I have had TN now for 7 years. I have had Gamma Knife ad an MVD. Two years later now after the MVD I have severe numbness. The whole right side of my head is numb. My face my scull. My lips and tounge are numb. I have reduced ability to atste and smell. I am considering going to the MAO clinic . I feel despatae now. Has any one out there had this type of reaction??? Tom
Where do you live?
Where people go sometimes is Michigan… Dr. Ken Casey … He learned in 1970 s
How to do MVD and does help people who have not had the best. Or those who need a great consultation, or a dose of hope.
I flew from Missouri to see him, and drove back…2 years later no pain… Some get less pain.
I did not want to go to mayo…took months to jump thru all their red tape. Dr. Casey has decades of experience…and little wait time.!
It WAS Dr. Casey who did my MVD. I considered him the best.NO pain since.... but the numbness is almost as bad. Don't know what to do next. TOM
Kc Dancer Kc said:
Where do you live?
Where people go sometimes is Michigan....... Dr. Ken Casey ...... He learned in 1970 s
How to do MVD and does help people who have not had the best. Or those who need a great consultation, or a dose of hope.
I flew from Missouri to see him, and drove back....2 years later no pain...... Some get less pain.
I did not want to go to mayo.....took months to jump thru all their red tape. Dr. Casey has decades of experience....and little wait time.!
Hi Tom,
I’m sorry to hear of your numbness after GK and MVD, is it painful numbness? Some get anaesthesia dolorosa which is quite painful.
With GK and MVD there is a risk of facial numbness to varying degrees, I know my NS warned me about it mvd pre-op although he did say it was a small percentage that get this.
What does your Neurosurgeon say about it?
Mimi
He says that it is more likely the numbness is a result of the GK. That the MVD sort of woke a sleeping giant. I don't know if I'm buying that. I had no numbness for two years after the GK. Then I have the MVD and "coincidently" the numbness begins 5 weeks after that. Hard for me .to grasp that. The numbness is not at all painful!!. If you think of it,,, numbness is the exact opposite of pain/ It is NO feeling at all. Its like going to the dentist, getting novacaine, in your entire face, skull, mouth, tongue, lips,,,,,, and it never wears off. I describe it to peopleas a "painless torture".
Mimi said:
Hi Tom,
I'm sorry to hear of your numbness after GK and MVD, is it painful numbness? Some get anaesthesia dolorosa which is quite painful.
With GK and MVD there is a risk of facial numbness to varying degrees, I know my NS warned me about it mvd pre-op although he did say it was a small percentage that get this.
What does your Neurosurgeon say about it?
Mimi
I have painful numbness (anesthesia dolorosa). It is absolutely miserable. It is impossible to explain to people. The symptoms are so random! It feels like an elephant is sitting on the side of my nose most of the time. I got this after my 2nd Cyberknife. The numbness started in the corner of my mouth and chin about 3 months after the treatment and has worked up throughout the whole face, inside of mouth, eyeball, scalp along with many additional problems. I know the numbness is miserable but you are glad its not painful numbness. Honestly, I don’t believe there is anything anyone can do for the numbness. We have to just live with it. Once the nerve is damage, we are screwed!! I am really sorry this has happened. All we want is to be cured and we try to medical treatment then it just makes the situation worse. Go figure!! Sorry to be so negative about the situation, but I tried attacking this with a vengeance and it is just worse than when I started!!
Hi tom im new to the internet so bare with me.i had my surgery going on two years. When I first had my surgery parts of my fight side where num.i also was seeing double from my right eye.most of my numness has gone.i still have numness on the top part of my head.and the inner right side of my nose.i hope that this will give you some kind of information that you are looking for.
I would think that Casey would have told you that Gamma being first,
would bring chances down for MVD…to be good.
he has been the best…I know a handful of people he did surgery on, who could not be helped as much as thought… Everybody has different anatomy.
i do know one other that did get your exact thing…gamma+MVD with Casey = numb face
…I have discovered for me I would go to dr. Lim at John Hopkins in Baltimore if Casey retired.
I don’t know personally about the numbness. Just put that one word here in search box, you could read for three days here on the word NUMBNESS here.
I hope you find an answer.
