Do we need a 2nd opinion?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

Moderator: pmaxwell

Do we need a 2nd opinion?

Postby tnajk » Thu Jan 26, 2012 11:41 am

My child is several years out from a successful Chiari Decompression by a well known Doctor. We have been very pleased with his care.

Recently his pain has returned and increased significantly to the point where we've had to add prescription pain medications. He was evaluated for shunt malfunction (he also has Pseudotumor Cerebri) and found to be working fine. An MRI was ordered and the results were abnormal (according to our Neurologist and the Radiologist) There is:

Markedly abnormal sine waves at both level of foramen and C2. (Velocities are 0.46, normal is considered less than 0.14) Low level turbulent flow below cerebellar tonsils. Complete loss of biphasic flow posterior to cervical cord and posterior to cerebellum with decreased biphasic flow ventral to pons, cervical cord and crowding of the posterior fossa with upward towering of the cerebellum.

In his past MRI (a yr ago) he had decreased flow posterior to the cerebellum, but none of the other findings.

Our current NSG does not seem to think there is anything wrong with the findings and wants to re-evaluate his shunt. (even though, it was just done a month ago)

For the first time ever, we find ourselves questioning this Doctor. Is it time for a 2nd opinion?

If so, can anyone share (privately of course) email addresses of well known Chiari experts so that I may ask them if they will evaluate our scans?
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
tnajk
 
Posts: 31
Joined: Wed Dec 09, 2009 11:36 pm

Re: Do we need a 2nd opinion?

Postby cari » Thu Jan 26, 2012 11:51 am

IMO-I think ANYTIME you are dealing with something this serious and are feeling uneasy, unsure, or questioning your Dr's response, you should get a second opinion. I don't know what type of insurance you have so you may have to pay for the second opinion out of pocket. For my daughter, we got 3 opinions (figuring the majority would rule). We were also pleasantly surprised that one NS @ a well regarded institution agreed to view the scans and meet w/ us at no charge.
To me, the worst thing that is going to happen is that the new NS will say the same thing and you may be out some time and $$, which cannot compare to your peace of mind. Follow your gut because in the end you won't regret being overly cautious and deligent.
I don't know which state you are in. Are you hoping to meet w/ another NS or just send them the information and scans?
cari
 
Posts: 13
Joined: Thu Nov 04, 2010 8:43 am

Re: Do we need a 2nd opinion?

Postby tnajk » Thu Jan 26, 2012 12:10 pm

At this time, we have EXCELLENT insurance that will allow us to go anywhere with minimal (Seriously, just $10) fee. In March, that may change (union renegotiation) so that is why I ask for email addresses because if I start calling around it could be March before I get any response from anyone. We travel 800 miles to our NSG now, so that is not a problem. Does anyone know of NSG that will respond to email inquiries. I know our current NSG does so that is why I wonder if there are others.
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
tnajk
 
Posts: 31
Joined: Wed Dec 09, 2009 11:36 pm

Re: Do we need a 2nd opinion?

Postby cari » Thu Jan 26, 2012 3:46 pm

We got an opinion from Dr. Jorge Lazareff @ UCLA. I emailed him from the UCLA website and he responded back the same day. I don't know if he will review the scans and give you his opinion without an office visit, but you could ask him. I found him to be very knowledgable, patient, and kind. He asked us a lot of questions about what symptoms our daughter was experiencing and spent a considerable amount of time talking about what to expect in the long term and the risks/benefits of surgery.
cari
 
Posts: 13
Joined: Thu Nov 04, 2010 8:43 am


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 2 guests

cron