I am in the "watch and destroy" status * need help!

[SML]

Rhonda,

The others have given you great advice and great doctors to check out. I'm just chiming in to let you know I'm praying for you and hoping you get even more encouraging news form Dr. Chang and Dr. Fukushima. I’m glad you’re keeping your chin up and staying positive… that’s what will see you through this. 

Scarlett

[jerseygirl]

Rhonda,

That was really fast! Your mood is obviously better. What exactly did Dr. Sen say? I am curious now.

                   Eve

[petgroomer]

I am feeling better today.
I have recieved news over the past few days that it is very possible to do Cyberknife Surgery even tho it is a large tumour.  This will stop the growth and any further damage and possibly even shrink it over time.
I had conflicting info that CK was only possible on tumours under 3 cm.  However, I am hearing differently lately 
Is there a section on here regarding "symptoms" ?  Sometimes I wonder if what I am feeling or experiencing IS schwannoma related or not. 
Just lately... over the past 5 days... I feel something is in my throat.  I always have felt pressure on my right side in my throat when I eat/swallow and my ear feels filled with water and pops when I swallow.  However, my NEW symptom is as if something is caught in my throat.  For 5 days now it is 24/7 and makes me feel like I'm going to gag on it sometimes.  I can still eat and drink with no problem.  But it is a 24/7 persistent little bugger. 
Anyway,, was wondering if anyone else has had this symptom. 
I'm hoping it's just a hair ball from worki!!!       
Always gotta keep my sense of humour!!!  Sometimes it's all I have (other than YOU ALL!!!) xo  Everyone deserves a hug and kiss every now and then!

[ppearl214]

I had conflicting info that CK was only possible on tumours under 3 cm. 

Hi rhonda,

that notation typically applies for AN's and you would probably have to check with a CK treating team to get their take on vagus nerve schwannoma since it's a different type of tumor (as well as location).  Did you ask the docs on the CK discussion forums for this confirmation? They are best to answer it.  Rick (from the CK boards), as you know, is also a terrific resource and may be able to assist with the 'symptoms" questions....... just a thought.

Hang in there.  I'm cheering you on and following along as well.
Phyl

[mk]

Rhonda, I am happy that there is some light at the end of this long tunnel.

I think that the reason for not treating tumors above 3 cm with CK is the risk of swelling, that may affect adjacent structures to the AN, such as the brainstem, 4th ventricle causing hydrocephalus etc. The location of your tumor is different, so these considerations may not apply.

Interestingly, there is a similar discussion going on on the Cyberknife Patient forum about a cranial base swannoma located on nerve 10 and its treatment with radiation.
http://www.cyberknife.com/Forum.aspx?g=posts&t=2078#jumptobottom

Marianna

[petgroomer]

Mariana,
You are a life saver!  Do you have ANY idea how it feels to find someone else with a 10th cranial nerve schwannoma???  It is very difficult and I have only came across one other person so far. 
I am also a member on cyberknife and have put my issues on there in hopes of finding answers, but didn't know someone was right around the corner with the same issues.  Talking with the same doctor too...    I had no idea.
Well... I have messaged her in hopes to discuss some things and the journey she will face. 
Thank you so much Mariana! 

[petgroomer]

An update
Dr. Fukushima did infact contact me last week and let me know he thinks my tumour is operable.  However, keeping in mind he has not met me yet and has only seen my MRI and CT scans.  Still, those are pretty reliable things!
He wants a consult with me, so now I just have to come up with the cash for that and the trip.  It's always comes down to money.  One of my sayings (to myself) lately is.."I can't afford to live".... Crazy!  I will be approaching my Ontario Health Coverage now that I have found a Dr. that I feel can advise me either way.  It's kind of hard to go to the Insurance company when I don't have anyone to treat me yet.
Dr. Chang also did contact me regarding CK and said he would definately like to do CK on me.
I have two very good choices and decisions to make.  I could do a little of both, resection with one and CK the rest with the other.  
In the mean time.. here is a video on grief that I just found totally so true and amusing at the same time!
Watch this!  I went through all of this when I first found out about my tumour, not knowing what it was they told me it was a carotid body tumour.
Anyway, here is the link, watch and enjoy!  
http://www.digyourowngrave.com/the-five-stages-of-a-giraffe-in-quicksand/  
(keep in mind, it has some bleeped out words  )

[CHD63]

Rhonda .....

Just now seeing this post ..... it has been a wild 10 days for me!  So glad you heard back from Dr. Fukushima.  Let me know (you can also email or PM me if you'd like) when you are going to come to North Carolina ..... and especially what you find out.

Continued thoughts and prayers!

Clarice

[Tumbleweed]

Rhonda, that's fantastic that you have two doctors willing to treat you. Please keep us advised of your progress. And thanks for the link to the hilarious video. Regarding that, I think I went through the first four stages already. Still waiting for the fifth.

Best wishes,
TW

[sgerrard]

Rhoda,

I agree with Tumbleweed, this is excellent news. I would think Fukushima would get most of his information from the scans, not an interview, so it is very encouraging that he thinks it is operable. I am also pleased that Dr. Chang stepped up on the possibility of doing Cyberknife.

I don't expect it will be easy to go through the insurance process, as this is such a rare condition, but I think with some perseverance they will have to come through. It is certainly serious enough that you can't just leave it alone. I wish you success in pursuing that.

I hope one or both of these gentlemen prove to be the bottom of the quicksand. 

Steve

[TOM101]

HI,

Try this site: www.ctf.org/View-by-tag/vestibular+schwannoma/.
I am trying to get rid of mine thru drugs or preferably natural means. You need help now so I suggest you look into this site. Dr Plotkin is doing studies of NF2 patients (they get AN's in both ears and other horrible tumors) and using Avistan and other drugs, with some success shrinking AN's.

You can also google NF2 and get info on other research and drugs being tried for tumor shrinking. I am taking Propolis and Capsium.

Good Luck

Tom

[Tumbleweed]

Tom:

Thanks a lot for sharing the link to this article. This sounds promising.

Best wishes,
TW

[Tumbleweed]

P.S. (to Tom):

I tried natural means to shrink my AN before treatment, but failed. I didn't, however, take propolis and capsicum. Are you taking the Australian bee propolis or just the kind more readily available in the U.S.? In any case, please consider starting a new topic about your progress using natural means. We'd love to hear if it works.

Thanks,
TW

[Mickey]

Hi all! I`ve been taking everthing meaninful in a healthy lifestyle waitnig and watching going into 3 years now. So far all is good "stable" with next yearly MRI in Aug. I will now incorporate capsium into the mix. I  have a list posted on what I`ve been doing with a natural outlook wihich I put together by researching what other people have done and its amazing what you can find out. Best wishes, Mickey

[TOM101]

the nf2 people are trying avistan to shrink tumors. see if they can help at the nf2 forum on yahoo