Wait time for House consults?

[LolaBe77]

Hi everyone - newly diagnosed with a 1cm AN and going through the process of getting second, third, fourth opinions. I've read a TON on these boards and it's been so helpful.

I have my first appointment with a neurologist on Friday, who has already indicated that he thinks Gamma Knife would be the way to go. Makes me a little nervous since I'm "only" 39. 

I'm seeing a neurotologist in about 2 weeks who is going to do a bunch of balance testing since I've been having dizziness off and on. I'm leaning towards waiting a bit longer and seeing my 6 month and 12 month scans before deciding on treatment, just to see if this thing is really growing. But I'm concerned about the balance issues and might feel the need to move more quickly in hope that I could resolve some of that.

I also sent my scans and hearing tests to House a few weeks ago based on the suggestions (and amazing things) I've read about them here. Curious to know how long I should expect to wait to hear from them. I'm guessing things might move slowly in the summer with vacations and such. Hard to be patient when there is so much info coming at you though!

[michellef08]

I'm pretty sure I heard back from both surgeons separately within about 7 days. (Estimating as it was 3 years ago). However - you are right, it may take more time if they are taking time off for the 4th of July. Good luck!

[gedavis]

I called them the day we got the news of my husband's AN and they saw us immediately.  They had 3 openings the following day they offered. We are progressing very well with them.  They seem very receptive to our questions, concerns, etc.   The waiting room is buzzing but everyone seem in and out at sufficient pacing.  I would say call them and chat with them.  Tell them you are concerned and would like to speak to someone.  Good Luck.

[LolaBe77]

Thank you - gave them a call and confirmed they got everything. Going to have my consult tomorrow night!

[Blw]

You are doing it correctly. Hardest part is deciding. I took 3 months for a similar sized tumor. Get as many opinions as you can stand. I went out to Stanford, contacted Pittsburgh, and ultimately settled on UVA for gamma knife. I wanted no part of surgery. If you do your due diligence and make a decision, stick with it and be confident it was the right one for you. Depending on insurance, go to the best place you can find depending on what method you choose. Personally, I'm not a fan of watch and wait. If you are symptomatic, the longer it grows the more damage it can do and the less likely you are to get that function back. Additionally, it is just easier treating a smaller tumor and you are less likely to have regrowth or complications. Particularly with radiation, they calculate the dose you get depening on the size, and less is good. For surgery, I think they have a better view of the nerves with a smaller tumor as well.

[ANGuy]

You are doing it correctly. Hardest part is deciding. I took 3 months for a similar sized tumor. Get as many opinions as you can stand. I went out to Stanford, contacted Pittsburgh, and ultimately settled on UVA for gamma knife. I wanted no part of surgery. If you do your due diligence and make a decision, stick with it and be confident it was the right one for you. Depending on insurance, go to the best place you can find depending on what method you choose. Personally, I'm not a fan of watch and wait. If you are symptomatic, the longer it grows the more damage it can do and the less likely you are to get that function back. Additionally, it is just easier treating a smaller tumor and you are less likely to have regrowth or complications. Particularly with radiation, they calculate the dose you get depening on the size, and less is good. For surgery, I think they have a better view of the nerves with a smaller tumor as well.

Since you went off topic and decided to editorialize regarding observation, I figured I'd point out something.  Watch and wait is not sitting around while a tumor grows and becomes more of a problem.  Mine hasn't grown in the 2+ years I've been aware of it and watching it.  With all of the common degradation of quality of life that occurs with treatment, it is misguided to suggest that the "act now" approach is somehow a sure bet.

[gedavis]

Thank you - gave them a call and confirmed they got everything. Going to have my consult tomorrow night!

How did the consult go?

[Blw]

The best response I've heard to that is "what are you waiting for". The damage accumulates and it is unlikely that you are going to recover the lost hearing. True, if you are in your 20's it may be something to consider or if the tumor were found by accident, but I'm not sure what you get from waiting, with exceptions for a tumor that never grows. You may hear better during the wait period vs acting immediately, but there is zero evidence that treating a larger tumor has a better outcome than treating a smaller one, and the worst outcome is having to retreat. Bigger tumors require more radiation or harder surgeries. How was my comment off topic? Looks pretty relevant to me seeing that W&W is one of three treatment options.

[Director]

I am going to ask everyone to please keep the tone on the Forum civil and polite.
Thank you
Allison
CEO, ANA

[mcrue]

In the spirit of this forum: God bless America! Happy 4th of July everyone.

[Blw]

How's that?

[yuwenli]

I sent my info to House about 10 days ago, they are calling me tonight.  Good Lock.

[oh, now what]

I am post-op now, but can tell you emails worked for me for some contacts with one of my surgeons. I am in the Central time zone, two hours earlier than California. I start my day early and am pretty worthless by 6 or 7 p.m. our time (4 or 5 p.m. their time), always received a timely reply. For some questions this is great since a family/surgery/office appt./presentation schedule won't stop an answer coming to you at what might be an unusual time and you can open it on your time, and go over it.

I too was "observation," and had regular MRI's with reports written each time by the same doc at a world-class clinic. There was little growth and I hoped to be one of the older people who would never have to go through any treatment for it, even if the tumor continued to destroy my hearing, which it did. I sent my MRI's to House, and Dr. Schwartz told me my tumor had grown to within one mm of my brainstem -- better to have your favorite AN expert look at your MRI. These buggers are mean and nasty, and the MRI's can't be as good as direct observation.

[gedavis]

We are home from his surgery. How are you progressing?

[WhatnotGems]

I sent my information to the House Clinic for a second opinion on August 10, 2016 Priority Mail. I received a call from Eric P. Wilkinson, MD FACS on August 18, 2016. After speaking with Dr Wilkinson I am watching and waiting. My understanding in the right ear is now 30%, If they had read and of my previous MRI's correctly, they may have been able to save my hearing and the understanding was 80% last summer.

I have had annual Brain MRI's or 11 years. It took changing to the VA healthcare for someone to correctly read my MRIs.
Dr Kyle Allen is the doctor I have seen in Tampa.