anyone have treatment in Boston and NE area?

[Geminigirl]

Hello all,

Looking to connect with people who have had treatment/consults in the Boston area. I live in MA and not dx nut have upcoming MRI. From what I have researched, there is only one GK at Tufts NE Medical Center and a CK at another hospital. MGH has Proton Beam-

Also interested in surgery at Boston area hospitals such as MGH.

Thank you!

Gemimigirl

[ppearl214]

Hi Geminigirl and welcome,

You may have also sent me an email from the WTT list, although I am not 100% sure..,.

CK is at Beth Israel Deaconess as that is where I had my treatment coming up on 10 years.  Boston, as you may have been finding out, is a medical mecca for AN treatment options.

I think the key, at this point, is confirming diagnosis with the MRI (should be with contrast) to confirm if you have an AN or not. There are many other ailments that can mimic an AN.  When you have the MRI, that will be key as to how you pursue your research. My hope is that you do not and the scan will give you insight as to what is going on.

If it is an AN, there is a wealth of info for you to  obtain, from the WTT list to these forums.


When is your MRI?

Hang in there!
Phyl

[Geminigirl]

Thank you! Yes, it was me who sent you an email. Your name was on the AN List. I looked at the CK info for Boston and wondered how experienced they are using it with AN since they also seem to use it for a lot of other things. I would love to talk with you sometime if that's OK.

Is there a reason you chose CK over GK or surgery if its OK to ask?

[ANER]

Gemini, I live in the Boston Area and am being seen at MEEI and MGH..  Currently watch and wait... I am interested on how your journey goes.  Feel free to pm me.

[Troutbc]

Hi,

I had AN surgery at MGH in April 2015. Absolutely, 100% recommend going to MGH. Don't go to any other Boston Hospital - MGH is #1 in the country and they do 4+ AN surgeries per week. The Barker/McKenna team is amazing. They've done over 700 together as a team, have never lost a patient, and are so so so so professional.  Dr. Lee the ENT from MEII is also great, I didn't have him, but I met with him, and his track record is amazing as well. In fact, he responded to me when Dr. McKenna was unavailable one time. It's amazing what MEII and MGH do for us.

I am completely back to normal life, and was so 3 months after surgery. I had a big 3cm tumor and came out of surgery with no facial issues at all. I did lose my hearing in the AN ear but that is pretty much guaranteed with a tumor that big. MGH is #1. Don't stray from it. And if you need surgery, 100% use McKenna and Barker. Barker has less of a bedside manner than McKenna, but is a really funny/nice/caring guy.  Of course there are no guarantees with surgery, but their history together as a surgical team and their stats are top notch. And McKenna's fellow Dr. Remenschneider is great too- really really really can't say enough good things.