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Joined: 12/2/2008
Posts: 2
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I am looking to correspond with any patients who have trigeminal neuralgia who have had, or are contemplating cyberknife surgery for their TN. We are a group with an uncommon diagnosis, and I would love to hear of others' experiences. Thanx,
Luvinlife
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Joined: 1/7/2009
Posts: 1
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Met with a doctor yesterday to hear about cyberknife surgery and have decided to have it. Don't know when they will call with appt. I have had TN over 20 years, it seems to be getting worse and I just can't tolerate the meds like I use to. So between the neurologist and myself we thought it was time to seek farther treatment. Will have to keep you informed. Good luck with yours.
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Joined: 1/8/2009
Posts: 2
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I have had TN for a little over two years. It comes and goes but every time it comes back I have to increase my meds. Currently I take 2400 mg of neurontin and 1200 mg of trileptal. I am tired and unmotivated all of the time and have issues with concentration. I saw a specialist regarding microvascular decompression but I think the cyber knife is a better option. I am meeting with my neurologist in February to discuss this and probably get a referral for one or the other.... I really want off of the meds!!!
vixndogs
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Joined: 10/10/2008
Posts: 2354
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Both Gamma Knife and CK can be used for TN. Both give pain relief (complete or good partial relief allowing reduction or discontinuation of medications) in about 90%. The available data, which is not as good as we would like, suggest pain relief with CK works faster and gives more durable pain relief, but at a higher risk of facial numbness.
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: 1/8/2009
Posts: 2
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Pattycake...I cannot believe you have dealt with TN for 20 years!! I can't deal with it any longer and I have had it only a little over two years. I have a referral from my neurologist to see a surgeon to discuss either cyberknife or micro vascular decompression...obviously the cyberknife is the choice due to it not being so invasive. I will let you all know my choice and the results.... Vic
vixndogs
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Joined: 10/10/2008
Posts: 2354
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Most of our TN patients have had symptoms for over 10 years.
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: 10/11/2008
Posts: 928
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Maybe you need to get to 'em earlier!
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 10/10/2008
Posts: 2354
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I agree. Unfortunately, the dentists who do multiple root canals etc first don't make the diagnosis sooner. Fortunately, that seems to be changing
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: 10/24/2008
Posts: 3
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My mother suffered from it, convential medicine didn't help, just heavy medications with unpleasant side effects. Four sessions with an experienced chinese acupuncturist & it was fixed ! No side effects at all. it may not work for everyone, but might be worth considering.
Maria
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Joined: 10/11/2008
Posts: 928
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Certainly worth a try if it works.
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 10/10/2008
Posts: 1
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I had the Cyberknife treatment on October 23, 2006 at Lexington, Kentucky. Six months after the treatment I started having tingling in my face. About a year later I started getting small jabs in my face. Since then it has gotten worse. Should I have another Cyberknife treatment just like the first one or what should I do?
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Joined: 10/10/2008
Posts: 2354
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Contact teh treatment team. Are you on medications now? If not, then you should be in all probability.
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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