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Any TN patients who have had cyberknife
Luvinlife
Posted: Tuesday, December 02, 2008 4:51 PM
Joined: 12/2/2008
Posts: 2


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
Pattycake
Posted: Wednesday, January 07, 2009 11:40 AM
Joined: 1/7/2009
Posts: 1


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.

vixndogs
Posted: Thursday, January 08, 2009 4:26 PM
Joined: 1/8/2009
Posts: 2


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
radsrus
Posted: Friday, January 09, 2009 5:44 AM
Joined: 10/10/2008
Posts: 4386


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

 


vixndogs
Posted: Saturday, February 14, 2009 7:53 AM
Joined: 1/8/2009
Posts: 2


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
radsrus
Posted: Sunday, February 15, 2009 6:07 AM
Joined: 10/10/2008
Posts: 4386


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

 


Dr. J
Posted: Monday, February 16, 2009 4:24 AM
Joined: 10/11/2008
Posts: 1070


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


radsrus
Posted: Monday, February 16, 2009 6:40 AM
Joined: 10/10/2008
Posts: 4386


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

 


Maria
Posted: Monday, March 23, 2009 6:33 AM
Joined: 10/24/2008
Posts: 3


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
Dr. J
Posted: Monday, March 23, 2009 3:54 PM
Joined: 10/11/2008
Posts: 1070


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


Don Rhodes
Posted: Sunday, January 03, 2010 7:58 PM
Joined: 10/10/2008
Posts: 1


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?
radsrus
Posted: Monday, January 04, 2010 2:59 AM
Joined: 10/10/2008
Posts: 4386


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

 


camsya
Posted: Monday, October 04, 2010 5:16 AM
Joined: 10/4/2010
Posts: 2


Having Cyberknife today. Praying it works. Living with Tn since 2007. Depression beyond belief. Ready for my life back.
Sue Womack
radsrus
Posted: Monday, October 04, 2010 5:41 AM
Joined: 10/10/2008
Posts: 4386


Good luck!

 

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

 


camsya
Posted: Friday, January 21, 2011 12:01 PM
Joined: 10/4/2010
Posts: 2


Had Cyberknife in October...What a blessing! Only have a few outbreaks! Not on any daily meds. What a new beginning. Dr Swaid Swaid in birmingham, al is awesome. It is a GOD THING!
Sue Womack
cvijece
Posted: Sunday, April 21, 2013 1:48 AM
Joined: 4/21/2013
Posts: 1


Hello everybody. I have TN on both sides. I am 14 and i have around 20 ''attacks'' every single day. It hurts so much and medications do not always help.
My mother thought about cyberknife... what are the sideeffects? Is hair loss included?


cvijece
radsrus
Posted: Sunday, April 21, 2013 6:39 AM
Joined: 10/10/2008
Posts: 4386


Probably no significant hair loss, at least not permanently. YOu can get some small spots but they usually grow back. There is a higher risk of facial numbness with CK, and our group usually used Gamma Knife for this. I assume you have had a thorough evaluation. This is a little young for TN. Surgery would be another option

 

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

 


karyn
Posted: Thursday, May 09, 2013 9:23 PM
Joined: 5/9/2013
Posts: 1


I had cyber knife almost 3 yrs ago (Sept 2010) after having TN for about 3 yrs. I got to the point where the medication was making me lazy and forgetful. I had no desire to do anything. So I started my own research and found cyber knife. I went to the center's neurolgist and had the procedure a week or so later. Took awhile for the pain to subside completely, but it gradually got better to the point where I wasn't eating the pills constantly. When I was just about med free, my mother died. When returning home after several wks, the pain started back with a vengeance. I went to the dr and she thought that since I had just gone through such an emotional experience, to give it some time to see if it subsided. It did but now I have occasional pain in my tooth area on the other side (yes, several dentists have verified it's not my tooth). I am back on the meds again but I also have facial numbness on the original side and a variety of sensations from my eye down to my lips. It is a constant sensation of one form or the other. I never get a break. I get tingling sensations, feels like something is running across my eyelid, my tongue gets numb on one side, my face will feel like it's freezing cold but to the touch it isn't, I can't touch my teeth together cause the feeling is just too sensative, my hair on the procedure side is thinner then the other side, I constantly feel like my face-lip area is wet and it isn't, I get a heart beat in my ear that will last for days, my teeth hurt, I've woke up at night feeling like someone is poking me in my face. It's so crazy and like I said I'm never ever without some sort of sensation. Can I put up with it? So far I have cause the pain from the TN was so much worse then this. I just wonder if these feelings could get worse as time goes by or if maybe something else is going on. I have read about others with the numbness but never anything like I put up with. I just turned 60 and I wonder if the rest of my life my face will always be reminding me it's there!

