ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: petgroomer on September 29, 2009, 10:34:39 pm
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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
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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
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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
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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
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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!
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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I just want to add to what Donnalynn has said. Dr. Brackmann developed many of the brain-surgery techniques that are in use today worldwide. He will also review your case for free, Rhonda. You should definitely contact him or one of the other surgeons Donnalynn mentioned. HEI has an unsurpassed reputation for successful brain surgeries.
Best wishes,
TW
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Ok, so I have sent out my MRI to 4 different doctors in the states. I hesitated sending it to HEI only because many have spoken how then are amazing with AN's. Mine is not an AN, it is on the 10th cranial nerve. However, after reading more over the past few posts, tomorrow I will go to the mail and mail it off. Give them a call to let them know.
Definitely a wise idea. If nothing else, HEI might be able to provide you with names/places that specialize in your exact condition.
Best wishes as you continue your research!
A New Jerseyan who is very thankful to have selected House for my AN treatment,
Catherine (JerseyGirl2)
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Rhonda, I'm pretty sure HEI does all kinds of brain surgeries and not just those to remove an AN. You should probably call them before you mail something to them, so it doesn't get lost in the shuffle. Ask for Dr. Brackmann to return your call and he will.
You're making all the right moves, Rhonda. It's great that you're seeking multiple opinions from the most qualified doctors. You are going to be okay.
Best wishes,
TW
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Once again, I need to relay my appreciation to all who are on this list and support eachother!
I feel I am getting in tune with what is going on and feel more confident with the decisions I will eventually make.
My head has been mailed all around the states.. lol.
Acutally, was a bit of a sobering moment for me the first time I had to mail my MRI cd off to the states. I actually had a good cry about it. Was weird sending off a part of me in such a cold way. Knowing my future was in that envelope and the answers coming would be life changing. After my 5th cd, I'm a pro now!!!! Not even a whimper. :P
I am going to have a chit chat with Donna tonight and I am looking so forward to it!
Thank you all so much!!!!
Rhonda
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Spoke with Donna for 2 hours! It was fantastic and I would advise anyone of you/us to join together not only on here, but by other means such as phone. She was an inspiration to talk with. Thank you Donna!
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Hi Rhonda,
I imagine a phone call with Donnalynn would cheer anybody up. :) (Note to self: must speak to Donnalynn some day.) I am glad to see you are making some contacts and feeling better about dealing with what lies ahead for you. We are going to be with you every step of the way.
Very best wishes,
Steve
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I feel as if I have won a million bucks! Dr. Friedman called me back regarding my "condition". I will not go into specifics,, BUT,,,
He was a ray of sunshine to me on a cloudy day....
Rhonda
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That`s great to hear! Keep on doing all you can and staying positive. There is a silver lining and with todays technology I`m sure youl will get all this behind you. Research, Best Wishes, Mickey
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Hi Rhonda,
Chiming in to welcome you and to let you know how refreshing your attitude is! I am sure that everyone is anxious to hear what Dr. Friedman's conversation went. Please don't keep us in suspense. We are all following each and every post and continue to hold you and everyone in our prayers! Blessings to you and may you get good news soon,
Jackie
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Hi, Rhonda! Been following along on this thread, but wanted to pop in to say that I'm SO glad you were able to talk with Donnalynn - I was able to speak with her prior to my surgery this time last year, and what a world of help she was (kisses to you, Donnalynn). Also, I think "ray of sunshine" would have been how I would have described my first conversation with Dr. Friedman...that, or a very comforting warm blanket.
I certainly wish you the best wherever you ultimately go for your treatment! We're all here for you, as I know you can already see,
Cindy
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Hi, Rhonda,
I just got back from surgery at House with Dr. Brackmann...while I was there, a woman from Dallas was in visiting...it sounds like she had what you have and had surgery with Dr. Brackmann and Dr. De la Cruz 8 years ago for it. It was very rare, very complicated and she had a rough recovery as it affected her swallowing and her vocal cords initially but she was doing great and was so positive. I do not think she is on the forum, but the point I wanted to make is that House deals with all this rare stuff and has plenty of experience with it, so I think you will find hope and possibility with them. Good luck and keep us posted.
