mom of 23 yr old recently diagnosed AN

[leapyrtwins]

I'm not a doctor, and I'm not disputing Dr. Brackman because obviously he knows a lot more about ANs than I do, but I'm very surprised that he said surgery had better hearing outcomes than radiation.

I never really researched radiation enough to have come across any statistics related to this.  What kind of documentation is there to support this?  Does anyone know?  I'm mainly just curious.

Jan

[sgerrard]

Katherine,

Since it is so small, and you have been working hard, you should take a little rest, to recharge your batteries. There really is no hurry on this one.

- - - - - -

Meanwhile, being vigilant about keeping the radiation option in reasonable perspective, I did look up the article. Here is the link:

http://www.ncbi.nlm.nih.gov/pubmed/17704364

There are some relevant quotes from the abstract:

"Review of these 20 cases revealed 10 de novo secondary tumors, of which eight were malignant, with six being malignant gliomas."

So it is actually 8 malignant tumors, not 20, though there is report of malignant nerve sheath growth in some of the NF2 patients as well.

"The majority of the cases (14 of 20) involved AN, with most being in patients with neurofibromatosis-2 (NF2; 8 of 14), reflecting the large numbers and long-term use of radiotherapy for AN."

The 20 includes 8 NF2 cases, 6 regular ANs, and 6 other cases. Of all these, 8 showed new malignant tumors; which ones is not specified. The NF2 patients would have undergone radiation treatment multiple times, for multiple tumors.

"The exact carcinogenic risk after radiotherapy is unknown but likely extremely low."

Well under 1 in 1000, certainly.

"However, the risk is not zero and requires discussion with the patient, with specific consideration in young patients and those with a cancer predisposition."

Can't argue with that; the discussion should include an accurate synopsis of the actual number of AN-related malignant tumors, and the actual risk level. Nothing is perfect. I don't think a risk below 0.1% is worth considering; it is comparable to the fatality rate of AN surgery.

Steve

[LADavid]

Jan
I'm with you.  I thought a translab was a sure hearing loss thing and that radiation would preserve hearing.  At least that was my understanding when my options were presented to me.  As I understood it, since my hearing was practically nil in my AN side, there was no downside on the hearing loss issue of translab.  I can guarantee you that I have absolutely no hearing on my AN side now -- I had a little before -- but none now.
David

[sgerrard]

I'm not a doctor, and I'm not disputing Dr. Brackman because obviously he knows a lot more about ANs than I do, but I'm very surprised that he said surgery had better hearing outcomes than radiation.

I never really researched radiation enough to have come across any statistics related to this.  What kind of documentation is there to support this?  Does anyone know?  I'm mainly just curious.

All I can say is "it's not what I've heard." I'm obviously suspicious right away because he is trotting out the old "scare them with cancer talk", which I think is not very helpful, if it is not put in perspective of overall risk, and comparable risks with surgery.

Having said all that, though, I do think a middle fossa surgery at House has a good chance of being as successful as Brackman describes. I just wish they would be a little more even handed about it, since they are both good options in this case.

Steve

[leapyrtwins]

David -

No hearing on my AN side either after my retrosigmoid surgery.  Retrosigmoid gives you a chance of saving the hearing, but nothing is guaranteed.  Since my AN was wrapped around the hearing nerve, it didn't "make it" through the surgery.  Result - SSD, soon to be helped by the BAHA.

I was hoping Steve could shed some light on the radiation/hearing question, but I didn't see anything about that in his recent post- it just dealt with malignancy.

Jan

[leapyrtwins]

Ah, I posted too soon - there's Steve 

[km5]

So I have a question for poor Larry with the headaches after his surgery:

Did you have any headaches before your surgery?  Did they just come on after the surgery?

Does anyone know the likelihood/percentage of people that have permanent headaches after surgery?

Thanks for the suggestion to cut back on the research for awhile...I'm a pretty compulsive researcher, although I do hold down a full-time job.  I think I can rest after the decision is made, and we figure out how we set up the consultation with Dr. Chang at Stanford.

