Emily had her EDAS on her left side on 6/20/07 when she was 4 years old. At that time I was told by her surgeon in NYC, Dr. Langer that she would get an angio 12 ms. post surgery. I called his office the other day and his assistant informed me that Emily won't need anymore testing done. She did get an MRI and NOVA Study on 9/06 and 1/07. The results on 1/07 Dr. Langer had told me he was disappointed with the results because her blood flow hadn't increased at all since 9/06. This past March she had numbness in her left hand received an MRI and they said no new stroke damage then in April she experienced numbness in her left hand again and stumbled on her words for a few days then was back to normal. She did get an MRI again and still no signs of new stroke. She also has awoke three time in the past couple of months with severe headaches. Should I insist on an angio or have her records sent to another surgeon such as Dr. Scott in Boston or Dr. Steinberg at Stanford?  Thanks. :-/

Emily had her EDAS on her left side on 6/20/07

hello....I think you mistyped the surgery year LOL!

Anyhow....I had my surgeries at Stanford and they wanted me to do a 6 month angio and annually thereafter.....but I didn't go back because I was still entangled with an Insurance Appeal Nightmare.

So I went up to Cleveland Clinic for my follow-up and the doc there didn't want to do an angio stating it is carries risks.....and we only did an MRI/MRA. He wanted to do a Nuclear Spect Scan to show the oxygen levels....but the Insurance would NOT approve it....called it experimental. The doctor spent 1/2 hour fighting with them on the phone stating it is a standard procedure for MM patients...but they still denied it.

I noticed that you did not mention an MRA...Ahhhh....that's because Emily had the indirect bypass! (it just hit me...lol) Ok....moving on.....

What exactly is a NOVA Study?

BTW: you may have a great doctor at hand....but it never hurts to send your films/records for a second opinion. You will sleep better at night if they are both saying the same things and are on the same page. And....if they are opposing...then you need to make some decisions!

Oh and if the assistant tells you something that doesn't sit right...she could easily be misinformed....ask the doc....you need to hear it directly from him and why he feels a particular course is warranted.

Keep us informed...Diane : )

Hi Diane,
LOL, Yes, I did mean to type 6/20/06.
A NOVA study test measures the rate of blood flow in your head. I've been told that only about 8 hospitals in the country have the NOVA machine.

Hi, I have my 2nd surgery done on Nov, 2006 and my surgeon told me I need to come back in 1 year for angio, I do have numb on arm & leg now & then but MRI & MRA don't show any side of stroke either.

It always good for 2nd opinion, after my 1st surgery I send my MRI to Dr. Steinberg to double check( I'm insecure at first with my doctor :-[ :-[) and turn out Dr. Steinberg said that he could't do any better.  Just for peace of mind now I trust my surgeon 100%.  Hope it help.

Hug
Kieu

I think you've already answered your own question:ie. Don't leave it to a doctor to make decisions about your daughter's health but send her records to a specialist like Dr Scott who has an interest in MM straight away.

I had my surgeries 6 years ago now and I no longer need to be checked but I am still surrounded by specialists who have told me to call them when or if I ever need to.
If your daughter's blood flow is not optimal and she is having symptoms like numbness it seems to me like a no brainer- you have to follow it up now to avoid complications arising from lack of intervention. You are ultimately the one who needs to push the doctors to look at this as it is your daughter's health we are discussing here
Moira

Hi Diane,
I hope this helps.
You were wondering what the NOVA was?
 
 For more information, go to:
http://www.vassolinc.com/product.cfm
Our practice uses VasSol's NOVA (Non-invasive Optimal Vessel Analysis) to non-invasively quantify the volumetric blood flow rate in vessels of the brain. NOVA quantifies blood flow rates in vessels using standard MRI scanning. NOVA is the first technology to allow physicians to quantify blood flow in vessels non-invasively. NOVA incorporates interactive 3D images that provide a fully rotatable, 360° view of vasculature that allows for precise identification of each vessel for volumetric blood flow calculation. NOVA provides us with the flexibility to evaluate entire vasculatures or pinpoint specific areas within a vessel that may be of concern.

The NOVA Neuro system, focuses on the neurovascular region, which encompasses the head and neck. Specifically, the data gathered in the NOVA Neuro system has proven to be highly beneficial in diagnosing and treating individuals who are at risk for, or who have suffered from stroke and cerebral aneurysms, as well as those who suffer from neurovascular disease related to chronic medical conditions such as heart disease and diabetes. Following are actual case studies that have employed the NOVA technology.

Carotid Stenosis
Intracranial Stenosis
NOVA provides early warning of impending stroke in patient with right-sided TIA
Symptomatic Vertebral Occlusion
Symptomatic Vertebral Disease
Anterior Circulation Hemispheric Hemodynamic Ischemia in the setting of Occult Subclavian Steal
Intracranial Aneurysm

Yes, my surgeon here in Alabama Dr. Winfield Fisher,III @UAB Hospital always does the Angiogram 6 months out after the EDAS surgery.
I would insist on the Angiogram procedure for your daughter.

Take care and I'll keep you in my prayers.
Dana :D

Hello All,
Our local neurosurgeon here in Charlotte, NC, Dr. Joe Bernard agreed that Emily should have an arterial angiogram done. She is scheduled for July 11th at 11:30. Now I feel like I'm getting nervous because of the risk involved but it has to be done to be sure nothing is spreading to her right side.  
Thank you everybody for your advice.
Lori