Cheryl
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Cheryl:
These are the stories I like to hear!!! Woo hooo!
Thank you Cheryl for your support and positive outlook... :)
Everyone:
By the way, I am reluctant to say what Dr. Friedman said as of yet as he has not met me. Yes I sent him 2 preliminary MRI views of my "new addition" and he was very positive and made me feel very good about the situation, but since he has not seen the full MRI yet, I'll wait before I comment. I mailed the MRI out to him yesterday. Once I DO meet him (and I WILL meet him), I'll be better able to let you know the service I recieve and what exactly will be happening.
Of course I'll keep you all posted.. :-*
Wish I could change my post Subject line to: "Watch and Conquer" status. Yiiippeee,, I can and I did!
xo
Yeah yeah yeah,, I get all huggy and kissy when I drink wine... yummy!
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Here is the MOST informative website info I can give to anyone with an AN.
Talks about size vs. treatment. Types and the history of AN's....
http://www.bcm.edu/oto/grand/01_04_01.htm
I even read it all.. LOTS OF READING!
I found it by doing a search for the texas woman with a vagal schwannoma mentioned above... but so far came up with this.. lol
Anyway, it deals with so many treatments and it pretty much answered any question I would EVER have if I an an AN.
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Rhonda .....
Thanks for this very informative link to acoustic neuromas. I read (or skimmed) the whole article and as with many articles on ANs, it is using specific data for presentation purposes. It did seem to be quite accurate and up-to-date with much of the current literature, however.
The main thing I took out of the article is that we have to be very careful not to try to put all ANs in nice little boxes. There are huge variables from person to person. Each of us has a unique journey we have walked ..... or are walking. How grateful I am that my AN was diagnosed in 2008 and not 1908 ..... or even 1958, for that matter. What giant progress has been made in the treatment of ANs!
Thanks again. Clarice
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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! :)
Hi Rhonda:
I had Dr. House. He is the man! The best doctor - of any kind - I have ever known, period. This guy spent 12 hours painstakingly removing my tumor.
Pete in GA.
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Here's what I find amazing, even though I shouldn't: that any MD would tell someone that they are hopeless just because they don't know what to do. That's two of you in Canada (and I'm sure many in the States) who have been plunged into hideous despair, and how many others out there who don't have the education, wherewithal or expertise to do research on their own? Those MD's have the same access to resources that we do. How many of you who have taken the time to answer have an MD degree? Why can't those that do spend an hour or so on the internet--an hour or two that could save someone's life or quality of life--instead of protecting their own vanity by stating facts based on their own deficiencies? I don't get it. It's criminal.
Sharon
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Well, I really don't have much to say. ???
I have been contacted back by both Dr. Brackmann and Dr. Friedman and they both agree it is too big to work on. That because I am still able to function that it is best left alone. Once again, my only remedy is to "wait until it destroys". I am upset. I was hoping there WAS a doctor in the world who COULD help fix me. I was told that eventually I will lose my 9th, 10th, 11th and 12th cranial nerves but that I will still be able to function. (what does "still be able to function" mean?) I really just wanted to talk with them more indepth. I really needed more answers as to the symptoms I AM having. Anyway,, back to nothing.
I am not symptom free. However, with surgery they reassure me that my outcome will be worse than I am living with now.
Obviously not a very Happy Thanksgiving to me (Canada), and I'm not feeling too good about this.
I'm.. Over and Out ....
Thank you all so much for your support and thoughts and advice...
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Oh, I am so sorry that the news you received weren't more positive.
Here is another (maybe last resort?) thought. What about SBI (Skull Base Institute)? They specialize in non-invasive, endoscopic surgery. There are many ANers on the board with excellent results from SBI (frankly I have not heard of anyone who is not satisfied - other than their very high price). I have no idea if endoscopic surgery is feasible in your case but it wouldn't hurt to ask them.
