Must decide Radio or surgery

[tamar]

Hello all,
I apology for my English, I'm not familiar with this issue and got a lot of new words, never have to use before in English.

I am a 45 year old woman who was diagnosed with an AN 25mm on my right ear the 23/01/2010.  I live in Israel married + 3 kids.
I only have little hearing degradation (the doctor doesn't account it) and tinnitus, no other symptoms. The tumor full the internal auditory canal, and already stress a little bit on my brain stem.

The big question is Radio or Surgery?

Here in Israel I went to several doctors. DR Spiegelmann which is a specialist in Radiosurgery (LINAC) that recommend on the Radio option (also he do surgery in case of large tumor), and Dr. Spector from Hadasa that recommend on surgery. Both agree that there is no way to keep my hearing in a surgery.
I must say all the doctors I consulted with (I saw some more) told me about the 3 option exists for AN, but they all agree that the W&W is not a real option for me.

I send my MRI to House Ear Clinic, and they are recommending surgery. They think it might be a Meningioma and not an AN. According to them if it's not an AN there is a chance to keep my hearing, otherwise no hearing preservation.  Anyone heard about this option before? I'm quite sure that if I decide on surgery I'll go there.

I don't feel like I must take the tumor out, so radio is a real option. But I'm afraid of swelling that come some times as post treatment, and the affect it might do in my case. The tumor is already pressing the nerves and brain stem, and the doctors seem surprise I do not have any other symptoms.

Anyone have some tips on how to decide between the options? I'm really confused.

Thank  you all,
Tamar.

[leapyrtwins]

Hi, Tamar and welcome to the Forum.

Deciding on which treatment (if you have options) is often the hardest part of the AN Journey.

Radiation is a reasonable choice in your case since your AN is 2.5 cm (most doctors won't radiate a tumor over 3 cm) and it sounds like it would give you the best chance of keeping your hearing; which isn't something to take for granted.  I know, I'm SSD (single-sided deaf) as a result of my AN surgery.  Surgery is also a reasonable choice in your case if that's the direction you want to go.

It mainly depends on you and what you are comfortable with.  No one can make your treatment decision for you; it's a personal choice.

Keep in mind, while getting opinions from doctors, that most will recommend what they do.  For example, the docs @ House tend to say surgery because they are the pioneers of AN surgery.  Other docs may say radiation because that is what they do.  I think the doctor you consulted with that does both procedures is your best choice because he probably isn't biased when it comes to treatment options.  My doc does both radiation and surgery and he was very honest with me and told me about both options.

It's a tough decision.  You're best bet is to educate yourself as much as you can, find a doctor or team of doctors that you are comfortable with and have confidence in, and then make your choice.

Good luck,

Jan

[JerseyGirl2]

Hi, Tamar,

Jan (leapyrtwins) has given you some great suggestions.

I know there's at least one person on this Forum whose presumed acoustic neuroma turned out to be a menigioma -- I don't remember who that is, but hopefully someone else will remember or the actual patient will see this and respond.

If you decide on surgery and decide to go to House, you'll be in wonderful hands. It sounds as though you have some good options in Israel to consider as well.

Best wishes as you continue your research and make your decision.

Catherine (JerseyGirl 2)

[sgerrard]

Hi Tamar,

I think the patient Catherine is thinking of is Priscilla (msmaggie). It is correct that with a meningioma, hearing preservation is possible since the tumor is not on the hearing nerve.

If you are looking at HEI for surgery, you might consider contacting Dr. Chang at Stanford regarding Cyberknife. He has seen quite a few meningiomas, along with all the ANs, and would have good advice about the possible consequences of radiation treatment. You can contact him at sdchang@stanford.edu.

It is a tough decision, because for a case like yours, there is no definitive medical answer regarding which is better. In the end it is just up to you to decide which one makes the most sense to you.

Best wishes and welcome to the forum.

Steve

[tamar]

Thank you all.

I continue my searching and learning, using this forum. its very comfortable to know you are not alone, and that the decision is the difficult part. most people do not understand how difficult it is.

What I'm trying to figure out now is if I decide on Radio, should I search for another place, or can I do it in Israel?
Here in Israel it seems we only have the LINAC option, and the doctor I consulted with has the best practice in this area here. His name is Roberto Speigelmann, and he was the president of the ISRA organization some years ago.

I found out only few articles and statistics about LINAC via the internet.

If I choose to radio but not in Israel, where should I go? from here every thing is far.

thanks again

Tamar.

 

[Jim Scott]

Hello, Tamar - and welcome.

I'll echo the advice you've been offered by Jan, Steve and Catherine and I'll add that I underwent 26 FSR (Fractionated Stereotactic Radiosurgery) sessions on a Linac apparatus and found it uneventful.  The radiation was administered in low 'doses' performed on an out-patient basis over a 5-week period.  The sessions lasted approximately 40 minutes each and I drove myself to and from each one, a 60-mile round trip.  The radiation followed a partial resection of my large (4.5 cm) acoustic neuroma.  This particular procedure was followed in order to help avoid facial paralysis and other possible complications of AN surgery.  I'm pleased to report that it went quite well.  I trust that if you chose radiation, you'll do well, too.  However, as others have stated, the decision is yours, alone.  Frankly, you have to be entirely comfortable with both the choice of treatment and the doctor(s) performing it.  I assume that the nation of Israel has competent doctors that have experience with acoustic neuroma patients.  If not, you'll want to look outside of your country, possibly to the famous House Ear Institute in Los Angeles, California.   

Jim 

[CHD63]

Tamar .....

You have already received excellent advice from several others.  Just wanted to add my welcome to this forum and glad you found us.  We are here to support you in whatever you choose to do.  ..... and this is a very personal decision that only you can make.  You have already done much research and consultation.  Now you must do what is right for you in your particular situation.

