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Joined: 11/7/2009
Posts: 12
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I currently suffer from left sided facial numbness, left sided tongue and lip tingling, loss of hot and cold sensation on the left side of the tongue. Also my left nostril tends to feel like it is constantly running though it isn't. These symptoms I can live with (though it makes it a challenge to enjoy a wine tasting when you're only getting half the taste, half the nose  ))
I have another symptom that not many do, and my surgeons when I describe it to them seem to gloss it over as headache. It's not really and if you like I will describe the entire thing to you. This I don't know if I can tolerate for the rest of my days, especially if it were to get worse.
I can live with the tumour being in my head forever, heck it's been there for years anyway and I didn't know it was there.
I've been reading a lot and talked to my surgeon, and from what I found so far is that any current symptoms you have will remain.
Can you tell me what the general trend has been for cyberknife patients reporting over the years have been? ie increasing severity of symptoms vs stability vs decrease?
I'm not afraid of getting cancer from radio surgery. I'm just balancing that I may have to live with the head issue vs ssd, facial palsy, and other wonkiness from having an entry into my skull.
My tumour is 3.1cm from the canal to the point where it touches my brainstem, it is 2.1 cm almost cubed (ie the bulk of the tumour seems to be a little aggie marble in my head.) please no jokes about she's lost her marbles.
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Joined: 9/30/2009
Posts: 42
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Hey Nikkir...
On the ANA I have already enquired about symptoms on here myself. Infact, I have chit chatted over email with an ANA member and we both agreed that having a section for SYMPTOMS would be great!
We could all compare, read and know that we are not nuts in the head (sorta speaking lol).
How about having a SYMPTOMES section or something like that here on CYBERKNIFE???
5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time.
Supposedly in-operable, but I beg to differ.
www.allinonepetcare.com What I LOVE doing!
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Joined: 10/10/2008
Posts: 2346
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I am not sure you could really implement a coherent symptoms section here because there are so many different conditions that get discussed.
Most people with benign tumors such as yours, in my experience, either improve somewhat or stay about the same as far as their symptoms are concerned.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 11/7/2009
Posts: 12
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Thanks no, I didn't want to implement a symptoms section, I suppose I did not word correctly that I am concerned with the relief from symptoms or lack thereof after cyberknife treatment.
Sorry for the confusion.
Nikki
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Joined: 9/30/2009
Posts: 42
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Hey Nikkir,,
I understood you were only asking questions. I implyed the symptoms section on my own :)
No confusion, just me budding in on your space :)
Rhonda
5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time.
Supposedly in-operable, but I beg to differ.
www.allinonepetcare.com What I LOVE doing!
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Joined: 11/7/2009
Posts: 12
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Me too PetG, got your message late, my blackberry was turned off. How's that for rebelling against the system? I'll try to give you a call later today, Mondays are biiiissssy. In the meantime if you have time hit the OHIP web site and/or search google.ca for out of province prior approval.
Best,
Nikki
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Joined: 11/7/2009
Posts: 12
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So I met with the GK surgical team today. I've been turned down for treatment due to the size of my an and apparently the location. They said I should consult with the microsurgery team to see if they would debulk the tumor and then let the radiologist deal with the residual tumor.
C'est la vie. C'est la vie.
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Joined: 10/10/2008
Posts: 2346
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I am not sure that you could not get fractionated treatment on teh CK, but it would require review by a team used to dealing with these large tumors. I would get a CK opinion as well. I would be happy to review the scans for you and give you our opinion, but it might differ from the CK center nearest you.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 11/7/2009
Posts: 12
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There is currently no CK near to me, yet.  I would appreciate if you wanted to have a look. I will send you my MRI's in a couple of days.
Thank you.
Nikki
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Joined: 10/10/2008
Posts: 2346
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Send th scans on disc and I will present it to our multidisciplinary radiosurgery conference.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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