inconclusive CT scan

[jessie2005]

My daughter had a CT done yesterday and to make a long story short we do not know a lot more than we did when this started. The Dr. we are working with is away until the end of next week and the assistant at his office read me the radiologist report and it sounds as vague as it gets. I asked her if we could get clarification from the Radiologist and she said the Dr. would have to do that next week.

I am very frustrated because I thought the CT was supposed to clear up any doubts we had about what is going on. The report said at 1 spot "mild scaphocephaly" and then later said visible saggital suture. Huh? It makes no sense all the way around and I am very upset about it. Anyone else have this type of experience? The Dr. office basically told me that I am going to have to wait until he is back. I am of course considering switching offices after this...but I do not want to get another CT done.

[Matthews Mommy]

Hey, I had 2 CT's and an x-ray done before we got a complete 100% confirmation altogether 3 months till he went for surgery, it was the most heart wrenching experience I was in and out of anxiety, but you just have to try and be patient and you will get your complete results, switching doctors may be what is best if you really are not comfortable with how you are being dealt with.
My sons reports were a bit different one said near complete closure of saggital, one said partially fused, and the best one was the 3D with bone windows it said he had secondary dolicocephaly, and saggital synostosis.
the 3D with bone windows is the best CT to have done because it is more extensive. The asisstants never release the information the doctor always gives the results, but you can however request a copy of the radiology report, I keep all of mine on hand for my sons appointments, it has helped clear up a lot for my son. Good Luck and If you ever want to talk I am here all parents who have gone through this understand how frustrating it gets. I am going through this the second time around, and cant stand it.
Josette

[jessie2005]

Hey, I had 2 CT's and an x-ray done before we got a complete 100% confirmation altogether 3 months till he went for surgery, it was the most heart wrenching experience I was in and out of anxiety, but you just have to try and be patient and you will get your complete results, switching doctors may be what is best if you really are not comfortable with how you are being dealt with.
My sons reports were a bit different one said near complete closure of saggital, one said partially fused, and the best one was the 3D with bone windows it said he had secondary dolicocephaly, and saggital synostosis.
the 3D with bone windows is the best CT to have done because it is more extensive. The asisstants never release the information the doctor always gives the results, but you can however request a copy of the radiology report, I keep all of mine on hand for my sons appointments, it has helped clear up a lot for my son. Good Luck and If you ever want to talk I am here all parents who have gone through this understand how frustrating it gets. I am going through this the second time around, and cant stand it.
Josette

Thanks for responding. I had a CT done last Summer the 1st time she was flagged for this (came back negative) and now this was # 2. She has also had 2 rounds of x-rays done. I do not like the idea of multiple CT scans. I know she will have to have one after surgery too and the radiation concerns me. I will do what I have to in order to get good results that are reliable...but I am just very frustrated at this point. I do not understand why the radiologist could not just say ___ suture was open, ___ suture was closed. The report is so confusing that even the Dr.'s assistant said she could not make heads or tails of what it was saying.

I hope that your son's appt. goes well and I wish you luck.

[jessie2005]

anyone else? Need some direction as to where to go next. Thanks in advance.

[Jennifer]

Hmmm..... I beleive a good NS will read the scan itself-- will not go off of the radiologist report as they just give a vague description and do not specialize in one thing (Like a NS who just deals w/ the head and spine). I recieved copies of the radioligist reports and from reading Emily's last report you would think her coronal suture was fused again (it was not). So, I personally wouldn't even try to figure it out. Wait the week for the NS to review it. See what he/she has to say. I wouldn't want an assistant trying to make a diagnosis (no offense to all the awesome assistants out there!!!). If you are not thrilled w/ this NS office- definantly go get another opinion. You shouldn't have to get another CT- they can provide you with a copy to take with you. Sorry for all the waiting and confusion- next to the surgery, I think it's the hardest part of this cranio journey :Hugg

[craniomommynbaby]

The waiting is the hardest part of all this. I would agree about waiting for the ns to tell you the results. Sometimes, reading these reports is so confusing and can cause us so much stress. Getting a second opinion is a good call anyhow, but having to wait for things is not unusual. In the meantime, we will be here for you to vent or ask questions or shoot the breeze or whatever.

