Watch and Wait....Why?

[Jim Scott]

Hi, followingHim:

Allow me to chime in with my own cheer for the good news on your husband's move forward in treating this new AN growth.  It does seem as if AN microsurgery is the most sensible and quite likely the only feasible approach to take at this juncture. 

Please know that I'm wishing your husband all the best outcomes and you the strength to support him as he ventures down this path.  I trust that we'll see a post from you soon with updated information. 

Jim

[Larry]

Hi FH,

I am in a similar situation to Rob albeit my stats are less. I had surgery 5.5 years ago and it regrew 2.5 years ago. I too was told that the surgeon got it all and it won't grow back, there will be few if any side effects and I'd retain a lot of my hearing.

Wrong in all cases. My regrowth is around the 19mm and not pressing on the brain stem yet. I refuse to have surgery again following my continual headaches. Whilst the size of Rob's an is more than the guidelines for radiation, they are guidelines only. i would suggest that you get other opinions and look in the radiation threads here for recommended doctors.

If Rob's AN is giving him trouble and is pressing on the brain stem, then he may need to take some action. If there are no repocussiions then watch and wait. I have been told that AN's can remain dormant for some time. Having said that, Rob is in a better position to have something done now (at age 64) than in say 5 or 6 years time when his body may not be in as good a condition to handle surgery

laz

[followingHim]

Hello and thankyou for your kind responses.

We have been advised that due to the size and position of Rob's an the radiosurgery was never really an option once the regrowth was diagnosed as it was already too big.  It is in excess of 3 cm now.  It would appear that there is no room for the expansion that occurs with the radiosurgery option and the microsurgery is now the preferred route.

We are at a complete loss as to why the NHS consultant recommended radiosurgery under the circumstances.  The specialist we saw privately was very thorough and gave us a lot of information and answered a lot of questions and we have a lot more faith in him.  Now we just have to wait for an appointment to come through following the case study the new specialist wants to conduct.  When we go back to the hospital we should hopefullly have a date for the surgery.

Getting a second opinion has been difficult enough, I honestly wouldn't know where to begin in trying to get Rob referred to a specialst in another country.

Again, thank you for your interest and concern.

Kind regards

fh

[leapyrtwins]

They disagreed on having surgery while it was just 4 cm ( size of a pea I was told) or waiting to see if it ever got bigger.

Kzanana -

do you mean your AN is 4 mm    4 cm is not the size of a pea.

Jan

[Larry]

Kzanana,

I agree with Jan, it's probably 4mm. If they told you to wait and watch at 4 cm, you could sue them.

Anyway, there is a lot of material on surgery, wait and watch or radiation treatment. Two surgery options can preserve hearing, one - Translab, you lose all hearing. radiation preserves hearing. With the preservation bit, everyone is different and there are no guarantees. You need to research this site on cyberknife and gammaknife radiation methods as well as Translab, Middle Fossa and retrisigmoid for surgery options. Much has been written about all of these options.

It depends on where your AN is located and its size as to the treatment options.

make sure you talk to a neurosurgeon that has a good history on AN's. There are a number of posters from Seattle, i suggest you create a post titled, help with doctors in Seattle. You will get a good response.

cheers


Laz

[LisaP]

Hi,

I'm a "newbie" and am currently under the watch and wait too.   My AN is considered small and I continue to have daily symptoms, but my Dr. (Dr. McKenna) in boston is advising me to have another MRI in August.  He states the best thing is to do nothing until you have too because treatment can sometimes cause more complications and recovering from surgery can also be long.  I have only known since March of 08.  I can't imagine waiting for 9 years.  He also told me that I could possibly live with this the rest of my life.  I can't imagine that.

LisaP

[jtd71465]

Some individuals can wait and watch, I could not.  I feel into the category of "get it out"...it comes down to knowledge and an individual decision that you have to make...not easy when you have to factor in the location of an AN.

Keep the faith.


Joe-

[ppearl214]

Hi,

I'm a "newbie" and am currently under the watch and wait too.   My AN is considered small and I continue to have daily symptoms, but my Dr. (Dr. McKenna) in boston is advising me to have another MRI in August.  He states the best thing is to do nothing until you have too because treatment can sometimes cause more complications and recovering from surgery can also be long.  I have only known since March of 08.  I can't imagine waiting for 9 years.  He also told me that I could possibly live with this the rest of my life.  I can't imagine that.

LisaP

Hi Lisa and welcome.  Many of us here on the forums are located in MetroBoston and around New England that have been treated locally.... including many treated by Dr. McKenna (I believe cmp is the most recent, along with others like kbonner, etc).... he is very renowned here locally for terrific AN treatment......You're in great hands with him and many here will attest to that.  There are many here locallly that remain in watch/wait (elliemae/elaine comes to mind first....) that are taking this time during w/w and doing as much research as they can so if/when the time comes, they have all avenues covered and will comfortable in their final decision choice.  We're all here to help and look forward to your further participation on the boards here.

Again, welcome!
Phyl

[elliemae]

Hi, Lisa
As Phyl noted (Hi, Phyl!), I am in watch and wait w/Dr.McKenna.  I was originally diagnosed 2 years ago, after about 3 years of progressive symptoms (and who know how long w/o symptoms!).  Dr M has monitored me by periodic MRIs since then (basically every 6 months).  I really started thinking about treatment options just in the past 6 months, due to increasing facial spasms, possibly indicating problems with the facial nerve (Dr thinks it's possible my AN is a facial neuroma).  However, despite this, Dr M says I can still wait (as does one of the radio-oncologists I consulted) as the growth is very minimal.

I was content to W&W for this long because I certainly trust Dr M's judgement, and I wasn't liking what I heard and read about all the surgical and radiation potential adverse outcomes.  However, as my concern over these facial spasms grows, I think the time may now be near for me! 

There is just so much information to digest in your research - and the decision is hard with all the options open if you're like me and don't really need to have it GONE.  I don't post too much (and I tend to get long-winded when I do!), but as you'll find out, all of the people and information on this forum, and the ANA too, are just terrific in providing that info, and helping us along in our decision process.

Good luck!  And, keep an eye on the AN Community forum for our next NE brunch (coming up sometime in the fall....can't remember when!)
Elaine

[Sheryl]

Hi Lisa - I responded earlier in this post (February) and wanted to welcome you as a fellow "New Englander" although at this point, I am called the "Snowbird" as we are able to spend the winters in Florida and summers on Cape cod - the best of both worlds.

I am now up to 6-1/2 months of waiting and watching a 9th cranial nerve schwannoma - similar to acoustic which is on the 8th cranial nerve.  Yes, it can be nerve wracking especially when other situations develop.  Interestingly my tumor grew minimally the first three years of W&W (maybe a total of 2 to 3 mm for the time frame) but then I had breast cancer and was started on an aromatase inhibitor called Arimidex - in English it is a medication that stops estrogen (the main culprit in my breast cancer) from developing in the body.  Ironically, and I tried to do much research on this issue, in the three and a half years I've been on the Arimidex, my brain tumor has not budged even by a mm.  Nothing I've come up with would link the Arimidex to the brain tumor.  May be some day I will win the Noble Prize!!!

Best of luck to you - you are in good hands - keep us updated.
Sheryl and Larry (Two spouses with benign brain tumors - we like to do things together!!).