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

[petgroomer]

Hello,
I have been diagnosed with a 5.60 cm X 4 cm (56 mm X 40 mm) vagal schwannoma just this year.  The doctors here told me not a surgeon in the world can help me.  I have been sent home to "watch it destroy my body" until I can no longer function those areas, THEN they'll take it out (they say approx 10 yrs from now).  They told me that my 9th, 10th, 11th and 12 th nerves will be affected with surgery and it extends up to my jugular foraman and that it is not worth doing it for those reasons. I would come out with permanent vocal and swallowing paralysis immediately.   I am obviously not happy with this.  What exactly IS going to happen?  I need help and answers.  The doctors I had gave me no other advice as to what to expect.  Just that, "You will know when it's time". 
I have contacted a Dr. Fukushima in the states and am awaiting his response to my MRI and CT scans I sent him.  Any other ideas?? Any one else have this same 10th cranial nerve schwannoma? 
I even started a facebook support for 10th cranial nerve schannomas.. nooo duhhh.. I'm the only member so far.  lol (still have my sense of humour!)
Please, if there is anyone who can help me find some answers that would be great. 
Thank you all for being here!  Seems that no one I know or talk to has heard of this and I feel so alone...
Rhonda Edwards

[sgerrard]

Hi Rhonda,

Welcome to our forum. I have Googled vagus nerve, and from what I can gather, a vagal schwannoma is quite rare, so you may not find a support group for that very easily. You are welcome here, we don't mind taking in a stray puppy now and then.

I did have a look at the Cyberknife forum, and did find one person, Rick, who had a vagus nerve schwannoma treated with CK in 2006. Here is a link to an update he posted in January 2009:
http://www.cyberknife.com/Forum.aspx?g=posts&t=1336#ektopheader

He also has a more recent post asking if anyone else has one, with no replies so far. Maybe you two can form a group:
http://www.cyberknife.com/Forum.aspx?g=posts&t=2056

(I did a search for vagus on the CK forum to find those two links).

Fukushima is a well known and well regarded surgeon, I hope he has something positive to offer. There are cases where surgery is performed, at least going by Google results, so there is hope in that direction too. I don't envy you your vagus nerve tumor, I think I will stick to my acoustic neuroma.

I do hope you find something encouraging, and wish you all the best.

Steve

[petgroomer]

THANKS Steve!
Oh My!  It is 2:49 am and I am JUST getting to bed only to be up early for work.  My mind will not let me rest until I find a reason for it to rest. 
I did contact that person and am of course awaiting a reply.  Thank you so much for replying 
It is great to have support such as yours.
Rhonda

[Tumbleweed]

Rhonda, I'm so sorry to hear of your misfortune. As someone who also has an extremely rare schwannoma (100 times more rare than an AN) in addition to my AN, I understand a little bit how shocking and unbelievable this can be. But my hypoglossal tumor is small and stable, so I can't say I've walked in your shoes.

I recommend you contact Dr. Steven Chang. His email address is: sdchang@stanford.edu

Dr. Chang is both a neurosurgeon and a doctor who will treat with CyberKnife (CK) in many cases. He has treated well over 700 ANs and is respected around the world as an expert in this specialized field. He will likely review your MRI and consult with you for free. The one caveat is that, as far as I know, he usually doesn't treat ANs that are bigger than 3 cm with CK. But who knows, he may make an exception in a case where surgery has been deemed to be such high risk for serious complications, such as yours. It can't hurt to email him and it could prove to be a turning point for you.

Very best wishes,
TW

[suboo73]

Hi Rhonda,

Welcome to this Forum, Rhonda.  The folks here are FANTASTIC, and will support you in whatever way possible.
I am so sorry to hear of your rare condition...   But i believe i would not rest either, without trying to search out the best! 
So i agree that contacting House, as well as Dr. Chang - a great place to start!

Please keep posting - we are here to help.
All my thoughts and prayers are with you.
Sincerely,

Sue

PS - Your website is very nice.  Pets are special - and i am grateful to all those who take care of my special friends!

[ppearl214]

I did have a look at the Cyberknife forum, and did find one person, Rick, who had a vagus nerve schwannoma treated with CK in 2006. Here is a link to an update he posted in January 2009:
http://www.cyberknife.com/Forum.aspx?g=posts&t=1336#ektopheader

He also has a more recent post asking if anyone else has one, with no replies so far. Maybe you two can form a group:
http://www.cyberknife.com/Forum.aspx?g=posts&t=2056

(I did a search for vagus on the CK forum to find those two links).

Hi Rhonda and welcome.  I'm also going to note Rick on the CK forums for his CK treatment of his vagus nerve growth.   I'm in communications with Rick and he's doing great!  A terrific resource for speaking (tell him you heard about him from me and Steve... and that I'll harrass him later! ).  I'm sure Rick would also appreciate hearing from another vagus nerve schwannoma patient as well.

Please contact Rick through the CK forums website.  He was treated a while back, doing fine and more than happy to answer questions.

