Hurt

[kat]

Dear Squirellee

I was dumbfounded reading about your terrible AN journey ! My heart goes out to you . I  really admire your determination to keep on going against all the odds . I hope that finally coming out with your frustrations on this site has given you some relief . You are with friends on this site who will understand what you are going through.  

Best regards Kat

[Pat]

Tammy,
  I`m a "newbie" here too, may I add to what has already been said by urging you to stay in touch and continue the posts?
  Isn`t it comforting to know that we are not alone , and that we can support / pray for one another?
  Have you discussed your feelings with your pastor? If not you should................
Pat

[Sue]

Tammy,

I'm surprised you didn't file a grievance, charges or lawsuit because of what  you have gone through.  My heart goes out to you.

Sue in Vancouver WA USA

[TP]

Tammy, the blessing here is you are alive! The surgery and the complications you experience and live with daily will help someone that you may never know. What you've been thru no one should have to go thru but it is over and it is ok to let folks around you help you. Do not beat yourself up about not getting 2nd or 3rd opinion! It's over and right now you need positive and comforting  support during this time.

First of all, it sounds like you are involved in your church and many count on you, that is a blessing. However -  your health and well being needs to come first now. Please find a new Dr and get your yearly MRI. Find a Dr who will listen and help you. All the things you are involved in at church someone can help you out and allow you to take time and heal.

This forum is an excellent support system and a wealth of knowledge. Please continue to post and share your concerns and issues. Majority of us on this forum have or had an AN and have had to deal with healing, disabilities, Dr's, MRIs, insurance, family, work and loneliness. I have learned so much and realized I am not alone.

My prayers are with you! God bless!   

[tripsplus6]

Tammy,
   Oh yes, I remember Dr. Kung. Small world.  He was still a neurosurgical resident at Boston Children's Hospital and on the team of neurosurgeons treating a young family member, many years ago.  We were not impressed then, horrified now at this story.  I do also remembering trying to contact him with followup questions after he had moved to Elmyra, but he never returned any calls.  Please do find a competent and caring physician for followup.  Glad you are on this board, everyone is so very pro-active with their medical care and so knowledgeable, kind, and empathetic.  Good luck and keep us all informed.        Terri

[sgerrard]

  Tammy, you are quite a remarkable person. I can't imagine going through all that, or even one tenth of all that. But you have managed to persevere and be a productive person, despite it all. It is really in the end an inspiring story, even with that grisly beginning.

  I hope you get a chance to pursue some or all of the medical treatments that could help with the facial nerve or the neck crater. Even more, I hope to hear from you here from time to time, whenever you feel the need to unload some of that burden. You are a real person, very much alive on the inside, and you matter a great deal to all of us.

All the best, Steve

[Betsy]

Hi Tammy,

I remember reading something awhile back about Arnot Ogden Hospital having trouble recruiting and keeping doctors.  Binghamton too; when I was considering surgery, I tried to find an experienced AN doctor in Binghamton (my mother and sister live near there), but couldn't find one.  I'm still pre-treatment so I can't speak from experience, but I do know that follow-up care is critical.  So far, I've been very impressed with Geisinger in Danville PA (south from Elmira, maybe 100 miles).  It's out in the country, but the facility is huge and there are doctors there who are experienced in treating AN patients.  Let me know if you'd like more info.  You shouldn't have to suffer.

I admire you for staying so active and involved, although it's obviously difficult for you.  It's hard to keep strong emotions inside; I'm glad you found this forum and shared your story with us.  Please post again whenever you want....you have friends here.

Betsy

[Obita]

I am bumping this up hoping someone can help squirrellee find a doctor in her area for follow up care.  Maybe Rochester or Buffalo NY?

Kathy

[linnilue]

There is a neurosurgeon in Albany, NY by the name of Dr. Timothy Lovely.  He operated on my best friend who had a huge (lemon size, frontal lobe) menengioma last December.  His office is near st. Peter's Hospital and that's whee he operates.  She was out of ICU in 24 hours never had one single setback and was back to work in 4 weeks.  Her only lingering issue is fatigue but even that isn't too bad.  She was very pleased with him and I know he operates on acoustics.  She was so lucky because he told her that she might have a very long recovery which she didn't.  It might be worth a consult.  I know I wouldn't hesitate to have a conversation with him.  Good Luck,  Holly

[Obita]

Tammy:

How about Cornell University?  That can't be too far from you.  I know I have seen this doctor mentioned
on the forum. http://www.cornellphysicians.com/samuelselesnick/index.html

Kathy