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Message
re: 1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)
Posted on 6/17/14 at 6:43 pm to ILikeLSUToo
Posted on 6/17/14 at 6:43 pm to ILikeLSUToo
Gotcha, since it's one fusion and he's so young, endoscopic May be the better approach, but obviously they'll make that call. The other good thing about the cranio clinic at children's is that you'll see a number of specialists to rule out any other possible contributing factors, including geneticists, therapists, etc.
It sucks as a parent regardless of the operation chosen, and you'll probably be shocked by how minimal they use pain meds, but the good news is he babies will never remember th operation. As far as having to reopen ate, I last heard that it's 98% one operation and done! but don't quote me on that.
Also, they'll involve you with early steps if you want and there's a cranio Facebook group called cranio Care Bears. Lots of good info and support there.
I should also add that the best results come from strict adherence to the helmet schedule. A lot of the issues for the head come from lack of compliance. The bones in question permanently fuse at 18-24 months, so if you guide them correctly to that point, you'll see the best results.
It sucks as a parent regardless of the operation chosen, and you'll probably be shocked by how minimal they use pain meds, but the good news is he babies will never remember th operation. As far as having to reopen ate, I last heard that it's 98% one operation and done! but don't quote me on that.
Also, they'll involve you with early steps if you want and there's a cranio Facebook group called cranio Care Bears. Lots of good info and support there.
I should also add that the best results come from strict adherence to the helmet schedule. A lot of the issues for the head come from lack of compliance. The bones in question permanently fuse at 18-24 months, so if you guide them correctly to that point, you'll see the best results.
This post was edited on 6/17/14 at 6:50 pm
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Posted on 6/17/14 at 6:48 pm to ILikeLSUToo
quote:
referral to the Children's Hospital in New Orleans to see Dr. Lori McBride
I read the rest of your post, and that does sound beyond infuriating. I have worked with Dr McBride before. She is a phenomenal physician and a great human being in general.
I have also worked with Dr Roberts who works out of children's as well. He truly cares for his patients. I was following a patient of his one time, and I saw him in the patient's room and had a quick 30-45 second chat with him. 2-3 days later, the patient took a turn for the worse, and he saw me in the hallway and stopped to tell me (the medical student) informally about what happened and his plan going forward. This isn't something that I really wouldn't expect from a neurosurgeon, but I don't expect any attending to stop in an informal setting to discuss patient care with the "low man" in the group. Further, this patient was an infant female. After he operated on her, she came out with her head wrapped, and he, personally, tied a bow in the surgical wrapping. Again, this may seem like very little, but putting that kind of dressing on is something that falls to the least talented person in the OR 90% of the time at minimum. He also is just a grade A guy that I can't say nice enough things about. I haven't worked with the other two neurosurgeons at Children's, but if you're in either of their hands, you should feel well cared for. Let me know if there's anything I can help with. I'll admit Ped neurosurgery is not an area I am particularly strong/familiar with, but I am happy to offer any sort of advice/insight/general information about whatever I can (including Children's Hospital in general).
Hopefuldoctd and that's at that google mail service.
Posted on 6/17/14 at 8:04 pm to ILikeLSUToo
quote:
Nope, none of that happened. Instead, he said that this is an extremely rare form of craniosynostosis that he knows little about.
Damn... that sucks.
Sorry...
(Neurosurgeons... some have the biggest egos in the medical profession. A lot of times egos does not equal skill. So it may be a blessing to go somewhere else.)
Posted on 6/17/14 at 8:06 pm to Hopeful Doc
Thanks for the info. Hopefully, this will be the last stop to actual answers. I feel like today's visit with Dr. Joseph's office was just straight up fraudulent. All-too-familiar scenario back when we were getting nickle-and-dimed with specialist copays with my daughter's hip dysplasia issue. Obviously, we'll spend what we have to spend to get him treated, but not just because another doctor needs a second slice of the healthcare pie. Money's getting tight and we've been having to make some sacrifices already. 
Posted on 6/17/14 at 8:16 pm to ILikeLSUToo
You are right for being livid, the timetable is scary and unacceptable as a parent. The doctor bringing you into explain referring you out though is sort of a double edged knife. Seems almost negligent to just give you the information of a rare condition effecting your child via phone.
Posted on 6/17/14 at 8:21 pm to ILikeLSUToo
Dr. McBride is a beast. I did my clinicals in the neurodiagnitics dept... Scheduling an eeg will take a while fwiw ;/
This post was edited on 6/17/14 at 8:25 pm
Posted on 6/17/14 at 8:28 pm to ILikeLSUToo
Sorry to hear about your delays and frustrations. Hang in there, as best you can. Praying for you all.
