Quantcast

AVM Survivors Network

Rocommendation of Doctor for Children


#1

hi All,
my son Nikolas 6 years old, has a 4,1cm AVM of the left occipital lobe, with evidence of the previous bleeding. the critical issue is has also deficiency of factor V (blood caogulation) that creates high risk in operation.
we have contact Dr Edward Smith in Boston children hospital, who can take over Nikolas surgery.
has anyone contact Dr Edward Smith, any feedback?
do you know if Michael T. Lawton operate children?
thank you for your feedback
Eleni


#2

Hi Eleni,

My son was also diagnosed with a left occipital lobe AVM that is 5cm so very similar. We were lucky and did meet and consult with Dr. Lawton at UCSF. A few months ago he took over as the leader at the Barrow Institute in Phoenix taking over for Dr. Spetzler who retired. The short answer is that he does operate on children and I would highly recommend engaging the Barrow Institute and even UCSF where Dr. Lawton’s pediatric partner was Dr. Nalin Gupta. In our case his AVM was too risky for surgery so we opted for Gamma Knife treatment. Dr. Lawton was key in helping us decide on this path.

thanks,
Jeff


#3

Hi Jeff,

Thank you very much for your quick response!
In reality we have contact Katoliskna hospital in Sweden who are specialist in Gamma Knife, their consultancy was that Nikolas AVM is too big to perform Gamma Knife!

How is your son ? Any affect from Gamma Knife?

Thank you again z


#4

Hi Eleni, my son Aaron was diagnosed AVM in left temporal lobe and we have been conacting Dr. Edward Smith at BCH. I actually received a wrongly dialed phone call from him 2 days ago, addressing me as “parent of Nikolas”. I hope you’ve had a chance to speak to him. We’ve been contacting both the UCSF and BCH, so far BCH has confirmed a schedule for exams and surgery in early December. I don’t know how the US hospital system works, @jrichard Once Aaron had his MRI and angiogram at BCH, would it be possible for me to hold back the surgery at BCH and consult more opinions from UCSF and other places? I’m kind of worried that they’ll rush him to a surgery as scheduled.


#6

hi Findjia,

yes indeed we spoke with Dr Smith on Tuesday night, he confirm to operate Nikolas and he suggested to contact international office since we are located to Athens Greece.
last July we made to Nikolas MRI and angiogram to Rothchild hospital in Paris by George Rodesch who is head of department Diagnostic and Tehrapeutic neuroradilogy, in order to embolize but it was not possible since AVM is diffuse. i would strongly recommend as doctor and Human, he contacted Dr. Orbrach in BCH and Karolinska hospital to provide solution.
Today i had an appointment with a head of neurologist in Greece where he studied in USA, he also mentioned that the top is Dr. Lawton!
all the best and keep calm and strong


#7

hi,

i wish all the best! please keep us inform!
for us both choices are far since we are in Greece but i start to be convienced that i need to contact Dr. Lawton.
could I ask which is the cost of the surgery?
All the best for your daughter and please keep up.


#8

Hi Eleni,

I was travelling and delayed on responding from yesterday. It looks like you are making good progress in the last day. I would go ahead and contact the Barrow Institute and Dr. Lawton. They are very much used to handling patients from all over the world. Good luck and keep us up to date on your progress.

You asked about my son and the effect of Gamma Knife…he has been getting headaches every day which is likely due to the radiation…so we are trying to manage that. Otherwise no issues so far.


#9

So are you going to take your son to BCH to be treated by Dr Smith and Dr Orbach? Or are you thinking of contacting D Lawton? It’s painful being international patient, everything takes so long and lots of document needs to be translated.

发自我的iPhone

------------------ Original ------------------


#10

Hi,

In case of my son the only option is surgery, in BCH if we choose surgery will be perform by dr Smith and angiography by dr Orbach. Before I decide I will contact Dr Lawton to provide his consult since is consider as the best in the world. FYI intervention radiology Congress is taking place in Boston where dr Rodesch is participating and he will discusss Nikolas case with Dr Orbach, as soon I receive his feedback I will inform you!
I don’t if it will help you but when we found out AVM I sen MRI scan to many doctors before I decide,
Take care anything you need let me know


#11

Thanks Jrichard,

For sure I will keep you posted,
All the best for your son! And thank you for your support
E


#12

hi,

i hope you are well, have you decide where will you perform the surgery?
did you talk with Dr. M. Lawton?
i would like to ask you more details since you are also internatational patient, if you can write to my email address: XXX@XX it would be grateful

thank you in advance
eleni


#13

Hi Eleni,

I have removed your email address for your online security. Members can request your contact information via private message by clicking on your avatar, and then on the blue message icon.

All the best to you and young Nikolas,

Christina from Mod Support


#14

Dr Lawton did my 8 year old daughters surgery 14 days ago. He is a miracle worker. Let me me know if you would like more details.