head. Our son had a modified pi procedure, which is the pi shape from math, so not only are two strips taken out lengthwise, a large strip is taken out widthwise and his skull was then pushed together, so it was immediately not as long. Also had barrell cuts to "pop" out the sides. Just thought I'd throw out another procedure, I'm not sure how it is exactly different from a CVR tho -- maybe a CVR mom could explain that :)
Best of luck and keep us posted!!

[AddiesGramma]

CVR is where they actually take the bones out, reshape them and then put them back in. Which is what Addison had both times this year. In March they did the back of her head and Oct they did the front.