Author Topic: 1.7 CM in Bham, AL Any recommendations?  (Read 5395 times)

SC3440

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1.7 CM in Bham, AL Any recommendations?
« on: December 03, 2014, 09:30:31 am »
Considering surgery, but I'm totally confused. I read info on the surgery and lean that way, then read info on radiation and lean that way. Frankly, the thoughts of the possible after effects of the surgery have me terrified. I can't find real statistics on the post surgery long term effects.  Can someone in my area give me some concrete info on Drs. in my area for both kinds of treatment?  Thank you.

mac84

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #1 on: December 03, 2014, 02:13:41 pm »
Hi there...

I'm in Prattville and newly diagnosed as well. (Oct 2014) Spend a little more time on here and you'll learn a few things.

My AN is about the size of yours. I've been to the Acoustic Neuroma Center at Vanderbilt and had a consult with Dr. Rivas.  I'd suggest you do the same as they see about 300 AN patients per year and do both Surgery and Gamma Knife. The #'s they gave me were out of the 300 they see, about 100 surgeries, around 10-20 Gamma Knife and the rest are 'watch and wait'.

I am currently in the watch and wait....the reasoning from Rivas was why do something aggressive when we just found the tumor?  I am scheduled for another MRI in April of 2015. At that time we'll know if it is growing and by how much.

They tend toward the surgery for younger patients (I'm 48) because of the long-term unknown of the radiation and talked very positively about minimizing the side-effects of the surgery. I am just like you in that the risks seem to outweigh the benefits.

Alabama Jane on the Forum can give you some more detail as a couple others in Alabama. I believe that UAB sees a few patients as well.

I was thoroughly impressed with Vandy and the professionalism there.  It did a great deal to calm me down about the whole thing. The patient coordinator there takes care of everything and it is a smooth visit.  Call the Skull Base Center at Vandy and they'll handle from there.

email me if you need to! 

Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

SC3440

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #2 on: December 04, 2014, 10:26:25 am »
Thanks mac84. Frankly, I've not been able to find anything about ANs on the UAB/Kirkland Clinic websites.  I'm seeing a neurosurgeon and an otologist at St. Vincent's in Bham. They have done "many" (according to them) microsurgeries with good results. I'm seeing the otologist again tomorrow.  I still would like to explore the Cyber Knife.  I have a contact here in Bham that has had that performed. I have not spoken with her yet, but will. My neurosurgeon said that it was strictly my decision and that he would support my decision. But as he put it, "I'm a surgeon and I take things out."   At my age and fairly new diagnosis, I was banking on never having to make this decision. Little did I know...................
Thanks again and good luck to you.

annec

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #3 on: December 15, 2014, 10:50:14 pm »
Hi SC3440,

Welcome to the forum.  You have come to the right place for information and support.  I have not posted much on this site, but I have read a great deal and I am thankful for all I have learned on this forum.

I was diagnosed in August, 2013 (47 years old then) with a 3cm AN and was referred to Dr. Winfield Fisher (neurosurgeon) and Dr. Benjamin McGrew (otolaryngologist) at UAB by the ENT I saw in Opelika, AL.  These UAB doctors have worked together for many years. I seriously considered making an appointment at Vandy because of their reputation.  After talking with a patient of Dr. Fisher's (I was introduced by a mutual friend) and a few doctors in the Auburn-Opelika area (I am a pharmacist), I decided to go to UAB because of the high recommendations and because Birmingham is closer to home.  I have only good things to say about my experience with the doctors and the care I received at UAB.  I have seen Dr. Fisher for the most part. He has a wonderful, calming demeanor - which is a plus - but his high level of skill and knowledge are of more importance to me.

Many of us may have a similar journey, but no two are the same.  For me, surgery was the only rational choice. You have more than one option.  I don't know what I would have done if I were in your situation. The best thing you can do is explore both options with a well-trained neurosurgeon who is very knowledgeable about both microsurgical and radiation therapies.  Both choices have pros and cons.

I understand the difficulty in deciding which treatment option is best for you. I wish you well in your journey!  Please let us know how you are doing.