I hope there is a way out there to get you out of the "watch and destroy" status.
Marianna
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Thank You Mariana...
I do have one last person I am waiting for an answer from, it is Dr. Takanori Fukushima from the Carolina Neuroscience Institute. He is not back until the 19th and I should hear from him then.
I want everyone to understand I appreciate the honesty from the Dr.'s at HOUSE. But it was not the answer I was looking for or wanted to hear.
I may very well contact SBI and see what they say after hearing from Dr. Fukushima.
I just don't have any idea what I am in for here at all with it being left in me.
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petgroomer,
I'm sorry to hear that HEI was not able to give you answers you seek... I tried to do a little research for you... I found many studies being done in Japan, Belgium and the UK for vagus nerve schwannomas, but did stumble on a group in N. California that may be worth touching base to see if they can help or maybe recommend a direction for you to take with your research:
I found this study on the AMA website done by a group out of U CA/San Fran:
http://archotol.ama-assn.org/cgi/content/abstract/133/7/662
Author Affiliations: Departments of Otolaryngology–Head & Neck Surgery (Drs Saito, El-Sayed, and Eisele) and Radiology (Dr Glastonbury), University of California, San Francisco.
It may be worth checking into. I'm not sure if answers are out there but was trying to find you something more closer to home to help the cause. Please hang in there (I know easier said than done). Know that I do understand (as I also have a non-AN ailment that I've been seeking answers and continue the hunt) and I don't know if this info... or if my wellness hugglez will help, but certainly worth a try.
Phyl
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Rhonda .....
I know it has to be most unsettling to wait this out. From my own experience I know that Dr. Fukushima will be very honest with you and he will not attempt something he does not feel would improve your life. I know that is most likely the case with Dr. Brackmann and Dr. Friedman at House, as well. That being said, House has really perfected AN removals and that is their specialty. Dr. Fukushima has done many different types of skull base surgeries and thus has much experience beyond ANs. This past July he removed a second meningioma from a friend's skull. This one was wrapped around the major blood supply to the brain and thus he was not able to totally remove it for fear of injury to my friend. She has had a marvelous recovery and is back doing everything she wants to do. Obviously she has concerns about regrowth so will have regular MRIs.
I pray that Dr. Fukushima will have some options available for you when he returns on the 19th.
Feel free to PM me and I will be happy to give you my phone number or answer any questions you might have.
Clarice
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Rhonda ~
I'm so sorry to learn of this news from HEI that has brought on your feelings of dejection, which are quite understandable. I don't have an answer but I hope Dr. Fukushima will have some or, if not, that you'll find a workable solution to your vexing situation. You're in the thoughts and prayers of many today. Please do not allow yourself to become totally disheartened. There is always hope.
Jim
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Hi Rhonda! Still hoping that you find the right solution. I have mentioned before that I`m W+W for over 2 years now "stable". My wife has a tumor in the stomach area which was attached the "messentary" artery which makes it just about unoperable. After byopsies came back negitive they put her on W+W with a major change in diet and lifestyle. We gave it 7 months and went back expecting the next step be "debulking" To our suprise the tumor reduced in size considerabley. Now we face the next 7 months with more positiveness looking for good results after the holidays. We both feel very good. Please don`t give up hope. Search out allturnatives. We did all the research we could on a healty lifestyle with especially living with tumors accompanied by power of prayer and so far we seem to be doing pretty good under the circustances. I did put a whole load of the supplements we are takin in the W+W post board. Prayers are with you, Mickey + Pat
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Dr. Brackmann was kind enough to call me tonight and leave a message. He did mention to check out cyberknife and see if they can work on a tumour of my size. He was very nice on the phone and offered to talk with me tomorrow if I needed to call him.
