OT: my daughters neurosurgeon visit

[addicted2harleys]

Hi, all-

Yesterday was a wash.  I was SO MAD wheeling out of his office.  Due to miscommunication and/or clerical error, our referral had not reached the surgeon's office.  They didn't tell us that though.  So, after waiting for 25 minutes in the waiting room, we were taken into a exam room.  

Just a side note that didn't completely register until I was in the car on the way home.  Two people came into the office while we were waiting.  Both were having issues with referral approvals.  One also had scheduling issues (they said appointment was this day and time, he said no way, he would never schedule any appointments earlier that 10 am.  

Anyway, the dufus-surgeon finally opened the door but never stepped in the room.  He proceeded to tell me about not having an approval for services so we would need to reschedule our appointment.  He never looked any of us in the eye.  He was rude (interrupting each time I began to speak).  He told me that we had nothing to worry about with the diagnosis or urgency on seeing a doctor for this disease because it is so very common, that if we were to look at 100 MRI's of people undx'ed, 90 of them would show this malformation and it not be noted in report.  Because it is no big deal.  He said it is highly uncommon and rare for anyone to have neuro symptoms with this disease.  And since Baylee didn't have any, she is fine.  I tried to tell him that she does have symptoms though and he interrupted just saying my daughter is fine.  

At that point, I said thank you, we will be leaving now.  The dufus-lady in the office caught us on the way out and proceeded to tell me EXACTLY what she had told one of the other people in the lobby about insurance approval, including that she would take care of it.  I swear if she would have flipped her hair to the other side of her head one more time, she would break her neck.  

We left the office and Baylee said she did NOT want to go back to him.  I told her not to worry, there was no way I would allow that.  No way in h e l l actually.  

Now, let me also point out something else.  When I first got Baylee's MRI report and saw the diagnosis, I began my search for a neurosurgeon for her.  When I contacted this dufus-surgeon they requested a copy of the MRI report.  They told me the surgeon would look it over and decide if he would see her or not.  They contacted me back and said he wanted to see her.  I then requested the referral, which I was told was approved.  

Anyway, when I got home there was a message on my voicemail from the dufus-lady.  She said she got the approval and was calling to reschedule Baylee's appointment.  This call was received 15 minutes after we left their office.  

I called my insurance first.  I asked about the referral, she informed me we were approved for the dufus-surgeon and the child neurologist Baylee's pcp requested.  I told them to disregard the surgeons referral and keep the other one.  

So, now we have an appointment with the child neuro for April 14th.   Needless to say, yesterday was a complete letdown for all of us.  And I also have a pretty p-off'ed teen in my home.  Frankly, I don't blame her a bit.  

Addi

[addicted2harleys]

Thank you all so very much for your support and back patting.  It means so much to me and continues to confirm to me that I am making the right choices, either for my own health care and now my daughters.  

Shell, he is the only neurosurgeon I could find in this area with her insurance that would accept a minor.  So we will go to the ped. neuro and see what he has to say.  If he feels we need a surgeon, I will ask him if he has one in mind.  I have already made the decision that she will have the surgery in AZ, if she needs it.  We move in June.  If we end up needing a surgeon, I would still go to one here....basically for the 1st opinion.  Then get the second opinion in AZ.  

Mary, thanks for pointing out the Thanks mom.  That really touched me and I needed it.  I do think she realizes it some.  I will say that she absolutely comes to me with anything medical now...symptoms and such.  And she listens to what I have to say.  So, that is a plus.  :)

Again, thanks so much to all of you.   Boy, we really are a wonderful group of very caring and supportive people, aren't we?  I am so proud to be a part of it.  :)

Hugs to all,
Addi

[twopack]

This forum leaves me speechless more often than any other life activity or event I can think of and it usually happens right after someone reports on a doctor visit.  Imagine that!!

I'm sure glad you are adept at handling out-of-hand docs, Addi.  Your daughter probably doesn't realize yet how lucky she is to have you as a mom and advocate.  She will one day.  Until then, here's your, "THANKS MOM!"

When life gets manageable again, think about reporting that office routine on some doctor rating sites online.  People look at those and sometimes I think reporting there is more effective than through medical licensing boards.  Besides, real people (patients) see it.

I'm continuing to keep you and your daughter in my thoughts.

Mary

[piggygirl17]

I'm SO sorry that you were treated so poorly, and that someone would have just disregard for the obvious fear that is associated with the unknown.  Even without the clerical errors, his demeanor was unacceptable.  But, I am proud of you for letting it go and moving on with the next.  Ultimately you will find what you and your daughter need, and it will work out.  I'm so proud of you for staying strong!

[sllowe]

90 of 100 will have the malformation? That is the biggest crock.
Can you tell the referring office to schedule you another neurosurg due to this incident?
-Shell

[torikat32]

Addi

what a jerk he was I am sorry to hear about the pronlems with Bailey I just got home from vaca and I am trying to catch up but I hope the new doctor will be better you and your daughter didnt deserve the treatment you received it seems that the higher title's these dam doctors receive they lack compassion towwards the very people they swore to help. Keep your head up and you both will be in my prayers

Kat

[twist330]

I don't know how you kept your cool.  it is even worse when you consider a child is involved.

