My 22 year old son was newly diagnosed

[S. Robin]

My son has a small AN (8.3mm). He has lost his hearing in his left ear. We have seen Dr. Babu at the Michigan Ear Institute. We have also talked with a Dr. at the House Clinic. I am planning to send his records to Dr. Friedman at USC.

Dr. Babu and House have both recommended translab surgery. I want to trust Dr. Babu because I hate the idea of my son having to recover in a hotel room and not at home. I am also concerned about complications down the line and where to go if they occur. If he gets a CSF leak a month after surgery, for example,  and we are back home in Michigan I would not want to have to put him on a plane back to CA.

I need to hear from people that have dealt with Dr. Babu and the Michigan Ear Institute. Dr. Babu told us that he does 40 of these surgeries every year.
He has a lot of experience. Please let me know about positives or negatives with Dr. Babu and the MEI.
(I saw Jake's video on You Tube speaking highly of Dr. Babu, he had good results)   

[Citiview]

I don't have information about Dr. Babu but here are some links to help facilitate the process of asking the appropriate questions.

The links are from the ANA website and might be easily overlooked. The first one was updated on Aug. 1st. It's a list of questions to ask your doctor.
The second one is an updated article by Dr. Friedman about being newly diagnosed and feeling overwhelmed with the research process. Both are excellent resources.
It's important to get statistics from your doctor regarding the surgical outcomes. You have to ask very specific questions.
It's better to take your time than to end up with complications. There can be tough complications even at the best institutions.
Sorry that your son has already lost his hearing. That's a tough break for a 22 year old.

I know what you mean about traveling. It's a whole process in and of itself. I would rather be released from the hospital and go straight home to my own couch and my own bed. The outcome of the surgery is the most important thing, regardless of the issue of traveling.

https://www.anausa.org/pretreatment/questions-for-your-physician

https://www.anausa.org/component/content/article?layout=edit&id=615

[UpstateNY]

S. Robin,

I don't have any info on Dr. Badu, but I would highly recommend you go where your son will get the best treatment and results, even if that means staying away from home for a couple of weeks.  Although it may be inconvenient and not as comfortable, the result of the surgery will impact the rest of your son's life.

If you do travel for treatment, it would be important to line up a local ENT to take care of any complications that occurred once home.  This way there is no need to travel again.  This is exactly what I had done and my local ENT had no issue with it.

Hopefully, others will comment on their experience with Dr. Badu.   

[v357139]

I do not know Dr Babu.  40/year is pretty good, although the very top do more.  You might ask him how many he has done overall, not just his current per year.  Another way to find about Dr Babu is to search for his name using the search on the upper right corner.  It will generate all the posts with his name.  House is top notch and Friedman is also.  Good to ask each doctor about their track record also (most don't give it, but some do), and chances for facial paralysis under their care.

fyi, I did travel to House from NY with no issues.  The Seton visitor center was great - quiet and clean.  And you have the camaraderie of fellow AN patients, which was wonderful.  The whole stay out there is generally 10 days, including 3-4 in hospital.  Then 6 weeks at home.

The vast majority of CSF leaks occur right after surgery in the hospital.  That is why they keep you in CA for a few days to a week after you get out of the hospital, to make sure there is no issue with CSF.  This protocol translates to a very, very low incidence of CSF leaks after leaving CA.  Not zero, but very, very, very, very low.

Best of luck and let us know what you decide.

[v357139]

I found 16 posts by searching Babu.  Let me know if you have any issues finding them.

[S. Robin]

Thank you so much for the replies to my post. I am thankful that my son's tumor is small and we have time to consider the options. From what I read I think the doctor we choose can really have an effect on the outcome.

[S. Robin]

v357139, I can't find the 16 posts about Dr Babu when I search the ANA. Can you give me some help?

[S. Robin]

I'm hoping to catch up with jtwarrin5. I know he went to Dr. Babu.

[UpstateNY]

To find the posts on Dr. Babu, go to the link below (which is the main page for this forum) and search for "Babu" in the Search field.

http://www.anausa.org/smf/index.php

[S. Robin]

thanks upstateny, I found the links and have sent them a PM

[S. Robin]

Thank you so much to Ewchisek, and JTwarrin5 for your encouraging private messages. You have been so kind and helpful!