[jessie2005]

ok,
Got an email from the Dr. and he had one of his colleagues look at the CT scan (since he is out of the country currently) and he sees no closures. This is so confusing. We have been through 2 CT scans now and have seen 2 radiologists at 2 different hospitals and now a CF plastic surgeon. I am comfortable with the no closure situation but I wonder if I should still be concerned. At this point I have it in my head that something is wrong because of all the scares...but I am not sure if it is paranoia or mommy gut.

I am going to talk to him when he gets back and ask some questions about other options. Surgery will not be necessary based on his email...but I wonder if anything else is a good idea (helmet therapy, etc.). Argh. I am so happy that she will not need surgery but all the worry has now convinced me that she looks "different" or needs something. I think she is gorgeous but I worry that there is something I am missing. I am going to ask loads of questions once I get to talk to the Dr. one on one because he was so convinced prior to the CT scan that she had cranio.

[Scotwr]

Jessie,

We are in the same boat as you basically. The CT last week showed that everything looks ok, but it was not a 3-D scan and Duke wants us to have one of those. Either way, I had just about convinced myself that something was definitely wrong, even though I can hardly even see the difference in his head shape. Now, I am worse than ever. I find myself looking for a bulge over his eye, staring at his head from different angles, etc. I am trying to relax and enjoy the good news, hoping that there is nothing worse to come. Who knows...maybe this is the correct diagnosis for both of us. I certainly wouldn't wish this on either of our children! Let's enjoy the moment for now anyway....regardless of what comes later on!

[Jennifer]

I am so happy that she will not need surgery but all the worry has now convinced me that she looks "different" or needs something. I think she is gorgeous but I worry that there is something I am missing. I am going to ask loads of questions once I get to talk to the Dr. one on one because he was so convinced prior to the CT scan that she had cranio.

What made him convinced she had cranio? I would definantly ask about that...I would love to see a picture of her.....do you know what makes her look 'different' in your eyes (I know sometimes it's not one thing, just something though..)


I hope they are correct and you do not have to go through surgery. I also hope that you do get some satisfying answers......You need to be able to be put at ease :hugg Good luck! When do you get to actually meet with the Dr?

[jessie2005]

What made him convinced she had cranio? I would definantly ask about that...I would love to see a picture of her.....do you know what makes her look 'different' in your eyes (I know sometimes it's not one thing, just something though..)


I hope they are correct and you do not have to go through surgery. I also hope that you do get some satisfying answers......You need to be able to be put at ease :hugg Good luck! When do you get to actually meet with the Dr?


I will add photos. Basically the only reason they think she has cranio is because she has a long, slender head.


http://i8.photobucket.com/albums/a34/jessie78/maxinecomp.jpg

[Matthews Mommy]

She is so beautiful, her head looks fine to me! maybe a slight narrowing on the sides, but she is gorgeous. Hope everything works out. Mommy's gut is usually correct, always stick to your strongest feelings about your child you know best.
Josette

[jessie2005]

Hi all,
Finally met with Cranio facial PS at UNC Childrens Hospital Well, for the 2nd time it was determined that all sutures are open (per CT scan) so no surgery is necessary. It is so hard to go through these rollercoaster rides.

It is almost like I am having a hard time letting it sit in because this is the
2nd time we have been through a CT scan/ diagnosis scare. I am very relieved that all of her sutures are open, but I still feel so freaked because this came up 2 times now. Anyway, thanks for everyone's support! She just has a long head, no cranio.

[Mom2William]

:woohoo Awesome News!!!
I am so glad that she is fine and all her sutures are open. You must be thrilled too!!!!

[KALEMSMOM]

Happy to hear that there's no cranio. She's a doll and her head looks great. Don't forget, everybody's head is different shapes without cranio, I'm a head picker now and I look at adult's heads and let me tell you, there's a lot if diffferent head shapes out there. Glad that you can put all behind you, I don't wish this upon any parent.

[Jennifer]

Thanks for the update. I'm glad it came back that all sutures are open....I'm glad you got some answers! You must be soooo relieved!

[plukids]

Hooray for you! I always tell myself that it is my job to worry. I am glad your results came in not showing cranio!!

[Matthews Mommy]

:wave2 horray thats wonderful news I am so happy your worry is over!