Anne



SC3440

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #4 on: December 16, 2014, 07:49:23 am »
Thanks Anne for your response.  Glad you are doing well.  I have an appt Dec 29 with another doctor here in Bham that has experience with both the surgery and the Cyber Knife.  There are other factors in my life that make me not want the surgery. Yes, I understand that the surgery would remove the tumor and the radiation won't, but all things considered at this time (I'm 68 yo) I'm just not sure I'm up to the "after surgery" issues. One of my doctors agrees and understands why I'm leaning towards the radiation if the new doctor determines I'm a good candidate for it.  One thing in my favor is the size of my tumor is still small enough for the radiation treatment.  I'll let you know what I decide to do. I had a response from another person here in AL that used the doctors you used and she highly recommends them. 

SC3440

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #5 on: January 03, 2015, 08:22:47 pm »
Hey Anne, I don't know if you know this yet or not, but quite by accident I think you and I have more connections in life than just our AN's.  I was telling a friend at church several weeks ago about my AN.  She told me that she thought a mutual friend of ours had a relative with the same condition.  Bottom line, through comparing a few details of what she knew and the info you gave me about your surgery, location, occupation and first name she said that has to be the same person.  Her name is Cathy Abbot and she is the ex-mother-in-law of your nephew Jay Jenkins.  Am I correct?  My son is a very good friend of Jay's and my son, Todd Cornelius, has been with Jay visiting his relatives in Auburn/Opelika.  Mainly, gone hunting with Jay.  Todd remembers meeting you and your husband. Jay was in Todd's wedding and was a pallbearer at my husband's funeral in Sept.  His recent death is one reason I'm opting for the Cyber Knife treatment of my tumor.  I went last week and was evaluated by another neurosurgeon that also has ties to the CK procedure.  All my doctors agreed that I'm not emotionally stable enough to undergo the surgery at this time.  Too close to Hubby's unexpected death and not having had time enough to grieve. I'm supposed to go soon and have the prep work done (CT scan and MRI) plus other logistics for having the CK.  BTW, my name is Sharon Cornelius, you only knew me as SC3440 on this forum.
I think this set of circumstances further validates the phrase "It's a small world."
I hope all these connections are legit and I'm not connecting the wrong dots..............  Let me know if I'm correct and best wishes to you and your healing.

arizonajack

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #6 on: January 04, 2015, 09:27:36 pm »
I have an appt Dec 29 with another doctor here in Bham that has experience with both the surgery and the Cyber Knife.  There are other factors in my life that make me not want the surgery. Yes, I understand that the surgery would remove the tumor and the radiation won't, but all things considered at this time (I'm 68 yo) I'm just not sure I'm up to the "after surgery" issues. One of my doctors agrees and understands why I'm leaning towards the radiation if the new doctor determines I'm a good candidate for it.  One thing in my favor is the size of my tumor is still small enough for the radiation treatment.  I'll let you know what I decide to do. I had a response from another person here in AL that used the doctors you used and she highly recommends them.

Hi Sharon,

I was 65 when diagnosed. I'm 68 now and will be two years post-Gamma Knife in a couple of weeks. You can read my GK story by clicking on the link at the bottom of my post and you can read other posts about my history by right clicking on my name and then clicking on show posts.

I carefully investigated both surgery and radiation and then opted for radiation for much the same reasons as you are considering it.

I am fortunate to live in Phoenix where the famous Barrow Neurological Center is located. BNC has an acoustic neuroma center where the surgeons do both surgery and radiation so I had unbiased discussions about both options whereas the neurosurgeon at House recommended surgery because that's what they sell there.

You haven't mentioned any of your symptoms. Symptoms play an important part in your decision.

I had loss of hearing on the AN side and significant balance issues. The hearing was almost completely gone by the time I was diagnosed and totally gone in that ear by the time I was treated. My balance issues resolved themselves almost completely within a short time after the Gamma Knife treatment and I have been without symptoms since then.

