Barrow vs HEI & managing family post op

[triciaszczytowski]

Hi all,

I am new to this forum.  I was diagnosed with a 2.5cm AN in July 2012.  Surprisingly enough, my best friend had her 4+cm AN removed by Dr. Friedman at HEI. Because of her story, and because of HEI and Dr. Freidman's incredible reputation I am highly considering his team and leaning in the direction of HEI. 

However, I'm still trying to be proactive in my research and, therefore, I have a few questions about the other facilities I'm considering...

I'm also considering Barrow Institute in AZ with Dr. Spetzler. I would love to hear the experience of any AN patients that used the facility & surgical team there.  What kind of experience did you have with Barrow? would you recommend Barrow and Dr. Spetzler? Were the facilities accommodating to out of state patients and families? What was post-op like at Barrow? Just curious to hear others experiences with Barrow.

Additionally, I would love to hear from other young moms.  I am the mother of a very active and high energy 12 month old.  I am experiencing a lot of overwhelming feelings and fear as the tumor isn't really effecting my life right now.  My symptoms are minimal and mostly just facial numbness and loss of taste on my right side.  But I've come to understand I will lose hearing, and recovery can be tough, so i have a lot of anxiety about what post op with be like for my family.  My husband works a high pressure job, and won't likely be able to take a lot of time off post op....may be a week or two...What can their expectations be, and are there any recommendations on managing family and recovery? what will my recovery be like for them? We will have a lot of help from my parents and friends, but I am still scared about the unknown and would love to be as prepared as possible.

Thank you so much for your words of advice and for taking the time to respond. 
Tricia

[Palace]

Tricia:


If you decide on radiosurgery there are many of us, (such as myself) who took that route because, they are just close enough to the size of the tumor where they may go with that option.  I'm so very happy with my surgical team from Stanford and I was one of the highest success patients they have ever seen/treated.

I hope this helps!

More later when you decide on your treatment.

Welcome to the "club of friends."



Palace

[triciaszczytowski]

Thanks, Palace.  My treatment plan will be extraction of the tumor via surgery.  Radiation therapy is not recommended for my situation.

[sterry]

Tricia, welcome to the forum. It certainly is a wild ride from diagnoses to surgery to recovery. I went to HEI and think they are the cat's meow!  My thoughts on care after surgery, would be get some help at the house if you can. When I got home. I was pretty tired and slept a lot! I think you would need help with your child either at home or daycare. I had no interest in cooking! For about 6 weeks, make food ahead or something. My youngest was in school and once I was home my husband returned to work.  It took about 5 weeks to start driving. But it seems we all have our own recovery time, time is the key. I feel if you keep positive, take the time to heal, and have family and friends to cheer you on, it is amazing where we can be at a year.......2yrs...etc.
Best of everything to you!
Susie

[mindyandy]

Tricia
Wow what are the odds of you and your best friend? I have not met anyone yet in person that has an AN or had. Besides when I went to House. Anyways.....I understand wanting to be proactive. That is wonderful. You always want to shop around so to speak. Dr Friedman/Dr. Schwartz were my team and they are FABULOUS. As you already know. I did not have an infant but I did have 4 year old when I had surgery 5 months ago. His now 5 and has always had high energy. If you could have family around to help that is very helpful or at least ask them if they are able to help if you need it.

Keep us posted. Oh & uh welcome!

Mindy

[Jeff]

Tricia,
I have NF2 and have had 1 surgery by Dr Spetzler at Barrow and 3 at HEI by Dr Friedman. I am very busy (not a young mom, but an old dad with a toddler) ;-) I will try to contact you soon.
Jeff

[It is what it is]

Welcome Tricia,

I am also amazed that your friend had the same tumor!!!  Jeff sounds like a perfect person to talk with since he's had experience with both surgical teams.

Friedman and Schwartz at HEI were mine and they and St. Vincent's were wonderful.

I wish you peace once your decision is made. 

Karen

[millie]

Welcome Trisha-
I am waiting for sugery too-October 17th on a 1.4mmx.6mmx?
I am also concerned as to how long recovery will take.  I run around every day-driving to my ninety year old mom's for her errands(she lives independently and is coping with cancer-doing extremely well right now as it is not growing)have a husband four months out of major heart surgery and four little grandkids I wish I could see more of -and now they are starting school.
I really want to be back on my feet and driving about a month after the surgery which is October 17th. I need to be able to get ready for the holidays. I'd like to fly to the Caribbean February 8th for a major break from all this nonsense!  I better review the discharge papers the hospital has already sent me-maybe you might do likewise.
Best wishes.
Millie

[It is what it is]

I had middle fossa surgery 27 days ago and plan to return to work next week.  My husband drove us up to our ski mountain this weekend so we could gently hike on a mountain trail and I also practiced driving in the ski area parking lot.  It was easy.  Now I'll practice with traffic.  Some on this list have said that ease with driving came earlier than ease with walking balance. 

You have a busy life.  Recovery after surgery seems to be different for everyone and the complexity of one's life is also a factor.

My thoughts and caring are with both of you.

Karen

[millie]

Trisha-
It is great that your parents will be there to help with the baby.  Take advantage of that. Take the time  for strong steady recovery.  I think the stitches are out in seven days and the neurosurgeon sees you in two months.  Got to check my paperwork!
I myself am actually looking forward to this surgery now.  I am tired of the full-headedfeeling, the pressure in the head,  and the off balance feeling I get. I  look and act fine and my driving is fine. However,     I think the brain gets fatigued trying to compensate for whatever it recognizes has changed.  I am hopeful surgery reduces the symptoms.
From what I have been told, trans-lab is a pretty straightforward approach.  The hearing is sacrificed but there may be something new installed in the teeth called the Sonitus(?) which is worth googling.   
Also my husband had open heart surgery May 3 (four bypasses and the aortic valve replaced) and the neurosurgeon said my recovery would be  much easier than his. This made me feel very positive.
Prayers and best wishes,
Millie