Many good thoughts.

Clarice

[ppearl214]

Shalom Tamar and welcome! Good to have you here and inquiring about what will work best for you. Many of my customers in Israel and I know you are in terrific hands locally.

I share with many that...... what your 'gut' tells you will help guide you.  In your case, you do not need to travel far to receive wonderful AN treatment.  Whether in IL or Europe (mainland), you truly have options.  You have shared with us what your gut originally tell you.... so, for this decision, after continued homework, continue to listen to you gut (after you gain more knowledge of treatment choices)......... you will know what is best for you and your particular situation. 

BTW, your English is just fine!

again, welcome!
Phyl

[Larry]

And shalom to you as well Tamar, or as we say down under (Australia) - Gidday Tamar,

Steve gave you good advice re meningiomas and Dr Chang.

I had my growth zapped with a Linac machine. I had 5 sessions and so far so good (much better than the surgery route) 0- I had surgery the first time and have sufferred since. Mind you, everyone has a different outcome.

Recovery from radiation is certainly quicker and cleaner than surgery but that depends on what you really have so knowing if its an AN or a meningioma is pretty important i would think as to treatment going forward.

cheers


Laz

[Tumbleweed]

Hi, Tamar:

I also agree that Steve gave you excellent advice about contacting Dr. Chang at Stanford. There is no greater expert on CyberKnife treatment for ANs.

Click on the following link for a comparison of surgery and radiation that might answer some of your questions and help somewhat to clear up your confusion: http://anausa.org/forum/index.php?topic=6670.0
Scroll down the page a little bit and read my post there.

I hope that helps.

Best wishes,
TW

[tamar]

Hi all,

Thanks for the information and support from all of you.
After reading a lot of information here and a lot of article, I know I prefer the Radio option.

No after this decision has been made, I have to decide what kind of RADIO. As I said before, here in Israel we only have the radiosurgery one treatment by LINAC machine (is it like the NOVALIS?). no CK and nor GK.
I can have the treatment in a PRIVATE hospital by Dr. Spiegelmann which is the specialist in ISRAEL, or I can do it in a PUBLIC hospital SHIBA where Dr. Spiegelmann is the Head of the Radio department. But there I can not insure he is the one that will treat me.
Is the treatment is a TEAM work or one specialist work? I'm quiet sure that the SHIBA department has more experience in such treatment then the private hospital. So what is more importamt the DR experience or the team experience?
Should I consider traveling to USA for KG or CK?

I already have a date for LINAC treatment in ASUTA private hospital on the 14/04/ but you know, I can always regrate and do somethings else.

Thank
Tamar.
 

[Larry]

Tamar,

Linac, GK an CK machines are fairly similar in the eyes of the patient. The Linac machine that I was treated with had the choice of either a single burst or fractionated (multiple bursts). GK is a single burst, CK is fractionated.

the machines do work differently but from my research, the head guy sets the plan - strength of burst or bursts and monitors progress post treatment. As for the treatment itself, I doubt whether the head guy is involved at all. It's all down to the quality and diligence of the technicians who control the machine settings and also how up to date the software is in the machine.

GK and CK machines are "newer" than Linac but thats not really important. I guess you should find out how many of these treatments have been done at each location and go for the higher one (the more experience the better).

You can ask your man what his role is and how much attention you will get from him under private or public.

Someone please correct me if my machine analysis is incorrect

cheers


Laz

[Tumbleweed]

The only thing I would add to what Laz had to say is that both GK and CK are widely considered to be more accurate than other forms of radiation treatment, delivering radiation more precisely to the tumor and not as much to bordering healthy tissue. With all types of radiation treatment, there is a margin of error and some unavoidable collateral damage. In the latter case, the damage is usually caused by the fact that any cranial nerves that have a tumor wrapped around them cannot be avoided when irradiating the tumor. But all things being equal, CK and GK are more accurate compared to other forms of radiation, with a margin of error less than 1 mm.

Best wishes,
TW

[wise78283]

Hello Tamar,
I'm new here as well.  I opted for the surgery and had facial paralysis, right sided deafness, tinnitus and headaches as a result.   I also had to relearn to walk to not fall and could not eat properly.  This was followed by severe headaches.  I had none of these symptoms before the surgery except slight tinnitus.  I became so dysfunctional I lost my job.   There are many things I would do differently if given the choice again.   Radiosurgery would have been a first choice even though I had an excellent surgeon if I could do this over I would opt for that.  I read in the medical literature on this web site that trigiminal nerve damage in the gammaknife patients was nearly non-existant.  It is damage to my trigiminal from the surgery that caused the headaches. 

The tumor was pressing on my cerebellum causing right sided weakness leading to a number of pretty serious falls.  In fact that was how I was diagnosed.  What I know now.  Make sure that you start rehab right away and be aware of the type you might need.  I moved across country to get the proper rehab in order to get my life back.  Facial rehab has been successful for me, vestibular rehab and now I'm getting absolutely excellent care for the headaches.  They are largely gone.  They had become so debilitating there were times I could not lift my head off the pillow.  I understand there can be some similar issues with gammaknife but I wish I had tried this first. 

Take care   C

[Tumbleweed]

C, thanks for sharing your story. Can you please tell us all the following:

1. What were the dimensions of your AN before surgery?
2. Which doctor did your surgery?
3. Which medical facility were you treated at?

Because most medical facilities guard their medical-procedure outcomes like Fort Knox, it is very difficult for patients (no matter what disease or injury they need treated) to ascertain which are the best facilities and doctors for their health care. While one case doesn't tell much, it might be helpful for people to know the particulars around your case. Personally, if I were considering surgery for an AN, I would want to know the who, what and where behind your poor outcome.

Best wishes,
Tumbleweed