Posted on 6/18/14 at 11:33 am to lsuwontonwrap
I guess Dr. Joseph's staff could sense my fury and decided not to drag arse this time. We have an appointment at Children's on Monday. Good thing, too, since apparently these surgeons are only at New Orleans Craniofacial clinic once a month, which happens to be Monday.
Posted on 6/18/14 at 11:35 am to ILikeLSUToo
quote:
Well, today was the appointment, where, according to the nurse on the phone a few weeks ago, the doctor was to go over the CT scan results -- the ones he had in his possession for 3 weeks -- and discuss our options going forward, and possibly schedule a surgery date.
Nope, none of that happened. Instead, he said that this is an extremely rare form of craniosynostosis that he knows little about. The appointment consisted of him telling us he will be calling us back with a referral to the Children's Hospital in New Orleans to see Dr. Lori McBride. If we don't hear from him "within a week or so," we should call him to follow up for the referral and appointment date. Still need to find out for myself if they are even in my fricking network.
We waited 3 weeks for something he could've told us over the phone in 30 seconds. Instead, it was another $60 copay out of pocket for us, another insurance check for him, and nearly a month of time thrown away. My wife is a teacher, had the summer off, and had he just looked at the CT scan and did a referral, we might've actually had a surgery date by now that could coincide with my wife's summer time off. Pretty certain that another week to schedule the appointment, plus god knows how far out the appointment will be scheduled, with no actual surgery date in sight, that it'll be well into fall before anything happens.
Beyond livid.
I am so sorry, I would be livid as well! Raise hell and get your boy the care he needs ASAP!
Posted on 6/18/14 at 11:35 am to ILikeLSUToo
that's screwed up, im mad for you.
did you voice your displeasure at all?
did you voice your displeasure at all?
Posted on 6/18/14 at 11:37 am to Lester Earl
this is when the doctor has the employee buffer the patient or the parents away from them
i would consider a complaint with the state boards for negligence
i would consider a complaint with the state boards for negligence
Posted on 6/18/14 at 12:35 pm to Rouge
quote:
i would consider a complaint with the state boards for negligence
THIS!
Posted on 6/18/14 at 12:52 pm to ILikeLSUToo
Excuse my French, but I wouldn't have paid that SOB. I would strongly re comment that you call NMC and complain. Yours will not be the only complaint against that bastard. I am really so sorry. Hoping you paid by check or cc so you can stop payment on check or better contest the charge.
ETA call the administrative office at NMC and follow with a letter.
ETA call the administrative office at NMC and follow with a letter.
This post was edited on 6/18/14 at 12:54 pm
Posted on 6/18/14 at 1:41 pm to Lester Earl
quote:
did you voice your displeasure at all?
I'm not one to make a scene over something like that (though it probably was warranted in this situation), as I just wanted to get the referral in a timely manner without any additional hiccups. I'm sure the staff could tell I was mad by the complete 180 in my body language and demeanor post-appointment. I'm also sure they don't care.
Now that I officially have an appointment with Children's, I can wash my hands of Dr. Joseph and his staff. Children's hospital actually called us to confirm the appointment approximately 4 hours before Dr. Joseph's office called us to say they made the appointment.
I'll probably file a complaint just to add another one to the books. I also have considered contacting my insurance company about this, but I just assume Blue Cross would gladly deny the claim, and I would instead receive an inflated bill from the neuromedical center that I would have to fight. Now, I am all about fighting things on principle, but with everything else going on -- getting proper treatment for my son, dealing with my daughter's recent bronchiolitis/asthma flair-up that involved an ER visit, still working full-time, trying to make as many household budget cutbacks as possible (shortly followed by my central AC malfunctioning) -- I'm really just tired and low on resources.
This post was edited on 6/18/14 at 1:44 pm
Posted on 6/18/14 at 1:52 pm to ILikeLSUToo
quote:
I am all about fighting things on principle, but with everything else going on -- I'm really just tired and low on resources.
Hang in there....things will get better.
McBride has performed two surgeries on my niece (not similar to your situation) and one on a good friend's daughter who also has craniosynostosis. Both of them raved about her. Your son will be in good hands.
Posted on 6/18/14 at 2:14 pm to ILikeLSUToo
Glad you have an appointment And that's it's soon. Good luck to you and your family.
Posted on 6/18/14 at 2:43 pm to ILikeLSUToo
Glad you're getting answers and most importantly the needed appointment.
I would call the original MDs office and speak with the office manager and just explain your concern ... I see it as insurance fraud. Not worth FIGHTING over but definitely I'd voice my concern. Copay or no copay, that could have been really handled over the phone ...
