' Neurosurgeon Appt - LONG

[Guest guest]

Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

happen as right about the time of our appt, the nurse made an

announcement to the waiting room that the Dr. had been called to

emergency surgery and we could reschedule or wait. Hubby and I

decided to wait since we had already waited four weeks (with one

reschedule in there) Glad we did, because about 1/2hr later, we were

called in. The guy barely looked at , measured his head by

putting the tape measure around his eyes and told us his plagio was

very mild and that he has seen hundreds of cases and they have all

rounded out on their own - even the severe ones. That it would take

a long time so the fact that we have seen no resolution over the past

6 months means nothing. He also told us that gravity caused it and

gravity will put it back. Is this guy a quack or what? Aren't we

all subject to the same gravitational forces? Now I am wondering if

all these road blocks are the signs I have been asking for..... I

have heard at least two more stories of severe plagio rounding out on

its own and all these doctors keep telling me it will, just be

patient. Then again, this neuro told me that for the helmet to work

it would have to apply so much pressure that it would put holes in

the skin and would be so hot and uncomfortable that the baby would be

miserable (which is, of course, completely contrary to everything I

have learned about helmet therapy). Further, he said that the couple

patients he had that went with helmet therapy had these problems and

were also upset that after several months they weren't seeing any

results. He says that with or without the helmet it is going to take

a long time to round out. He reiterated what my ped said about the

studies being the manufacturer's way of making you buy their $3,000

product. Then he said he wanted to do xrays to rule out suture

closure so make an appt with the receptionist for two to three weeks

from now. If cranial synostosis is a concern, why would he wait that

long? would have to be sedated for this and I am not sure I

want to do it. It doesn't seem as though the dr is really concerned

about it. And wouldn't his head be severely misshappen at 10mos if

the suture were closed? Keep in mind that we first noticed the

flatness at around 3mos and it hasn't gotten any worse since then. I

had at CT fax over her measurments and opinion to this guy and

it was quite obvious he never looked at it. I really didn't get to

ask all the questions I wanted too because was getting fussy

and biting my shoulder and the dr was standing at the door with his

hand on the knob almost the whole time.

Well, I am sure I have rambled on long enough.

Kristi

(10mos) and (4)

OH

[Guest guest]

Wow - I don't even hardly know what to say about your appt, except what a

complete goober he sounds like! I'm afraid that so much of what he said

sounds so outlandish that I'm just not sure I would trust his judgement on

anything. This group includes so many people who had success with bands and

helmets and they sure as heck did not put so much pressure on the head to

cause holes!!!! What the heck?? Also, there have been people in this very

group who say they suffered from untreated plagio and grew up being

self-conscious and teased about their headshape - it sounds like the plagio

did not correct itself in those cases! Action needs to be taken in some form

(helmet, repositioning, physical therapy, etc) no matter how mild or severe

the case is to treat the condition.

Of course, you really have to go with your own feelings and gut instinct on

this one, but I wonder if you could get a second opinion? Most insurance

companies will pay for that. Best of luck with whatever you decide.

[Guest guest]

Kristi,

Whoa- time to look for another neuro for sure! My neuro was really not even

involved in my decision making, he sent us for the MRI- told me his tort was

severe and said, go find some pt! I brought him back at 6 months for his

re-eval, with the DOC band on (who by the way, is about 5 minutes from his

office), and he had no clue about it! He admitted this however, and I have

given him information and even saw a packet with his mailing address at CT-

so I guess he was curious at least! Anyway, point is, go with your own

instincts- educate yourselves (because he isn't!) and make an informed

decision that you can live with and be confident in. Good luck- this was the

hardest part for us- just to make THE decision with such conflicting points

of views to wrangle with!

' Mom