Type of Surgery?!?!?!

[Kaitlynn's Mommy]

Another question. What type of surgery would you recomend, based on your experience???

We were told that the Strip surgery with the corrective helmets failed more than it suceeded, by our Neurosurgen. And that the helmets wern't covered by insurance?!?!?!

Someone please help me! We decided on the big surgery, but now I feel horible about it! I don't want my little girl to have a big scar on her head! My sister has a scar on her neck and people always stare! I know her hair will cover it but I'm still worried about it! :(

I got a moving email from a lady in our area who's son is 8 now and the strip surgery worked for them and it was just enough to push me! :( I dont' know!!! I'm so emotal and want to do all the research on the strip now! Thanks in advance ladies!

[sarahob]

Hi Amanda. I'm sorry but I can't help you out here. We did not have the option. Gavin had a total CVR and we are happy with the result. He will wear a helmet for a couple months to further shape his head but the CVR really gave him a nice shape.

[charliesmummy]

Hi Amanda, i cant offer advice on strip as Charlie had CVR/FOA & he has fantastic immediate results x

[jenniferann75]

Amanda, Andrew had the strip craniectomy with a classic incision and no helmet therapy. Our NS felt that endoscopic was not the way to go. She felt that the risk of a tear in the dura and not being able to have full visibility to repair it outweighed the benefits of the endoscopic procedure.

If you feel you really need to think about a different procedure, talk to your surgeon. Ask about the pros and cons and what it all means for your daughter in specific. I really hope that you get the answers you need to feel at peace with your decision.

[craniomommynbaby]

If the scar is your main concern, then maybe I can offer some reassurance. I had surgery when I was 2 months old, and now my hair covers my scar. Only hairdressers notice it. If the scar heals too thickly for whatever reason, the plastic surgeon can go back and make it thinner. Feel free to PM me if you want to see current pics of my head.

[melsch]

We too had the option of the strip surgery or the 'big' surgery, we chose the big. Our doctor did not express a lot of confidence in the endoscopic procedure and because the scar would be in the hair line we weren't concerened for his overall appearance. Good luck with your decision, I know how difficult this is, hang in there!

[Maji312]

hi
God I was in the same boat as you, and I remeber feeling that I did not want my beautiful son to have that scar as well. I went and saw 4 neurosurgons in Ny and Nj. Each surgeon had their own opinion about what type of surgery they would do. I really feel as a parent you cannot just get one opinion and go with that Dr., This is your child and you need the best for them. I went with the endoscopic surgery and my son has to wear a helmet. He has 2 small incisions and they have healed beautifully! His head is round and he looks great, he had the surgery a month and a half ago and I would have never put him through the big surgery for saggital. The results are great and you have to keep in mind some surgeons are fixed in their ways and then their are others who do all types of proceduares, you have to feel comfortable with the Dr. If you would like to talk more PM me and good luck...I know it is one of the hardest decisions you have to make for your lovely baby!

[Kaitlynn's Mommy]

Thank you so much! I just haven't felt right about the big surgery from day one. Even when we went to go see the neurosurgen. He said that the helmets aren't covered by the insurance, and I remember thinking, I DON'T CARE!!! But I'm having a hard time now with my husband. He seems to not have interest at all. Even though I've printed off research, highlighted the points, and sat it in front of him. ERGH!:mad: :pullhair It just makes me want to bawl my eyes out, I've about had it!:cry

Any who, I'm going to keep doing my research. Thank you all so much for your input, and experiences!!!! And thank you also for suggesting seeing other surgens!!!



hi
God I was in the same boat as you, and I remeber feeling that I did not want my beautiful son to have that scar as well. I went and saw 4 neurosurgons in Ny and Nj. Each surgeon had their own opinion about what type of surgery they would do. I really feel as a parent you cannot just get one opinion and go with that Dr., This is your child and you need the best for them. I went with the endoscopic surgery and my son has to wear a helmet. He has 2 small incisions and they have healed beautifully! His head is round and he looks great, he had the surgery a month and a half ago and I would have never put him through the big surgery for saggital. The results are great and you have to keep in mind some surgeons are fixed in their ways and then their are others who do all types of proceduares, you have to feel comfortable with the Dr. If you would like to talk more PM me and good luck...I know it is one of the hardest decisions you have to make for your lovely baby!

[jenniferh]

Amanda, I think we've all been where you're at. We, also visited with a few surgeons and each had their own procedure that they felt was best. We decided against the strip and went with the CVR. There are parents on here that have experienced all of the different procedures and they have all seemed to work out just fine. You are on the right track with doing all the research and doing what your "gut" tells you. I also had to deal with the same thing with my husband. Don't worry it will all work out in the end and he will be thanking you for all the research and time you are spending to educate yourself and do what's best for your daughter :). Thinking of you and sending prayers!

[my_angel_kenley_grace]

I think we all know what you are going through. My best advice is to learn everything you possibly can about each procedure as well as each surgeon that you visit. Definately get more than 1 opinion! Each NS has their own preference but you need to do what's best for your son.
Kenley had the strip surgery and we couldn't be happier with the results. She had surgery on June 13th and her scar is hardly visible now. You have to move her hair and really look for it to see it. We also did not have to use the helmet. But each case is different.
My thoughts are with you. I'm sure you will make the right decision.

[Kaitlynn's Mommy]

Thank you all ladies. I found a wondeful doc in San Antonio, TX. Doc. Jeminez. He is the one who pioneered the Endoscopic surgery. I love his results, and I knew there was another option for us. It will be about a 15 hour drive, but I feel it will be worth it. We haven't totally made up our decision, but I have sent them photos of Kaitlynn to look over!

For any moms who are interested. I have the information on Sagittal babies he's done. The results are fantastic. Email me and I can send you the info!

Thanks again ladies for your input! I feel so good about our decisions. The risks of the Endoscopic surgery are so much smaller than the risks of the bigger CVR!

[craniomommynbaby]

Have you also researched the spring-mediated surgery? A Dr. Lisa David at Wake Forest specializes in that one. The parents who have had that one done have been immensely pleased. Their babies go home the next day, and no helmet is required.

[melsch]

That's great news! Good for you! I hope this doctor is able to answer all of your questions! Good luck, let us know how it goes!

[jenniferh]

Amanda, I am so happy that you found a surgeon and something you feel comfortable with. That is such great news. We also had to travel out of state for Addison's surgery. I remember weighing the pros and cons and am so gratefull that we chose to go with what we felt most comfortable with even though we had to travel a bit to get there. We will be sending lots of prayers and thoughts your way. :)