Wellness wishes to you,
Phyl

[Mickey]

Hi Rhonda! I hear what you have said and really feel for you. It touches home with my wife being told she had a tumor the size of a softball in a bad place (stomach). I have a AN also which I`ve decided to W+W. This dosen`t mean do nothing! We decided to do our homework  by investigating all I could. We came up with a lyfstyle wihich would at least try to help our situations. To make a long story short my wifes tumor has reduced in size quite a bit and mine has remained stable. Under the circumstances we are doing quite well. Please don`t give up hope but instead do all you can to improve. Technology has improved very much in this field and the latest is work being done on treating tumors like ours with medicine ecpecially NF2`s. The lifestyle my wife and I have been following are under my name in the W+W posts if you care to look. Our hopes and prayers are with you. Best wishes, Mickey

[CHD63]

Rhonda .....

I replied about my very positive experience with Dr. Fukushima on the other thread you mentioned (other Ontario thread).  I will add here that from the size of your schwannoma, it seems unlikely to me that radiation is an option.  I will say again that Dr. Fukushima has done several thousand skull based tumors and is very experienced with many different types, including vagal schwannomas.

You should be hearing very soon from Dr. Fukushima.  His assistant, Lori, is fabulous and is readily available for any and all questions/concerns.  She totally handled my insurance claim, saying "You have enough to be thinking about, I will take care of this for you!" and she did.

PM (or email) me if you have other questions.

Clarice

[mk]

Hi Rhonda,

I will join in welcoming you. This is a real terrible situation that you are in. I have one thought: obviously radiation wouldn't work for a mass of this size, and total removal surgery is very risky. Could a debulking surgery work, where they remove part of the mass and then radiate the rest? In any case, you shouldn't leave a stone unturned in that situation. First of all have you consulted with more experts in Ontario? Just because one surgeon said it cannot be done, it doesn't mean that another surgeon couldn't do it. There is a lot of expertise at the University Hospital Network in Toronto, Sunnybrook etc. Also within Canada Dr. Akagami in Vancouver. And of course the States. Another forum member, Donnalynn, was told in Alberta that nothing could be done in her situation, but she received very successful treatment at HEI. So please don't despair.

Best wishes.
Marianna

[Jim Scott]

Hi, Rhonda ~

I don't have anything significant to offer you that hasn't already been posted but I did want to extend my own welcome and hope that you'll find a solution to your vexing problem, soon.

Jim

[Vivian B.]

Hi Rhonda,

I wanted to welcome you to the forum and tell you not to give up exploring your options with other Specialists. Others have already mentioned some. I am not exactly sure where you are located but there are great surgeons in the States as well as Canada. In Ontario, Sunnybrook as Marianna mentioned has some greate doctors. Dr. Nedzelski who is an ENT surgeon and Dr. Schwartz who is a Neurosurgeon and also specializes in radiation. I have seen both doctors myself and they are great, very compassionate and straightford doctors with a lot of expertise in their field. Don't despair. There is always hope.

Vivian

[petgroomer]

THANK YOU so much for taking the time to read and write.  I have learned so much already from this forum and past archieves.  I have contacted Dr. Chang and also the Montreal Hospital in Canada that does cyberknife surgery and also talked with another schwannoma gal on the phone today to find out her story and share our symptoms.  Amazing!  I do not feel so alone now.   
The hospital I was first diagnosed at this year was Toronto and I am sure they consulted with every physician available to them for answers.  The size of my tumour has them walking on thin ice even trying to touch it.  I appreciate their honesty to tell you the truth, but still feel they could have steered me in other directions.  However, at the end of the day,, all we have is ourselves. 
I am still going to contact HOUSE.  Such a small word, yet everyone knows what I'm talking about on here anyway
I feel that the more I get my story out, the more I learn, and am directed towards more channels!
Keep the ideas coming!
xo

[Tumbleweed]

I think Marianna's advice is outstanding, Rhonda. A number of our forum members, including Jim Scott, have had tumor debulking followed by irradiation with very successful outcomes. I suggest you PM Jim to find out more.

There is always hope. Someone somewhere has an answer for you. Search til you find it! We'll be with you every step of the way.

Best wishes,
Tumbleweed

[SML]

Hi Rhonda,

I just wanted to add my support and prayers as you start your search. The others have given you some good advice. Since I had my AN taken care of with surgery I can't offer recommendations on CK/GK, but there are many here who know who and where the best doctors are for that. I hope you continue to stay with us on this forum... we are always here for you!

Scarlett

[Sheryl]

Hi Rhonda - I may be able to join your exclusive club.  In November, 2001, I had a very bad headache and went for a brain MRI.  Fortunately the headache was due to a blood pressure problem which is now controlled with medication, but unfortunately the "incidental" finding was of a 9th cranial nerve schwannoma.  That was almost 8 years ago and I am still in "W&W".  I've been told that surgery is very risky and that my type of tumor is rare.  It was first measured at 9 mm (although a neuroradiologist specifically looked and thought it was a tad larger) and at my last MRI in 2007 was measured at approximately 13 mm.  I went to a two-year MRI interval and will be having another in December of this year.  I am having a few vague symptoms but nothing that I cannot live with at this time.  As you know, my symptoms would be gag reflex problems, hoarseness, and swallowing difficulty.   If or when it is needed, I will probably go with Cyberknife. 

Ironically my husband had surgery in 2004 for a meningioma (another type of benign brain tumor).  It decided to make another appearance in 2007 and he had Cyberknife but the "bugger" came back a third time and this past July, he underwent another surgery and has been told that he may need radiation to catch any microscopic cells left.  We go for a consult with a radiation oncologist in two weeks. 

Even though not an AN on the 8th cranial nerve, I have found wonderful help, advice, and caring on this board.  Good luck and keep us informed.

Sheryl