I just had MVD surgery on 09-16-2013. I am extremely happy that I have had this surgery however I am really concerned because since having surgery I have had extreme burning facial numbness really around my mouth into my jaw lline and my tongue is numb and has a burning type pain to it on the right side which is the side i had the surgery on.I also feel like I am always drooling on the right side of my mouth because of the numbness, kinda like you came back from the dentist but it awful. I think I am developing a tic. It is driving bonkers..I knew i would making some trade offs from the severe pain of TN and shocks I as having but I was not aware that this could of happened to this effect. Now my family told me that the surgeon told them that when he was in there during surgery he "combed" the nerve or shredded it I guess ?? Has anyone heard of this? I am recovering very well and fast from surgery just not liking this pain from the numbness in my tongue and jaw:( Please fill me in if you can. Thank you.
I had my surgery in march of this year. I have been having the same side effects as you but no-one has been able to tell me why. Do you find that it gets progressively worse during the day and after eating etc.It is still a huge improvement on what I was suffering so I guess I would still have it done even if I knew about the side effects. I have my life back now. I wish I was normal but I don't think im ever going to be quite the way I was. I wish you luck and hope your pain gets better or do get better or more manage
Hi Collette,
You could have the following http://www.fpa-support.org/2011/01/anesthesia-dolorosa/
Remember I’m not a doctor, it may not be, you are still early days in the recovery…and many people experience numbness and odd sensations in the weeks following MVD.
I would be calling the neurosurgeon to discuss this. Especially if he never told you he would be “combing” the nerve beforehand.
My advice talk to your surgeon and describe what you’re feeling…
(( hugs )) Mimi
First of all thanks for getting back to me. I appreciate all of the support. Yes I know the damage was not done overnight nor do I expect it to be better over night. I am just frustrated I guess because I am in a different type of pain with the anesthesia delorosa which is what my surgeon said I have from having the surgery. He did shred the nerve is what he did tell me so I am hoping I can deal with this. except it feels like fire ants in my mouth at all times and nothing has any taste except for tasting like it is to peppery. My TN pain before surgery was in my jaw line and behind my right eye to the middle of my forehead with the shocks and constant nerve flare ups. Yes I am so happy that I had the surgery and that I am not experiencing TN pan at this time possibly because my whole side my face is completely numb and I do have a lot of surgical pain and muscular pain going on but it getting better with each day and since I can now take ibuprofen that has helped a lot with the swelling. I am positive and hopeful about my future I am looking forward to a happy life and so grateful to my surgeon who in essence saved my life. I will just have to adjust to having the numbness in my face and take that day by day:) Thank you all again for the support and information. I still have a ways to go with my recovery so I will give more time too:) Collette
Collette,
Albee who had MVD at the beginning of this year also developed AD after his MVD.
He started a group here at LwTN, perhaps you can connect with him and discuss treatment options? (( hugs )) Mimi xx
Colleen…i ended up with exactly what you have in exactly the same place. Is it numb with pain? Bottom right palate of mouth? We should talk. Read on my page. Contact me.
What he did while he was in there, it sounds like, but I surely cannot confirm, is performed another procedure on you of which you did not agree to, and which will and can SURELY cause AD. That procedure would have been:
rhi·zot·o·my(r-zt-m)
n.
Surgical severance of spinal nerve roots, as for the relief of pain. Also called radicotomy, radiculectomy.
Call his office. Ask to speak to him. Ask him flat out DID YOU GIVE ME A RHIZOTOMY while you were in there supposedly removing impinging nerves and or veins? And did you do it without consent?
I would. If this is what he did and this is what you have ( AD), he just gave you a lifetime present of pain.
I had my surgery 6-25 2013 the right side of my face was numb including jaw, tounge and lips. More than three months later I can feel is improving slowly but improving.give it some time Im sure you will feel better.
I went for MVD surgery 3 weeks ago based on type 1 TN SYMPTOMS. He said my nerve has been damaged by a virus and he "cleaned it". I have no idea what that even means. I am now completely numb on that side of my face and head. Dr. said that should go away in 3/4 months. I also have burning around the eye area, up my forehead and across my scalp. My scalp feels like a giant bruise when touched. I am afraid I have been left with analgesic dolorosa in the areas that burn. I can not get a straight answer from the doctors office. All Dr. Fukushima would say is he cleaned the nerve and to be patient. I feel so confused and scared. Does anyone know what cleaning a nerve means? He said he perfected the process 30 years ago. I did not know he would touch the nerve if no compression was found. I don't know what to do or who to talk to. the only communication I have had is with his office manager by email. Any comments or experience anyone can share? I have tried asking the surgeon what he means and hos office person as well. No satisfaction. Just that it should clear-up and is normal. I don't feel normal when part of my face is just numb and parts are densely numb and burn.
JT,
I have no idea what “cleaning the nerve” means at all…I can’t believe your surgeon nor his staff are willing to explain this to you! That’s wrong in my opinion…especially if this was not discussed ahead of time. I would pursue again, and again getting an adequate explanation. I would also request a copy of the surgical report. ( it can take a few weeks to get this)
I hope you start feeling better and the numbness and burning disappears…some do experience this and it does go away…try not to worry about AD just yet…worry/stress impedes our ability to heal, makes us feel worse actually, so try real hard not too.
Huge ((( hugs ))) and many positive thoughts!
Mimi xx
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