Newly Diagnosed and Overwhelmed

[GaryWNT]

I was diagnosed in Knoxville on July 6 and spoke with a neurologist. Radiation treatment was suggested and I decided to go for a second opinion at Vanderbilt. This past week I met with Dr. Kyle Weaver and Dr. George Wanna (separately). My AN is almost 2.5cm and has many cysts, so it seems radiation is not a viable option. I haven't made a decision yet, but I think I'll be doing Retrosigmoid/sub-occipital approach. I really liked both doctors and have a sense of trust in their abilities. I'll be making decisions over the next couple weeks.

Good luck with your journey!

[Janey]

Hi Pattib,
I too was diagnosed last fall with a left AN.  It is considered small, less than 1 cm, but I have
very little useful hearing left in the affected ear.  I had hoped to be on watch and wait for
the rest of my life, but my second MRI in May showed a bit of growth.  I am scheduled for
another MRI in September and my doctor said that if it grew at all I should consider treatment.
I have some slight balance issues, constant hissing in the ear, and the hearing loss.
Like you, I want to be ready with a decision about what sort of treatment would be best and I'm
leaning toward gamma knife.  I just turned 60, so our cases sound similar.  I wish you the best of
luck as you work through this decision.  God bless you!

[MG]

Pattib,

I agree with rupert. I have been on W&W for 3 years. My last MRI showed 4mm of growth. My hearing has deteriorated quite a lot. I am 65 and I have to have radiation of some sort sooner then later. If you want to save your hearing  you may want to have GK or whatever you choose while it is small. Do your research on it. Positive thoughts and prayers!

Good Luck,
MG

[Pattib]

Thank you all for each of your responses:

GaryWNT: Thank you for your comments.  I have heard some very good things about Dr Weaver.  Best of luck with whatever decision you make.

Janey: Yes, our cases do sound very similiar.  Right now I don't think I am leaning any particular way, just trying to look at each option and determine what I feel is right for me.  Best of luck to you as well in your decision making.

MG: Thank you for your comment.  I really do want to get as much info as possible so that whatever I decide and whatever the outcome I will at least know that I did all that I could do to inform myself before making the decision.  Best of luck in your journey as well.

[lark114]

I sent my info to House as well and it took almost a month for Dr. Slattery to call me.  Dr. Friedman at USC called me within a few days. 

Linda

[GaryWNT]

I've sent my MRI and diagnosis to both USC and House. I have great trust in the two doctors from Vanderbilt, but I thought it was worth the effort to send off the discs and ask for another opinion. I've been researching retrosigmoid surgery. It seems to be used less frequently than other treatments. My AN is 2.3x2.1. I have some hearing loss in the AN ear, tinitus, and very subtle balance issues. No headaches or other symptoms. However, the AN is pressing on the brain stem. It' so difficult knowing there's something in there causing this and wanting it out . . . but the after effects of the surgery are frightening!

[Pattib]

Thank you Linda for your comment.  I did receive a response from the House Clinic.  It took about 10 days to hear back from them.  I also sent the MRI to Dr. Friedman and received a response back from him in about 3 days.

GaryWNT with dealing  with this AN thing it is extremely important to have great faith in your doctor's for sure.  For me I am looking to get as much info that I can which includes opinions of other professionals in this field whether it be surgery or radiation.  The after effects of surgery are as you said frightening to say the least but I'm hoping with the selection of what I feel would be the right procedure for me combined with the right doctors that some of the fright can be lessened somewhat.  At least that is what I'm hoping for.  I think that you did the right thing by sending your disc to the House and USC.  I don't feel it hurts to get another opinion for sure.

[mac84]

Patti,

In re your question about Vandy and GK experience, I asked that exact question to Rivas and Thompson. If I remember correctly both said that they do around 30-40 per year.  I could be remembering that wrong but the takeaway for me was that if I had the GK I was going to go elsewhere.....not near the experience that I was looking for. They have a clear preference for handling with surgery. If I do the GK then I'm going to UPMC and Dr. Lunsford.

[rupert]

Patti,

In re your question about Vandy and GK experience, I asked that exact question to Rivas and Thompson. If I remember correctly both said that they do around 30-40 per year.  I could be remembering that wrong but the takeaway for me was that if I had the GK I was going to go elsewhere.....not near the experience that I was looking for. They have a clear preference for handling with surgery. If I do the GK then I'm going to UPMC and Dr. Lunsford.

Where's the like button. 

[GaryWNT]

I sent my MRI to House Clinic on Monday via overnight . . . got a call last evening (Tuesday) from Dr. Luxford. I had a very good conversation with him and he offered a call-back if I had further questions. I am amazed and impressed with the lightening fast response to my request for a consultation!

[Pattib]

MG

I appreciate your comments.  I certainly understand the importance of wanting to do something about the AN while it is still considered small enough.  It's that "what to do" thing both with when is the right time and what is the right method that I am struggling with and trying to get as much info as I can.

Mac84

Thank you.  I believe the patient coordinator had told me when I was there for the office visits that she would be able to provide some information for me in terms of how many AN's per year had been done and what was the general outcome (issues after surgery).  So I believe I'll see if she can provide me the number of radiation treatments that they do annually along with a general outcome.  I too would want to feel that i have chosen the right place and Dr's for radiation if that's where this goes.

Rupert

I tried to find the like button but I couldn't find it either!

GaryWNT

Yes I too have found it surprising how both the House & USC  have responded and have been willing to take the time and speak with me on my issues.  It took about 10 days for the House to get back to me and 3 days for USC, but just the thought that they are willing to review and discuss the MRI with me I find amazing in it's own.

[Janey]

I also sent my information to USC.  Dr. Friedman called me this afternoon!  It was comforting to
know that his opinion on my situation matched what my local physician advises.  I too find it amazing
that a well-known physician across the country would consult with me, answer questions, and
offer to give me his opinion again after my next MRI.  He was awesome, and without this website
I would not even have known such a consult was possible.

[Pattib]

Janey I'm glad to hear that Dr Friedman was of the same opinion as your local doctor.  Certainly gives one a sense of confidence in how one is handling their issues.   I am very grateful for finding  this site.  It has provided so much information as well as support which is so needed.