ANA Discussion Forum
Useful Information => Physicians => Topic started by: rachelnyc on December 01, 2012, 10:30:03 pm
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Dear Group,
My name is Rachel. Im 33 yo with a 3mo daughter. I was diagnosed with a 2cm cranial AN on my left side just a few days ago. Its been a very difficult past few days to say the least. Finding the right surgeons as well as multimodal support (like this site) is what is important to me now. My family and I have done hours of research and networking. We have appts on Monday with Golfinos/Roland at NYU and then Sisti at Columbia. Have any of you used either? If so, would any of you be comfortable sending me their recommendation and why. I am looking for the best possible outcome (who isnt). I want the triple play!!! no tumor, no deafness, and no facial paralysis. Im praying hard.
If any of you have similar stories or have worked with these surgeons, I would be most grateful to hear from you.
Best regards,
Rachel
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You and I are very similar. I saw both doctors and sounds like we have similar issues. I decided to stick with Dr. Roland/Golfinos. Would you like to further discuss on the phone? I'm 49.. never been sick. This is just crazy
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Dear Rachel,
I just sent you a PM on why I prefer Dr. Sisti over Dr. Golfinos. I have interviewed many brain docs, 14 to be exact! Dr. Sisti makes you feel at ease, doesn't talk at you and tells it like it is.
All the best this Christmas!
Mike
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Rachel...I went to those doctors and had surgery with Doctors Roland and Golfinos. Dr. Sisti recommended radiation for me. He also said he did not operate on tumors smaller than 2.5 cm. Now, my July MRI showed my tumor had grown, and, in October after Dr. Golfinos (who said I could do either radiation or surgery; Dr. Roland seemed to agree with me on surgery) got it out, he said it was bigger than they thought. I liked Roland and Golfinos-but/nd I wanted the thing out of my head if possible. My hearing was already pretty much gone in the an ear-especially, it eroded in the least 8 months before surgery so trans-lab was not a hard choice for me.
I am recovering pretty much as I was told I would. The first days after surgery were hard but I dare say I improve a little every day. I was told to research and then go with my gut (by members of this forum and also my local ENT) and I did and have no regrets. Every person's journey is unique and you will find your way. Once you make the decision on method of treatment, it will get easier.
Mil
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Hi - I saw Sisti and drs at Cornell who I ended up going with. I am the same age as you in great health prior. I went with dr. Boockvar and dr. Brown at Cornell. They were fantastic. Very thorough yet patient with me. I am almost 8wks post op and saved most my hearing, no paralysis and my balance is getting better. I went for a 2mile run today. Tumor removed 100%. Scan in feb to make sure no regrowth. Feel free to message me to get my number and speak with me. I also saw dr. Selesnick and Gutin at Sloan memorial as well as two out state phone consults. Never felt need to get another opinion at nyu.
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Thanks for all of your thoughts and advice.
I just spent, what felt like the longest day of my life, interviewing Golfinos/NYU and Sisti/Columbia. They couldnt be more different in their approach. Golfinos recommeded microsurgery- the retrosigmoid approach. He said my tumor is so far in my ear canal that hearing preservation is highly unlikley (like 20%). This breaks my heart.
I went to Dr Sisti at Columbia and he recommended the gamma knife radiation. He stated he doesnt operate on tumors of my size and under. He said that I would be an excellent candidate for radiosurgery. He certainly is confident about the product he sells and discouraged surgery "becuase who wants to go to the OR and have weeks and weeks of recovery". When I asked him about the risks associated with radiation he stated none of his pre-selected GK patients have malignant tumors due to the fact he carefully selects who is an appropriate candidate. He also said he is retiring in 5 years and that someone else will fill his shoes and carry his patients through their life span. It was nice to hear that there is an alternative to invasive surgery but man, he certainly likes to hear himself speak.
Im at a crossroads as to what and who to choose. I overnighted my records and MRI to the head of neurosurgery at the MAYO clinic (due to personal connections) and Im hoping to hear his feedback soon. Im leaning towards surgery becuase I want this out and I dont want to have to manage this every year and worry about it. I want to spend my energy expanding my family and leading as normal a life as possible. I feel like i just got hit with a big dirty garbage truck.
