Pre-Treatment Options > Pre-Treatment Options
New diagnosis from Sydney Australia
ANSydney:
Hi everyone,
I’ve just become a member of the exclusive club that nobody wants to be a member of, but everyone is so friendly.
I’ve been diagnosed with an acoustic neuroma that is “approximately 3.75cm in oblique transverse diameter, 2.4cm in oblique AP diameter and 2.1cm in the cranio-caudal height”. I’ve translated that to 2.4x2.1x2.65+1.1 IAC extension.
I’ve got about 33 dB hearing loss in the right ear, but 100% speech discrimination. There's a slight bit of tinnitus which comes and goes. I’ve also got altered taste on the right side of my tongue. Occasional dizziness, but very mild. That’s it for now. I’ll let you know how things progress.
I’ve been doing a lot of research and I’m not rushing into anything.
It looks like, once you’ve been diagnosed, the only way is down:
1) If you choose to watch and wait you will slowly decline
2) If you choose microsurgery, there’s an immediate hit and that’s about it
3) If you choose radiosurgery, nothing happens at first, things get worse about 6 months to 12 months out and then things get better.
It certainly is a good thing to have a good feeling for probabilities.
My main conclusion is that it’s an information minefield.
v357139:
Hi there sorry you had to join our club, but take heart. There is a wealth of information here, and we can help you get through this. Regarding wait and watch. Some people wait and watch, and never need surgery. The tumor does not always grow more, and does not always cause more damage.
I can be difficult to navigate the choices and come to a decision. I myself had a hard time deciding, and I took 9 months to decide. You've done some good research to start. I suggest you see a few different doctors and ask their recommendation. Best to talk to experienced AN doctors with good track records. Best to talk to doctors that are very experienced in radiosurgery about that approach, and ones that are very experienced in surgery, about that approach. Different doctors can have different opinions based on what they are good at.
You may also find it helpful to PM a person who has commented on this site. Many people are willing to talk, and talking to someone who's been through it can help a lot. Feel free to PM me as well.
Tumbleweed:
--- Quote from: v357139 on November 04, 2016, 07:43:36 pm ---Regarding wait and watch. Some people wait and watch, and never need surgery. The tumor does not always grow more, and does not always cause more damage.
--- End quote ---
The overwhelming majority of ANs do in fact grow more, so I wouldn't count on one that is already substantial in size to suddenly stop growing.
ANSydney, my experience and that of others on this forum is that symptoms typically worsen for the first couple of weeks to as long as a couple months after radiosurgery. Somewhere around the 3- or 4-month mark, it's not unusual for symptoms to worsen again. Typically by the time the radiosurgery patient is 12 months past treatment, things calm down and generally improve (although hearing typically doesn't improve, it can for the lucky few).
I'm guessing your tumor is too large along the oblique transverse axis for radiation treatments, but you should ask doctors anyway before you rule out that option. Dr. Steven D. Chang (highly esteemed Stanford Medical Center doctor) is a great resource: sdchang@stanford.edu. He will review your MRI and give his recommendation for free. Since he performs both CyberKnife and microsurgery, I regard him as unbiased as to the type of treatment he recommends for each patient on a case by case basis.
Good luck!
Best wishes,
TW
Jet747:
ANSydney,
You list a few options...there is actually another, surgery and radiation. The surgery is sometimes called debulking surgery.
This is the approach I took. In a nutshell the surgery is done to drastically reduce but not 100% remove the tumor. This gives you a good chance of retaining your hearing and minimizing some unpleasant effects if certain cranial nerves are damaged.
Your medical team then follows up in 6-12 months with radiation to kill the remaining tumor.
I'm definitely not a Dr. and don't portend to understand the idiosyncrasies of your case.
It is just an avenue you can explore with the help of your Dr.'s.
Good luck down under! Feel free to PM if you have any specific questions.
I have several friends that live in your beautiful country (Adelaide, Australia) and hope to visit them someday!!!
Best,
Jet
http://www.anausa.org/smf/index.php?topic=21969.0
ANSydney:
Thanks v357139, Tumbleweed and Jet747 for reaching out. It's good to hear from people that are further advanced on this journey.
v357139, like you, I'm not going to rush into a decision.
Tumbleweed, two-thirds of acoustic neuroma tumors don't grow, so I think it's nice to have a 6-month follow up MRI before committing to a decision. I've heard good things about Dr Chang, but health insurance in Australia won't cover such a procedure, so it is expensive. However, it may come to that...
Jet747, surgery + radiosurgery certainly has its place, however if the radiosurgeons thinks he can safely treat it, I'd rather go for one (or the other). Your 6.3 cm cystic AN would have been a good candidate for surgery followed by radiosurgery. My CPA diameter is only 2.65 cm, which still has room to grow before radiosurgeons get reluctant.
I'll fill you in on my progress, particularly my 6-month MRI which should happen at the end of February 2017.
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