I would call the original MDs office and speak with the office manager and just explain your concern ... I see it as insurance fraud. Not worth FIGHTING over but definitely I'd voice my concern. Copay or no copay, that could have been really handled over the phone ...
Posted on 6/18/14 at 3:01 pm to ILikeLSUToo
quote:
ell, today was the appointment, where, according to the nurse on the phone a few weeks ago, the doctor was to go over the CT scan results -- the ones he had in his possession for 3 weeks -- and discuss our options going forward, and possibly schedule a surgery date.
Nope, none of that happened. Instead, he said that this is an extremely rare form of craniosynostosis that he knows little about. The appointment consisted of him telling us he will be calling us back with a referral to the Children's Hospital in New Orleans to see Dr. Lori McBride. If we don't hear from him "within a week or so," we should call him to follow up for the referral and appointment date. Still need to find out for myself if they are even in my fricking network.
We waited 3 weeks for something he could've told us over the phone in 30 seconds. Instead, it was another $60 copay out of pocket for us, another insurance check for him, and nearly a month of time thrown away. My wife is a teacher, had the summer off, and had he just looked at the CT scan and did a referral, we might've actually had a surgery date by now that could coincide with my wife's summer time off. Pretty certain that another week to schedule the appointment, plus god knows how far out the appointment will be scheduled, with no actual surgery date in sight, that it'll be well into fall before anything happens.
Beyond livid.
Man, I'm so sorry. This is beyond pathetic. Doctors like this fricking jackass are one of the reasons for medical costs being ridiculous.
I hope you chewed some arse and let them know it was horseshite.
I would do my own research and make some calls to doctors on your own.
Posted on 6/18/14 at 3:03 pm to tiger91
I strongly recommend that you do a consult with Dr Rick Boop in Memphis. He is the top pediatric brain surgeon in the country. People literally fly in from all over the world to have him operate on their children. He operated on my child when she was 5. Phenominal surgeon and a better human being. He will explain everything to you in as much detail as you like. He will not cut for the sake of cutting. We started with Joseph here in Baton Rouge. We did not have a good experienece. I know many that have had good experieneces with both Joseph and the doctors at Children's in NOLA. The difference is that the group in Memphis perform these surgeries (pediatric brain surgeries) multiple times a day. They have seen and experienced it all. Their theater is state of the art. Their staff is as well trained as it gets. Lebonheur Hospital has a seperate wing designated for just pediatric nureo surgery patients. Its only a 5 hour drive. At the minimum I would consult with them just to get an expert opinion.
Posted on 6/23/14 at 9:00 pm to ILikeLSUToo
Today was the Children's Hospital appointment. We had to wait over an hour in the exam room, but once Dr. McBride met with us, I understood the reason for the wait. The amount of time she spent with us was probably longer than any of my son's appointments with other doctors combined. She even looked at the CT scan images before even coming into the room (we brought the CD with us), explained his condition thoroughly, and was ready to talk treatment options.
She presented us with the two options for surgery -- the traditional invasive one and the endoscopic. I expressed my concerns with the endoscopic method perhaps not having as high of a success rate, but she assured me that was not the case. She seemed to be a bigger proponent of the endoscopic approach because of the lower risk to the baby. The drawback to it is that he'll have to wear the helmet for a year, and it will involve lots of driving to and from New Orleans for fittings and adjustments (couple times a month for the first few months). It'll suck, but I think it's the way to go. Clearly, it's a pretty routine procedure for her. I saw about half a dozen babies with helmets in the waiting room. Although... I have to admit that part of me wonders if the endoscopic method is pushed harder due to the fact that this hospital is the only place in Louisiana that sells the post-op helmet.
We should hear back by the end of the week on a surgery date.
Glad to finally have my son in competent hands, though.
She presented us with the two options for surgery -- the traditional invasive one and the endoscopic. I expressed my concerns with the endoscopic method perhaps not having as high of a success rate, but she assured me that was not the case. She seemed to be a bigger proponent of the endoscopic approach because of the lower risk to the baby. The drawback to it is that he'll have to wear the helmet for a year, and it will involve lots of driving to and from New Orleans for fittings and adjustments (couple times a month for the first few months). It'll suck, but I think it's the way to go. Clearly, it's a pretty routine procedure for her. I saw about half a dozen babies with helmets in the waiting room. Although... I have to admit that part of me wonders if the endoscopic method is pushed harder due to the fact that this hospital is the only place in Louisiana that sells the post-op helmet.
We should hear back by the end of the week on a surgery date.
Glad to finally have my son in competent hands, though.
This post was edited on 6/24/14 at 12:37 am
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