My MRI impression states: "large enhancing acoustic neuroma with intracanalicular and cerebellopontine angle components with mild mass effect on the middle cerebellar peduncle and overall measures up to 1.3x2.0x1.9 cm."
If any of you have something similar to my results, would you mind being in touch?
Me, my friends, and family are amateurs...
Thanks to all.
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Rachel -
these 3 doctors all have excellent reputations. Personally I don't think you can go wrong with any of them.
Just wanted to note that 99.9% of ANs are benign - and radiation doesn't change that. Also surgery doesn't always take "weeks and weeks" of recovery. While 6 weeks recovery is the "norm" lots of us have had different experiences. For example, I was back to work part-time 2 1/2 weeks post op and full-time 4 weeks post op.
Treatment is a personal choice and you need to decide whether surgery or radiation is best for YOU based on what the doctors are telling you.
Follow your heart, your head, and your gut - and make sure whichever doctor you choose you have 100% faith, trust, and confidence in him.
Best,
Jan
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Rachel
Let's talk in person. I'm in the same boat and saw the same doctors. I am now awaiting to hear what House Clinic will tell me and finalize my decision hopefully. I work in the city and can meet with you if you like.
Diana: I removed your phone number for security purposes. Please send Rachel a PM with your number as I'm sure she might want to meet with you.
Jim
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I had a 2.5 AN and saw Roland/Golfinos at NYU and also went to Kondolikia (sp) in Pittsburgh. Insurance coverage and family responsibilities played a role in my decision and I ended up having gamma knife at NYU. I am thrilled that I did. My tumor is shrinking and my balance is back to normal. My facial numbness is also gone! I know they are waiting for a new machine, but with AN you do have time to wait. Surgery is serious, and brain surgery particularly so. Meet with everyone and do your research on what doctors would do in your situation. What ever you choose, this will not be the worst thing that will happen to you in life! Like everyone else on this forum, you will overcome. I would be happy to talk and live in NYC.
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Hi..Have you looked into CK? My AN was 2.5 cm and was told I was a good candidate for CyberKnife. Which I did 2 years ago at Winthrop Hospital in Mineola, NY. The doctor to see is Dr. Haas! You can google the hospital and Dr. Haas' info comes up. Take care, Joan
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I have been a W+W patient of Dr. Roland + Golfinos for 6 years now. I have great confidence in the ability of them in all respects. As far as surgery they probably have done at least 2 a week since I have known them which I know qualifies them experience wise. I have never heard a bad word about them. Best wishes, Mickey
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Thanks all.
Ive made my decision. Im having surgery with GOlfinos and ROland at NYU Jan 9. Im having the retrosigmoid approach. I have been inadvertingly watching and waiting for 5 years and have had 4 terrible episodes that have been extremely life distrupting. I want this behind me and feel Ive made the right choice for me. Im 33 yo and do not want to take any chances with radiation.
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Best wishes, Rachel. We'll be praying for you. Mil
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Hi Rachel,
I tried reaching you last week. I want to wish you all the best. You have a lot going on with your new position and your baby. If you need to talk, just call or email me.
Stay strong !!
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Good luck and keep us posted. I plan on doing the surgery in June. Millie how are you recovering?
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I have been recovering slowly-it is taking time, and I was told to be patient, and I certainly am better than I was right after surgery. I have been trying to post faithfully under Trans-lab October 17th but you can probably just hit my name and read whatever I have posted.
It is harder than I thought, but my droop is better, my facial muscles are coming back, I still have fullheadedness and get wonky in a store after a couple hours out, and I am SSD but it only bothers me in groups and the doctor said when I am more healed, we will talk about hearing devices. Am not driving. Using lubricant and ointment (Refresh)
I am reading all the posts tonight and feel more hopeful that I am only two months out, and there is more progress to be made.
(I sometimes get depressed)Mil
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Thanks all.