:)
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Petgroomer,
I have read about your plight and I am sorry I am jumping so late. I had 2 AN surgeries, one in 1988 for a 6x3x3 cm tumor and the second one in 2007 for a regrowth attached to the brainstem. My first tumor spanned most of the cranial nerves, from 3 to 12 and it was huge (I am a very small person with a small head) but I functioned perfectly. Even my hearing was perfect as evidenced by an audiogram before surgery. The discovery of such a huge tumor was quite a shock to everybody. I stood to lose all the cranial nerves affected but lost only the 8th where AN was. So, I was practically in the same boat as you are now, if not worse. Who could predict that I would have the second surgery on the same already damaged cranial nerves and it would work out? That was a difficult situation, too, not so much comparing to the first surgery (that was no comparison - first situation was infinitely more challenging) but comparing to what people go through with AN now. Nevertheless, I made it and this should give you hope that you will make it, too.
I met with a lot of surgeons and radiation specialists during my AN adventure. I also did not like what HEI told me, so I did not go there. I do have the utmost respect for them and all other surgeons who spent their time consulting me. I feel they clarified and explained the situation so I eventually could make the right decision. I never spoke with Dr. Fukushima and I am curious as to what he has to say. I ended up at SBI for my second surgery after so many surgeons gave me poor odds and one even refused to see me even though he was highly recommended on this board. Don't get me wrong. Dr. Shahinian at SBI is no magician and he might not be the right person for you after all. Just because my surgery worked out is no guarantee that yours would, too. At this point, though, a consultation with him is very worthwhile and I would love to know what he thinks. There is one other doctor in NY whom I seriously considered. That is Dr.Sen at St. Lukes Roosevelt hospital. Let me know if you have trouble finding his phone number. I can help you with that. Both Dr. Sh and Dr. Sen seemed to me to thrive on challenge (don't we have plenty for them) and both took out very difficult tumors when other doctors refused.
From my consultations and experience, I doubt that any surgeon in the world can remove such a huge tumor in its entirety while keeping the nerve it is on.I could be wrong on that one. However, they can remove most of the tumor while preserving the vagus nerve. The nerves 9,11, and 12 should be spared. The tumor thus can be debulked with a little being left on the vagus nerve from which it originates. If the remainder starts to grow, it can be radiated. Vagus nerve is more robust than facial or hearing nerve and is VERY resistant to radiation, as I was told by radiation specialists. Small size of the remaining tumor means that other nerves will get a minimum of radation and therefore a minimum of damage. Moreover, the total amount of radiation needed will be minimum as well. You might experience some vagus neve damage but it can be definitely lived with. It is not the same thing as the vagus nerve absence. By the way, which side is your tumor on?
I hope everything works out for you. You are facing a challenge, for sure, but I don't think your situation is impossible. There is a lot that can be done. Best of luck!
Eve
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Hi Rhonda,
Eve's response sounds encouraging. I would also see if you can contact a Dr. on the cyberknife forum, or Dr. Steven Chang, who does CK at Stanford. I don't know what they will say, but the rules for a vagus nerve may be different, and it is always a case of balancing the outcome of treatment against the outcome of no treatment.
I know it is daunting to face it, but don't give up hope yet. Somebody may come through for you.
Steve
CK forum: http://www.cyberknife.com/forum.aspx
Dr. Chang: sdchang@stanford.edu
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Hey Steve,
I did already send off the MRI to Dr. Chang with no response yet. I will call him soon to inquire. When I first contacted him, he sent a nice email requesting the MRI. I will find out more soon from him I hope.
I thought I had covered most places and Dr. on my quest. Obviously with the help of all of you, I have been able to contact Dr.'s of high calibre.
I will keep you posted with the response from Dr. Chang and Dr. Fukushima. Also from the cyberknife.com list I sent a Dr. on there a copy of the MRI.
I will not give up hope.. (actually I kind of did mentally in my earlier post... ) but with you all kicking my butt back into gear I'll keep positive.
Again all... thank you, thank you, thank you...