karyn
radsrus
Posted: Friday, May 10, 2013 3:54 AM
Joined: 10/10/2008
Posts: 4386


The numbness is generally permanent. It occurs in about 15% of patients, lower in some series. Most people consider it better than the pain, but it is still quite bothersome. It is hard to compare your sensations to anyone else, but what you describe does not sound particularly unusual.

 

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

 


Marge
Posted: Wednesday, November 13, 2013 5:27 AM
Joined: 11/13/2013
Posts: 1


I've had cyberknife for me TN. It relieved the pain, but it came back and was extremely painful. Doc increased my Gabopentin, pain receded replaced with numbness on right side of face and loss of taste on that side. I'm experiencing tingling and shocks continually. I'm on 7 pills a day and go acupuncture seeking relief. Can you help?
Marjorieevans
radsrus
Posted: Wednesday, November 13, 2013 7:17 AM
Joined: 10/10/2008
Posts: 4386


TN is a difficult problem. THe pain is relieved in most patients by treatment with GK or CK, but in at least a third it comes back, and can be difficult to control. We usually advise microvascular decompression in that situation, although the surgery will not have any benefit as far as the numbness is concerned. That is likely permanent. But the pain is often helped by the surgery. The surgery carries relatively low risk in the hands of an experienced neurosurgeon. Radiofrequency ablation can also be used, but can sometimes increase the numbness, and is not universally available.

 

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

 


Tomascito
Posted: Saturday, March 29, 2014 4:47 AM
Joined: 3/29/2014
Posts: 4


I have been diagnosed with TN, and will soon have the CyberKnife procedure. It is my understanding the physician will aim the device at the root of the trigeminal nerve. Will he attempt to destroy the nerve or will he attempt to moderate its production of debilitating shocks? If the nerve is destroyed, will I lose control of my face muscles? Will my face be numb?
radsrus
Posted: Saturday, March 29, 2014 4:52 AM
Joined: 10/10/2008
Posts: 4386


The trigeminal nerve does not control the facial muscles, but the facial nerve is nearby. The exact mechanism of the treatment results i unknown, but the nerve is not destroyed. It is possible to damage the nearby facial nerve, but the risk is about 1%. Facial numbness occurs in a few percent of treated patients

 

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

 


DChief
Posted: Tuesday, September 09, 2014 5:04 PM
Joined: 9/9/2014
Posts: 4


Had the first round of CK in Nov 2013. Worked great for about 3 months, then the whacks came back with a vengeance. On 400 mg a day of Tegratol, but still having episodes every 25 - 30 munutes. Had the second CK treatment in July of this year. I am pain free but started the facial numbness about a month ago. Now the entire left side of my face and ear, lips and tongue are numb. But on the plus side; No whacks and I got a tooth filled without any Novocaine. Start Sunday on reducing the Tegratol to zero dosage (fingers crossed)

Don TGN since April 2012
DChief
Posted: Saturday, November 08, 2014 7:15 PM
Joined: 9/9/2014
Posts: 4


Left side of face still numb, but improving. Oncologist prescribed pentoxifiline and I have at least stopped chewing my lip and cheeks. He says feeling will return in 4 - 6 months. Seizures (whacks) are still under control, only 1 or 2 per week. Down to one tegratol per day now, going for zero next week.
Don 67 years old TGN since April 2012
DChief
Posted: Monday, January 23, 2017 6:54 PM
Joined: 9/9/2014
Posts: 4


Now on Trokendi 300mg to help relieve pain. I am searching for a surgeon. The CK was wonderful while it lasted but my nerve has re-ginned itself so it's time for drastic action. I'm taking nailgun hits now 12 - 15 times per day. Hurts like a big dog!
Don 67 years old TGN since April 2012
radsrus
Posted: Wednesday, January 25, 2017 6:52 PM
Joined: 10/10/2008
Posts: 4386


The Univ of Pittsburgh has long experience with the surgery, but th expertise is widespread and I would be surprised if there were not someone near you with experience

Clinton A. Medbery, III, M.D. Southwest Radiation Oncology buddy@swrads.org
 

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