Ive made my decision. Im having surgery with GOlfinos and ROland at NYU Jan 9. Im having the retrosigmoid approach. I have been inadvertingly watching and waiting for 5 years and have had 4 terrible episodes that have been extremely life distrupting. I want this behind me and feel Ive made the right choice for me. Im 33 yo and do not want to take any chances with radiation.
I'll say great choice...I had my operation on 1/10/2007 with Golfinos and Roland. Tell them both I said hello and to take good care of you :)
Best of luck.
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(I sometimes get depressed)Mil
Millie -
recovery takes time, and patience - although often very hard to find - is key :) Some days are two steps forward and one step back but it sounds like you are making progress and that's a good thing. Hang in there!!
Depression is a very common "side-effect" of AN surgery. Don't hesitate to seek professional help.
Best,
Jan
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Thanks Jan. I hear you. Mil
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Hi Rachel,
I've just been catching up on new posts and saw that you are having retrosigmoid surgery with Drs. Roland and Golfinos very soon. They did the same surgery for me in July and I was very pleased with every aspect. It wasn't easy but it wasn't terrible either. I felt I was in very capable hands at all times. Best of luck to you and know that you've made a great choice of treatment. Let us know how you're doing. Shirley
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Rachel,
Your surgery was January 9th...I have been thinking of you so much lately...I hope you are doing well...hang in there it will get better...Millie
P.S. I saw Dr. Roland on the 7th for my follow up appointment. I think you are in good hands. Prayers. Millie
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Rachel,
Let us know how you are.
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Has anyone heard from Rachel. I've been thinking of her this weekend.
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Hi guys
Can't believe I'm even online but needed some distraction. Came home yesterday after 5 days at NYu. They got the whole tumor out, but lost my left hearing. Facial weakness pretty significant- Golfinos said up to a yr for full recovery.
I'm grateful this is b
Rhine me but I'm so useless and hav never faced anything like this in my life. Recovery isn't a joke. How did others pass the time? It pains me very minute of every day that I can't pick up ad play w my 5 mo daughter...
Thanks the support- I know thIs group knows their stuff.
R
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Hi Rachel-so happy they got the tumor out. I'm sorry for your other side effects- hopefully the facial weakness will come back soon. Just keep a positive attitude. Get up and move when you can. Even if its just to walk around your apartment. Are you having any vertigo? I forced myself to read and do word puzzles to get my eyes and mind working. It was tough and tiring but think it helped my recovery. Also don't be afraid to rest... A lot. Take it easy and let your family help you. I know you want to play with your baby but you will have plenty of time for that. Hope the pain and headaches are not too ad and subsiding. For me once that passed I was a whole lot better mentally. If you need anything we are here.
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Hi Rachel:
I'm glad you are out of the woods. Are you experiencing any facial dropping as well. Not sure what facial weakness means. I know the recovery isn't easy and i will be faced with that as well. How long as your surgery?
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Hi Rachel,
I'm so happy to hear all went well. I am sorry to hear about the hearing loss, and the facial weakness. Hopefully the facial weakness is just temporary and as you continue to heal the muscle nerves will come back. Make sure you get outside and walk around. If you need to talk just call.
All the best,
Bob
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Hi Rachel,
Hey, I think you're doing great being able to post a message so soon after surgery! I hope you have someone there helping you with your daughter. Remember to rest as much as possible and don't worry about being useless--little by little you'll start doing everything you did before. Be patient with yourself.
Shirley
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Hi Rachel! My prayers for a speedy recovery... Best wishes, Mickey
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Rachel-
I too am praying for your good strong recovery. It is a tough recovery but it will get better...little increments of improvement every day. The nerves take a while to heal, I am told. I hope you have help at home.
My facial droop is better-it is three months today for me. I am now left SSD too. Using drops for my eye.
Look around at everything-the t.v. too-and walk as you can.
Hang in there.
It does get better.
Mil
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Passing time was tough in the beginning. I prayed a lot and squinted at the t.v. with one eye. Slowly imperceptively the healing occurs. Then you might be able to read the papers a little. Rest and let yourself nap whenever you are tired. I hope you have someone to help you.
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Thanks all
Yes I have great help for my daughter and lots of support from family and friends.