Thank you Eve and Micky for the informative info and hope. I will definately try the SBI!! I'll email them first with some prelim pics and my plight. :) By the way, the tumour is on my right side having displaced my two carotid arteries and jugular vein quite a bit already.
Clarice, I appreciate you keeping my hopes up regarding Dr. Fukushima. Looks like he may be of good advice and knowledge!
So today I was a bum alllll day because it was our holiday Thanksgiving. Laid around on the couch ALLLL day.. lol Had my 2 day feast during the weekend. I am so looking forward to getting on with my week of work! Keeps my brain busy. :)
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Hi, Rhonda:
I am hopeful Dr. Chang can help you; he is amazing, a truly great man.
Here is a link to my very first post on this forum (almost 2 years ago): http://anausa.org/forum/index.php?topic=5782.0
The info I posted there is a compilation of all the research I had done on natural remedies I had hoped would shrink my tumor. Alas, it failed for me and I ended up getting CK. Maybe you'll find something helpful in my research that will at least slow your tumor's growth. I don't believe natural remedies work, by themselves at least, in shrinking an AN. But maybe you would have more success with a vagal schwannoma.
Just throwing out ideas here... trying to help in any way that might somehow work. I still think medical intervention is by far your best hope, but if nobody will treat you then maybe the info on natural remedies might be of some help. I do think (but can't confirm scientifically) that natural remedies can serve as an effective adjuvant to western medicine. That is, I've continued taking a lot of supplements since getting CK, and (perhaps coincidentally) my AN has shown extraordinary shrinkage. But the remedies did nothing to halt its growth before I got CK.
Anyway, my thoughts and prayers are with you. I hope Dr. Chang or SBI or some other doctor can help you.
Sincerely,
TW
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Rhonda,
Hang in there!!! I know there is a Dr out there who can help you. Stay strong and know we are ALL here for you!
Anne Marie
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Eve,
You are correct when you say some Doctors love a challenge.
Dr. Sen did infact contact me back and I was very happy with his remarks.
I am looking for a cure now. I do not want to wait around until it over takes my 9-12 nerves as I have been requested to do and then I'll be 50 yrs old then and take longer to re-coup or even the damage will be more progressed to even do so.
Dr. Sen gave me a better outlook on my situation and some avenues to turn to.
Dr. Brackmann/Dr. Friedman also did the same, I must commend them on that. However, Dr. Sen gave me more hope. ;)
Will keep you posted again on any more news that comes my way!
Hey,,, just so ya know.. to all you 50-ers.. :) 50 is NOT old, I'll be there soon myself, I just feel the younger you are, the faster you can re-coup and the less damage will occer by then.
Rhonda
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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
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Rhonda,
That was really fast! Your mood is obviously better. What exactly did Dr. Sen say? I am curious now.
Eve
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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!!! ;) :D
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!
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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
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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
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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... :o 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!
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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 :) )
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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
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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. ;D
Best wishes,
TW
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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
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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
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Tom:
Thanks a lot for sharing the link to this article. This sounds promising.
Best wishes,
TW
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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
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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
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the nf2 people are trying avistan to shrink tumors. see if they can help at the nf2 forum on yahoo
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Avistan is used on different type of "malignant" growths only................. folks, AN's are "benign" growths, please keep this in mind. There is currently no medical proof of any medication working to reduce/get rid of AN's. Please refer to the ANA site for add'l info for how AN's are treated for confirmation.
http://www.anausa.org/treatment_options.shtml
Phyl
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I did read about Avistan last night and found the same info regarding use on malignant tumours. I always appreciate any options and check them out against my own condition. When you're in a watch and wait because there is nothing else they can do to help or willing to try for you because of the size of it, then I'll take whatever advice anyone has... Thanks for your info TOM101 and Phyl.
xo
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Avistan has been used on a small group of NF2 pts. I think 10. They had to have certain requirements to try it and did help the hearing of some but not all. Slattery talked about it at the last symposium. I can't remember when the next trial was going to be done with it or where else might be trying also. Cheryl R