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craniomommynbaby
03-06-2007, 02:15 PM
Simon had another follow-up with his surgeons yesterday. He still has 2 soft spots, one by each temple. He also has a scalp cyst above his right ear.
At this point, the soft spots are not going to close. They are smaller than a quarter, and the ns indicated that they are not a cause for too much concern. Cosmetically, he is fine.
I asked about safety. There is a minimal risk that something could hit him just right, but the ns brought up that he has not experienced such an injury with a patient. Contact sports such as football or boxing would be off limits. (I plan to steer him away from that sort of thing anyhow.) Ultimately, it is up to us whether we want to have surgery to fill them in. The incision would be in about the same place as the old one. They would take bone chips off his skull and then use absorbable plates to hold the chips in place until they grow together. While in, they would also remove the scalp cyst. He would go home the next day. Keeping him home and out of trouble for a few weeks would be the biggest challenge. We are exhausted chasing him now; can we do it while he has staples in his head?
When I type this, it seems like such a minor thing. Yet, I feel so overwhelmed. This is upsetting me more than his original surgery in some ways. The first surgery was a given; this surgery is not. Yet, we have to live with whatever our decision brings. Considering that our son is such a daredevil and falls on his head for fun, I am terrified to think that we might become that rare statistic if we leave the defects alone. Yet, the thought of surgery terrifies me too. I am upset that we cannot truly put this behind us for now. If we don't do the surgery, I will forever worry. I have my own past with helmets and such during P.E., so maybe I am just blowing it all out of proportion because of my experiences.
Ultimately, I do not want him to have too many limitations or get hurt. Please give me an honest opinion. What would you do? Remember, he is fine cosmetically. The surgery would be more for long-term peace of mind.

Mom2William
03-06-2007, 02:51 PM
:hugg Cindy, sending you many hugs and good vibes. I can understand that you feel so overwhelmed. The initial surgery was not an option, but this is different. I honestly do not know what I would do at this point. Did the dr. say that you could wait a few years on the touch up surgery, when he is old enough to understand about being careful?

More later, got to go and pick up a child from school. I will keep you in prayer.
Kim

mom2mykidos3
03-06-2007, 04:30 PM
I know for me having my PS explain what the second surgery wouldn't be a major it made me feel better. I am afraid that if I was in your case I would do the surgery, just because he has a tenancy to be a daredevil. But ultimatly you have to feel comfortable with your decision.

Lori
03-07-2007, 04:44 AM
Hi Cindy. What a tough one. Honest opinion?... It sounds like you've already answered your own question. It's not cosmetic, it is about insuring his safty and his future safty...and I'm mad about it too.
Keep reminding yourself it's minor compared to the first one, and you are so almost done. Remember your bad experiences are from an acceptable cause. Your dad had the fight of his life against fear and the unknown with you, and look how terrific you turned out! Very intelligent, an educator, a wife and mother. I can only imagine how fantactic Simon will become.
Remember these kids will push us mothers to our limits! The stories I can tell! I want you to imagine the top limit you think you can take, multiply that by one hundred and you will have the sum of what you can take as a mother. My advice is to accept this always with a little humor and prepare yourself!
I know that you will look and consider everything before making any decisions and I am 100% behind you. I am sending you a big hug!

Jennifer
03-07-2007, 11:04 AM
:hugg I so know how you feel :hugg Everything is great and then they slam that information on you---- you don't have to do surgery, but you can. Who really wants to do surgery again? But, they aren't giving you the option 'just for the fun of it' are they? I also like being told it was something I HAD to do, not something I COULD do....such a difficult decision. I am sorry you have to make it. If it were me, I believe I would do the surgery- the what if's of him getting hit in the soft spots just the wrong way would be an ongoing stress- all the time, and not something I would want to deal with. It is ultimatly your decision- and you know Simon and your family best, and will make the best decision for yourselves- either choice- you will make the right one for your family. Good luck! :hugg

Katie
03-07-2007, 11:18 AM
Hi Cindy. What a tough one. Honest opinion?... It sounds like you've already answered your own question. It's not cosmetic, it is about insuring his safty and his future safty

I agree! We've got the same concern with Dillon Cindy. Not the soft spot itself, but open areas from the surgery that never closed. NS told us the same thing, the risks are minimal, but to me a risk is a risk when it comes to an open and exposed area of the skull. I think that if it wasn't already determined that Dillon would be having a second surgery, I would still want these to be corrected or I would flip out every time he bumps the side of his head :giggle
What ever you decide, you know we are all ehre to support you 110%. :hugg

plukids
03-08-2007, 02:49 PM
I agree with Katie. I would not want to take the risk. Good luck with your decision Cindy. I am sorry that you have to go thru all of this. I will keep your family in my prayers!

Lori
03-08-2007, 03:12 PM
Was thinking about you and wanted to let you know. It seems Jon Jr. needs to have surgery after all. I join you in the frustration on many levels! Stand strong and I keep you in my thoughts.

vancesmommy
03-08-2007, 04:52 PM
Cindy if I was in your situation I would probably have the surgery. Any risk is too much and like you said, you would drive your self mad worrying about that small chance. We are struggling with the decison of a second surgery mainly for cosmetic reasons, and I wish they could give me any kind of medically necessary reason to have to go through with it. Whatever decision you guys come to will be the right choice for you and Simon. We are all here for you!

Matthews Mommy
03-10-2007, 02:30 PM
Same thing with Matthew except they wanted me to do the surgery, but we are waiting for the bone to be more mature. I can't keep Matthew away from that stuff he really loves it so it's hard for us we panic everytime he jumps off of something too high...LOL!
I will keep you in my prayers.