I'm tired a lot and my facial weakness was totally unexpected ( my surgeons said that That nerve wouldn't be affected since the tumor was in another direction). When they went in, it was another story. So I'm coping with e loss of my left side hearing, the facial weakness, and I'm pretty unsteady. My family pushes me to walk every day but I get pretty winded. I have to use drops in my left eye all they time to prevent dryness and I tape it shut before bed.
I want to return to myself so bad and though I realize time is the only thing that will help I can't help but wonder if there are certain things I can do( exercise or diet wise) I can do to repair my nerves.
Also the tightness on my skull- does that go away?
Last night I had my young neice and nephews over. It was so loud and difficult for me. My fullness and tinnitus semed to get worse. I wonder if i will always feel like this in the presence of many people And loudd noise or was it just because I'm in my early recovery?
R
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I think it is VERY early in your recovery. I can remember I was so happy my grandkids came to visit the week I came home (they are 3,5,5, and 6) but I found I really relished quiet. I t really was such an effort to converse and interact and walk about to the den and the kitchen table -especially with the eye and the full head that is still pretty numb. And then our faces are crooked (mine is 80 per cent back now) Of course everyone encourages you to walk and eat and nap, but listen to your body and when tired or maxed out mentally go to bed. (The week after I came home Hurricane Sandy struck and we were without power! But we survived!!)
I am three months out (I am also 65 but in good shape) and just getting around to driving ...when in a store, I start to feel tired-I think it is the fullheadedness, or "weight" or "wonkiness" or pressure but I hope that gets better. I have been told I will get better and better. Like you, the doctors thought one thing going in, and then when they get in there, they can really see what is going on. But they said I would get better and I am. It is definitely better than one or two months ago.
Please give yourself time and nurture yourself.
Best wishes.
Mil
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Dear Rachel,
You chose your Docs well I see! Good for you. It helps to have patience though your facial function as long as they didn't cut it should return shortly. Although, it happened in 2004 for me (debulking surgery) my facial function returned in approximately 3 weeks, as I remember.
Do as much as you feel comfortable doing, take it easy on yourself. Remember, you just had brain surgery. Short periods of activity with plenty of naps work best.
If you build up little by little your activity level you will find that you don't get tired as easily, consequently, you'll nap less.
Take care!
Mike
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Rachel,
It's gets better sweetie - hang in there. Take walks, and take rest, they go hand in hand. All the fuzzy stuff will dissipate, but it does take time.
Regards,
Bob
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Rachel
Hang in there. Of all I have read, recovery takes time. That's what i would need to understand as well.
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Thanks everyone
I'm walking and reminding myself of all your advice: patience and time. :)
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Dear Rachel,
As Jan says you should let your heart,your head and your gut make your decisions for you. That is what should guide everyone when making an initial choice of doctor ( be it surgeon or GP). That is what drives quality, essentially! Good choice by the way! Dr. Golfinos was in my top 3 contenders!
Mike
PS a little help from God as well!
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For those who used Roland/Golfinos, how did it go? Any problems? Did they have to peel any off the facial nerve? Was it sticky? Did any of you have hearing saved with retrosigmoid? Did they get it all out?
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Hi, yes, I had retrosigmoid Surgery with Drs.Roland and Golfinos in July. They were able to save almost all my hearing. However, they did need to cut the vestibular nerve since it was already badly damaged. Just had my six month check-up and everything looks good. My AN was not the sticky type so that helped, and it was quite small. I have been very pleased with the doctors and highly recommend them.
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Mine was sticky and adhering to some nerve(I guess facial but I am forgetting now-I need to read the surgical report ) but as the doctor picked at it it came up pretty nicely my husband says. I was told I should get my face back and most of it is back, just a little crooked smile and the eye which doesn't blink quite in sync with the other-still using drops... Trans lab left me deaf in the an ear-I went in with 40 per cent hearing, and after the surgery I noticed the difference. I am acclimating. I do feel better than four months ago(surgery was 10/17.) The first days and weeks after surgery were more challenging than I expected. Doctors said they got it all and I have an MRI in October. I think I had excellent doctors.
I am hopeful and feel fortunate.
Hope that helps. Mil