Continue to visit with us here. You'll get a lot of support and information.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

SC3440

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #7 on: January 04, 2015, 09:54:37 pm »
Thanks for your comments and support.  I'm glad you are doing well.  I still have hearing in my AN (left) ear with some "static" noises in that ear but it doesn't really bother me.  My balance is good and really don't have any other symptoms. The "new" doctor thinks I will still have my hearing after the Cyber Knife.  I saw him last week and he is getting the ball rolling on doing the radiation.  He talked like it will be soon.  Hopefully, I will have good results like yours.  Will post how it goes.  Just curious, how long after the procedure before an MRI was done?  I know I'll be anxious to know if the procedure was successful. 

annec

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #8 on: January 09, 2015, 03:32:58 pm »
Hi Sharon! 
Yes, it is indeed a small world and you have connected all the right dots.  Jay's mom called me a few days ago and asked if I was in contact with you, but I wasn't sure if you were the one on this forum. I am still amazed that we have these connections. I do remember Todd. I have a picture of him, Jay and Mike playing a game with our daughter years ago when she was about 8 years old. They were so precious to spend time with her. I am so sorry to hear of the passing of your husband. You are certainly dealing with an awful lot lately. I will ask if Jay will give you my phone number and you can contact me if you wish. I don't have any personal experience with Cyber Knife, but I can empathize with other aspects of this journey.

I am glad you have found a treatment option that works well for you and I wish you a successful treatment and speedy recovery!

Please do contact me if you want. I will listen with my good ear!

Anne

alabamajane

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #9 on: January 09, 2015, 06:36:59 pm »
Hi glad you are comfortable with your treatment decision and hope it goes well for you.
Just curious, who is the Dr you have chosen for the radiation?

I had surgery at UAB in 2011 for a 2.8 CM tumor with brain stem compression. I was not a candidate for radiation so I didn't have that option.
Best of luck to you and keep us updated as to when treatment is and how you do! Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

SC3440

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #10 on: January 09, 2015, 07:29:04 pm »
Hi, Jane, I'm using Dr. Dumas (radiation) and Dr. Swaid Swaid (neurosurgeon) at Brookwood.  I've seen Dr. Swaid and he is very comfortable with this decision.  He will still be involved with the radiation team.  I see Dr. Dumas on Jan 22 for office visit, CT scan and fitting for mesh mask.  On Jan 26 I will have MRI and we'll go from there.  Dr. Swaid said there would be 3 treatments (on consecutive days).  He's very optimistic of a good outcome, I certainly hope so.  I feel much better about having the radiation than the surgery with all things considered.  I'll post with updates.  Thanks for all the interest and concern.
Sharon

Gus

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Re: 1.7 CM in Bham, AL Any recommendations?
« Reply #11 on: January 14, 2015, 12:39:46 pm »
I went through the wait and watch, but when the tumor started growing, we'd already decided to do surgery.  For my mind-set, I needed the results to be concrete plus I had a 40% chance of saving my hearing, which they did!  I interviewed surgeons in OK, TX, CA and a radiologist in PA.  I went with Dr. Gidley and DeMonte at MD Anderson; they were awesome and had a good bedside manner.  It has be about 2.5 year and I have mild tinnitus, but have my hearing.  After surgery, I stayed down in Houston for 10 days, then back to Oklahoma.  I got my balance back during that time, but my TMJ  (pre-existing condition) ramped up; however I have the support of a great PT that has worked with me and got me on the road to recovery.  It is always scary and beyond stressful, but I'm glad I did it and now feel I can move on with my life.  By the way, I'd strongly recommend that anyone who goes through surgery, see a head/neck PT that has dealt with folks like us; makes a big difference.  Take care and my prayers and thoughts are with you.
8x 16 mm AN on left side
Diagnosed September 2010
Wait and Watch until MRI showed 2 mm growth in July 2012
Surgery on Aug. 30, 2012 via middle fossa at MD Anderson; results showed the tumor to be a benign meningioma instead of a AC.  Hearing was saved; mild Tinnitus; Feel Very Blessed

 


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