I hope all goes well on the 14th, could this neuro recommend a surgeon? I not quite sure how the american system works.

Over her in the UK we moan about how slow the NHS is and in America you get seen quiker as it is all done privatley. Well having read this board for a while it seems the're about the same in services just different areas for complaint!

thinking of you both

Twist

[Cre8_it]

You certainly are going through a lot.  There is nothing worse than having a sick child, whether disease or disability etc.  And feeling as though the medical community is not helping.  I know what your saying about the whole mess up at the surgeon's office,  I waited 3 months to see a neuro who didn't know why I was there!  My GP's office didn't send him anything, complete waste of time.  And oddly enough, this neuro also wouldn't let me finish what I was saying either.  I think he interrupted me four or five times while explaining my sx.  

My GP's office also messed up on our son's paediatrician referral that we waited five months for!  He was actually kicked out of school because they didn't know what to do with him.  So it was extremely important to get his dx of Autism.  He was out of school for almost a full year because of the blunders!  These are the Dr.'s we really need to stay away from!    PS love the hair flipping maxi pad girl comment! LOL

I hope you get some real help for her from the neuro.
Hugs to you and your daughter

[Sumanadevii]

You know, Addi, I don't give a flip that this dx is common.  That shouldn't matter.  How dare him say she is just fine while she is complaining of headaches.  I swear if it gets worse take her to the ER.  This man shouldn't be a doctor.  He has no compassion to leave a child in pain.  I could say more but I would get tossed off the board.  I skate here anyway...lol

[Guitar_grrrl]

What a jerk that surgeon is.  Sorry you and Baylee had to go through this...

[RazCarver]

Addi,
her neck must already be broke and she was trying to balance her head to make it appear it's attached. obviously it isn't. just reading your post I was imaging slapping her head clean off. bad me and i wouldn't do it except in my mind. sorry you and your daughter had to deal with this.

Raz

[drsdonthelp]

Addi,
I give you alot of credit for having to put up with all you have been dealt with. Good luck with finding a new neuro. One of these days i will get enough guts to pull a Donald Trump on my neuro and say, "YOU'RE FIRED!!!!!! " LOL

Pam

[addicted2harleys]

Julie-
Thanks for the vote of confidence.  :)  That is absolutely true, now that I look back at other instances.  The office staff does play in the overall view, for sure.  Thanks!

JJ-
Lol, you always make me laugh.  Thanks for that!  And the support.  

Oji-
I think I will send the dufus hair flipper a couple of maxi pads.  I don't have any spare shoulder pads so this should do the trick.  I will send her the fresh scent ones.  :)

Lulu-
I know, I know.  It bites that it does take longer for neuro related healthcare.  I keep having to remind my mother of this.  The only thing she has on her mind is...granddaughter...brain surgery...death.  :(  No matter how much I tell her that she isn't going to die and how much info I give to her to read, her mind stays there.  

Baylee is still a bit stressed.  I do feel bad for her and wish I could just take this all away for her.  I do wish she could at least get something besides Tylenol for her headaches, as this does nothing for her.

My stress level kind of peaked during and after the surgeon appointment.  By the time I got home, my mind was refocused on what I had to do next.  I really am ok with having to wait another three weeks to see a specialist, as I know that nothing bad will happen to my daughter in that amount of time.  On top of that, her c-spine MRI is tomorrow so when she sees the new neuro we will have that and her brain one on hand.  

Now, I do have a question.  How the heck do you prescreen a neuro??

Thanks all,
Addi

[Lulu54]

Good for you to leave this one in the dust.  If the need arises, you can start searching for one who has a personality and an efficient office staff.

This had to have been so stressfulfor you and your daughter- just keep remembering that neurological time takes a long time - everything is slower, including doctor appts.

sorry again about your day, Lulu

[Ojibajo]

I hope dufus-receptionist wears shoulder pads to protect her head from all of that head flipping.

I'm glad that you are not going back there again and that you found another neuro. Good luck to you both.

[supermum_ms]

Dufuss that was putting it mildly!

He may be right about 'sx are highly uncommon' but that still doesn't mean Baylee sx are not related to the chari. &^%#$@ especially if patients are not even examined before he determines in his 'professional opinion', that they are 'fine'!

Ahhhhhh it doesn't instill confidence when the place is so disorganised.....

surgeon: Mr Smith i'm just removing the tumor on the left side of your brain
Patient: LEFT! My tumor is on the right!
surgeon: No, thats the other Mr Smith
Patient: I am the other Mr Smith!
surgeon: No, I saw you yesterday

You get the picture, the dufus wouldn't be touching my child either!

HUGS...........JJ

[Sarahsmom46]

Addi, as I was reading what happened today all I can think of is how truly unacceptable this was.  That office is not only full of incompetant staff, but the neuro as well.  I heard someone once say here that you can tell a lot about the doctor by the staff he/she hiress.  

I am thrilled that you were so on the ball that you put another plan in motion and you SUCCEEDED!!  Good luck with the appointment on April 14th.  I have no doubt you and your daughter will be happy with this change of doctor's.  

You are such a fighter.  Keep it one.

Julie