I had Gamma first with limited results but the pain was manageable for 8 months. I had MVD two years ago and woke up with my right side numb. It feels like I am half way through the effects of Novocain. The numbness is the entire right side. I have blurred vision, ringing in my ears, my taste is effected as well as my sense of smell. I have learned to live with it as it is not painful. I do occasionally bite my lip and not realize until someone points out I am bleeding. My dentist wont believe me and insists on using Novocain when I have something done on the right side. Overall, I would rather be numb than in TN pain.
I hope you find help.
DonnaS said:
I have painful numbness (anesthesia dolorosa). It is absolutely miserable. It is impossible to explain to people. The symptoms are so random! It feels like an elephant is sitting on the side of my nose most of the time. I got this after my 2nd Cyberknife. The numbness started in the corner of my mouth and chin about 3 months after the treatment and has worked up throughout the whole face, inside of mouth, eyeball, scalp along with many additional problems. I know the numbness is miserable but you are glad its not painful numbness. Honestly, I don't believe there is anything anyone can do for the numbness. We have to just live with it. Once the nerve is damage, we are screwed!! I am really sorry this has happened. All we want is to be cured and we try to medical treatment then it just makes the situation worse. Go figure!! Sorry to be so negative about the situation, but I tried attacking this with a vengeance and it is just worse than when I started!!
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I have a combination of TN and painful Anesthesia Dolorosa…you are absolutely right it’s miserable!!! The TN shoots thru my eye to my molars like a hot ice pick and the burning numbness in my cheek, pallet and lip even sometimes causes me to slur my speech as though I’ve just had Novocain. In many ways the AD is worse than the TN because it is constant and unrelenting.
I did feel wonderful this morning so I got on and was nice and busy. A pain attack came at lunch so I took some cocodamol and lay down. On waking I ave storage numbness in my bright side. So strange its had to explain its radiating from my ear and over my face mouth, cheek and ear. Why oh why
I had my MVD just this past mid July. I too have severe numbness. I would rather call it frozen, since it feels so cold most often. My pain is gone, and for this I am thankful, but I hate what I feel like now. My Dr. says that this was a possibility and really doesn't make too much of it. This is what I don't understand. Just because he can't do much about it doesn't mean he shouldn't be addressing it. I think the doctors feel as bad about it as we do and are dumbfounded about the situation. My Dr. is the best in the area and very highly regarded. We need help with this! Does this complication determine the length of the success of our MVD???
DonnaS, I know exactly what you are experiencing!! I had Gamma Knife in 2007 and an MVD in 2011. As a result I have the same thing as you. What started out as a slight " tingling " in my upper lip(right side) gradually/slowly began to spread. Day by day, week by week, month by month, year by year. Countless trips to the neurologist, surgeons. No answers, no relief. Today, 10 years later the entire right side of my face and skull are numb. You could draw a line right down the middle of my face and the right side is numb and the left side is mostly normal. Just when I think it has peaked, I will get " spasms" ( the kind that used to be associated with that sharp stabbing pain) and the numbness will " intensify". We ALL know how bad the TN pain is. The numbness is a different type of torture… I have good days and I have bad days. I would give anything for the numbness to go away, or even decrease in it’s intensity would be a victory… You are not alone. When I read your comment I could relate to your situation. I know exacttly how you feel. I know my message is a little on the depressing side. We just need to be as positive and strong as possible. I wish you strength in you on going battle. Tom
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It is now 10 years after my MVD and the entire right side of my face/skull is numb. It mostly affects my right eye socket, cheek , mouth, lips, tongue, and gums. I have not eaten and chewed food on the right side of my mouth. I cannot feel the food in there . I have bitten my cheek countless times. While there is no “sharp TN pain”, I do experience some burning and mild sting sensations with the numbness. If only they could come up with a procedure or medication that could help reduce the numbness. We live in such an advanced medical world of technology. So many amazing unbelievable thing can be done!!! They tell you before surgery consultation that “some degree of numbness is possible”. Never in my wildest dreams could I have imagined the severe amount of numbness it developed. I would not recommend this MVD procedure to anyone knowing what is possible. I don’t blame Dr Casey for it.There definatley needs to be some more extensive R &D to help conquer this debilitating disease. I welcome everybodys comments and input. TOM
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