Thanks all,
Katherine

[Kaybo]

km5~
I don't know about Laz in specific, but I know that in MY case, I had ALWAYS had horrible headaches.  I kind of turned my back on the whole AN scene & lived my life and have just recently got back on the AN bandwagon.  Boy, was I surprised when I found out that others had headaches AFTER surgery -- my TOTALLY went away AFTER I had surgery -- I thought that everyone was probably that way - I was very naive...& I feel VERY blessed!!
K

[leapyrtwins]

km5 -

everybody is different.  I didn't have headaches prior to my AN surgery and I don't have them post op either.
Ditto for my BAHA surgery.

Jan

[OMG16]

I just thought I needed to say that a study of 20 patients with cancer after radiation as a treatment choice is in my opinion is not a useful study unless one is done to compare directly with the morbidity and mortality of surgery.  I do not usually tell newbies about what has happened to us but I feel compelled to do so in this case.  My son at 16 had brain surgery for a tumor that was not an AN however he does have allot of the same symptoms other than hearing loss.  Everyone assured us that due to his age he would be fine and recover quickly from surgery.  That was not the case and he had a small stroke during surgery and proceeded to stroke for 6 more days resulting in the loss of 2/3 of the right side of his brain.  They did not even recognize what was happening due to 16 year olds do not have strokes.  I am amazed that you were not told that all surgeries have a potential risk of stroke, infection and even death to name a few.  I do not want to scare you this is not my intention however I think that you should know all the risks with each treatment and then make an informed choice.  This is not a typical case and these results are very rare but they do happen even to the young and otherwise healthy.  Please do not take this any other way than what is intended just continue your research and don't cross any options off just yet.  I am in no way saying that surgery is not the way to go for your son and you have talked to a very skilled surgeon who has had great results with his surgeries from what I have read on the forum.

If you would like to talk to me privately just send me a PM and I would be happy to do so.

Hang in there and be sure to talk to your son openly about how he feels about the studies and different options.  Sometimes they may even make a choice for treatment that you do not agree with.  I believe he is one lucky son to have a Mother as involved and caring as you are.  Hang in there and it will get easier as time passes.  Kisses to your forehead from one Mother to another.  16

[Larry]

katherine,

I never had a headache in my life prior to surgery. Post surgery, i have not had a headache free day. For a fair amount of the time, its low level and i have learned to cope. For the restof the time, its like a sledge hammer going beserk on me. I quite often will have rather extended lunch breaks and go and sit under a tree. being self employed, it means that if i don't work, I don't get paid so it does get rather expensive to sleep too much. They are a curse. janet has had Occipital Nerve surgery to try and relieve the pain. Thus far it seems to have helped her. i need to explore my oprions downunder but not sure if that surgery is done here. I am also loathe to have any more surgery after my experience. even to the extent of getting a BAHA device. i need the hearing assistance but just can't face the surgery.

With radiation, the key questions to ask revolve around age of the equipment, experience of the operators and most importantly, the age of the software. radiation treatment is all about the skill of the operators and the accuracy of the software.

16 - You have endured a terrible experience. I can't imagine what you and your family have gone through. Your right that a sample of 20 patients is not a viable sample.


laz

[leapyrtwins]

Laz -

sorry to hear about your headaches; I hope you find a workable solution to alleviate them.

I also wanted to say that IMO you shouldn't decide against BAHA surgery because of your headaches.  Although it is a surgery, it is nothing like AN surgery.

Before I started talking to those who went before me, I thought the BAHA surgery would be another "open my head up" procedure.  It isn't at all.  If you truly feel that a BAHA would help you, I encourage you to look into it.  There is a demo that you can try to get an idea of how it would work for you.

Jan

[sgerrard]

16 - Your right that a sample of 20 patients is not a viable sample.

The "funny" thing is, it is not a sample. That is the entire extent of AN related cancer in all of recorded human history worldwide. 14 cases, 8 of them NF2. Not exactly a common thing.

Steve

[Lainie181818]

I had mid Fossa surgery 2 years ago, at House by Dr Brackman & Hitzelberg. I would absolutely wait and get advise from Stamford. As far as 3 week recovery, I find that impossible. Dr Brackman always veers towards surgery. I live in Redondo Bch and I have a son in his 4th year at UCLA. I would be more than willing to meet you or talk to you on the phone.
Lainie

[leapyrtwins]

Dr Brackman always veers towards surgery. 

For what it's worth, I've heard this from numerous AN patients who have personally consulted with him.

I'm not pro surgery or pro radiation, if it were my son, I would check into both options.

Just my opinion.

Jan