[Kathleen_Mc]

Is the only option being presented translab surgery ? I asked because his tumor is small and even though he has already lost his hearing there is so much more to loose with surgery (verses gamma knife).
I was 23 when I had my first surgery, lost the hearing yes but also so much more (facial nerve/balance nerve) not to mention the fact recovery time from the surgery itself.Personally I didn't have any options but hey if there is options they should be considered.
Kathleen

[S. Robin]

Kathleen_Mc,

Three Neurologist have all agreed that radiation should not be an option for Jon because he is so young. The House Clinic said, "he is too young to carry the burden of radiation" around in his body for years to come. That being said, nerve damage is our biggest concern with surgery. I'm told that translab surgery (compared to the other micro surgery options) offers the least risk to the important cranial nerve structures. If he had his hearing we would look at options to preserve hearing. But his hearing is already gone.

When we first learned about Jon's tumor we were hoping that radiation would be the answer.  It is clearly the least invasive. We are so nervous about it all. We want to make the right decision. I wish it was a viable option.

One minute I think we should leave it in there and wait to see if it grows. The next I think we need to go ahead with the surgery and get it out. He will never be stronger and healthier than he is now to go through it. (Everyone tells us that eventually the tumor will grow and have to come out.)
Jon proposed to his girlfriend a few days ago. They are excited to make plans to start a life together. If we wait, which no Dr. has advised, and he graduates from college, gets a full-time job, gets married and starts a family, his life will be so much more complicated if he needs to have it out then because it has grown and started to cause more problems.

We are so torn, it is such a big decision, to the doctors it is straight forward and easy, they all agree he needs to have it out with translab surgery. But they are not the ones dealing with the aftermath.

Thank you for sharing your concerns. Our faith is so important to us and we are praying and learning as much as we can as we proceed carefully through the process.

[v357139]

Robin,
It is a difficult decision, no doubt.  I went almost a year before I could decide and had a lot of anxiety. So I know how you feel, especially since this is your son.  Please keep in mind that with a very experienced surgical team, he has a great chance.  That is all you can ask.  I had a 3.5cm removed via translab and no permanent issues.  There are many more good outcomes than bad.

How does your son feel about it all?
Rich

[mcrue]

Kathleen_Mc,

Three Neurologist have all agreed that radiation should not be an option for Jon because he is so young. The House Clinic said, "he is too young to carry the burden of radiation" around in his body for years to come. That being said, nerve damage is our biggest concern with surgery.

What does "too young to carry the burden of radiation" mean? Are they implying your son will develop cancer if he has radiation treatment?

Dr. Chang from Stanford has treated teenagers successfully according to posts on this board.

I agree with Kathleen_Mc, just because there are some of do well with microsurgery, there are also some of do not do well. It's a major surgery and the possible complications should never be minimized.

I think you owe it to your son, at a minimum, to consult with a few top radiation specialists in the USA in order to get a more balanced opinion. What do you have to lose at this point?

I would certainly contact as many radiation specialist throughout the country as possible to find out their opinion regarding age as a factor in the year 2016 of radiation treatment.

In a previous post, I listed some of the top places for radiosurgery. I would simply mail a copy of your most recent MRI and medical history for their free consultation over the phone.

Dr. Lunsford - Gamma Knife at UPMC Pittsburgh, PA
Dr. Chang - Cyber Knife at Stanford, CA
Dr. Kondziolka - New Jersey, Manhattan, New York
Dr. Sheehan - Univ. Virginia - Gamma Knife - UVA
Dr. Schwartz - House Ear Clinic -  Los Angeles, CA
Dr. Friedman - Keck Univ- California
Stephen Tatter and Michael Chan - Wake Forest University North Carolina - Gamma Knife
Clinton A. Medbery, III, M.D. Southwest Radiation Oncology - Oklahoma
And perhaps your local Gamma Knife and Cyber Knife specialists

Whatever decision you make, I wish you well in your journey. A fully informed decision is the best one you can make.