ANA Discussion Forum
Archive => Archives => Topic started by: msp_rocks on September 20, 2006, 02:16:01 pm
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Hi,
I am a 26-yr-old female with a 2 cm by 2 cm schwannoma off either my vagus nerve or my sympathetic chain. Does anyone have any experience getting something like this treated with a CyberKnife? I am inelgible for GammaKnife treatment due to the tumor's location. Right now I'm looking at a doctor in Pittsburg and the Georgetown University Hospital. Any suggestions? Any experience with the CyberKnife in this location? I'm nervous about letting someone who has never used the CK on this location before use it on my neck.
Thanks!!!
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msp,
This may help
http://www.cyberknifesupport.org/forum/default.aspx?f=12&m=4888 (http://www.cyberknifesupport.org/forum/default.aspx?f=12&m=4888)
Capt Deb 8)
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Hi Captain Deb,
The "vagus nerve" has now been mentioned twice in regard to my swallowing difficulties and the incidences of swallowing the wrong way are becoming more frequent.
I truly do not know much about the vagus nerve and another schwannoma being on the hypoglossal canal is supposed to be also responsible for the swallowing problems. is this a close by nerve or is it the same nerve with a different name.
I will find out more someday, i do not have a lot of time at the moment.
meanwhile, I am doing some exercises, learned way back in drama school to maintain my speech and the way I move my tongue. it helps me with swallowing too.
ant
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Hello antoinette,
The vagus nerve is the 10th (X) cranial nerve, and the hypoglossal nerve is the 12th (XII) cranial nerve. The following site has some one page descriptions of what these nerves do for us. Just click on the roman numeral of the nerve you're interested in, on the left of the page.
http://www.meddean.luc.edu/lumen/MedED/GrossAnatomy/h_n/cn/cn1/mainframe.htm
Regards,
Rob
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Having the swallowing nerve affected by an An is something some of us Aners have experienced.
One thing that oftens stands out about Ans is that there is such variabity about each person's symptoms.
If you browse through the 20 + more pages of the abstracts i mentioned in my previous posts you will find some that are recent that talk about all the nerves and lacrimal (tears) and vagus and such and how the treatments being now offered give much better results than even 10 yrs ago....
It's like I always thought: if one has a blob of an alien invading space in one's head where nothing new should be, the pressure, the position, the "origin" of the first cell's wrong growth will all affect degree of symptoms even before treatment never mind after.
The good news :)is that so much has been accomplished in fine tuning treatment plus medical people all over the world are pursuing the best for all of us Aners....
That's good to know.
Windsong
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Hi Msp rocks,
I have heard good things about ck and gk and fsr....
I am sure that you will get lots of responses about them.
I was wondering about what you mean when you say "sympathetic chain?" i understand the vagus aspect and have read enough about how and where shwannomas grow etc, but i don't think i 've heard the phrase sympathetic cahin in connection with an An or "schwanoma".....
thanks for any clarification on that new phrase for me..... (is this about any pain involved?"...
wishing you all the best,
Windsong
Hi,
I am a 26-yr-old female with a 2 cm by 2 cm schwannoma off either my vagus nerve or my sympathetic chain. Does anyone have any experience getting something like this treated with a CyberKnife? I am inelgible for GammaKnife treatment due to the tumor's location. Right now I'm looking at a doctor in Pittsburg and the Georgetown University Hospital. Any suggestions? Any experience with the CyberKnife in this location? I'm nervous about letting someone who has never used the CK on this location before use it on my neck.ÂÂ
Thanks!!!
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Sympathetic chain controls things like sweating, pupil dialation -- anything your face does for you, that you don't have to think about. I have Horner's as a result of exploratory surgery, which is why they think it might be off the sympathetic chain.
What is CK like? ARe you tired after it's done? How important is experience in terms of picking the right doctors?
Thanks for all of the helpful responses!
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I've been reading and posting on this board even though I was not diagnosed with an AN - the cranial nerve my tumor is on is the 9th (glossopharyngeal nerve). I have been "waiting and watching" for five years now with a starting size of approximately 9 mm and now is measured at about 12 mm with no pressure on the brain stem. I also have very few symptoms but surprisingly some tinnitus on that side, some minor sensations of fullness in the ear occasionally, and an occasional ache or twinge. I find I get hoarse easily and clear my throat quite a bit. My doctors (neurologist, neurosurgeon, and neuroradiologist) are not too concerned as my gag reflex is still intact and my palate elevates evenly. I don't have any trouble swallowing (as the bathroom scale will attest to). My yearly MRI will be at the end of November and if it is time to do something, I have decided on cyberknife rather than surgery. It may have to do with my age (60 in a few days) and the fact that I've been through many other medical situations including breast cancer.
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Hi Msp rocks,
Thanks for the explanation. I did a quick google about Horner's too after you mentioned it. Always good to learn something new.
You asked about Ck. I myself had FSR (linac). Was I tired? Not initially. However, since it was a five week thing (25 sessions) i did begin to tire halfway through, more because of a long drive each day. By the end of it I was almost euphoric, perhaps partly because it was now finished lol.... About two months later I was fatigued in a new way. In my case, I have things other than an An to deal with so I can't really attribute all my fatigue to the fsr.
As for doctors experience, mine has a great amount regarding brain tumours and the hospital has an excellent reputation. A lot of how one feels going through treatment is due to the great caring of all the team members involved in one's treatment. I had tons.
Whenever I walked through the doors into that hospital, I had a feeling of being in the right place with the right people and the right treatment. Stats of outcomes for any of the An treatment choices are not 100%. Given my specific situation and having met with doctors who gave all treatment choices (fsr or Gk or surgery) I chose what my gut said to go for. Watch and wait was not an option for me. It will be coming up a year now since treatment and i am still happy with my choice.
I did have my gag reflex checked and it was all right, even though i have some coughing/ swallowing episodes and even the raspy voice at times. I carry a water bottle with me at all times.
Am sending you good wishes and hope you get the right blend of expertise and care and experience.
Windsong