I had MVD surgery on Oct 19 2012, and contracted meningitis, I was sick for a little over a month, but then was pain free in my face. Then around the 1st of Feb my face started hurting again a little and a little. Now Feb 27th.. The pain is so unbearable, its taking my breathe away... Im on topamax 100 mg, and oxcarbamazapine 300 mg and baclofin 30 mg a day.. and ive been taking tylonol constantly.. nothing seems to be helping... im so broken hearted.. For about 2 months, I felt like my old self, no pain, I restarted school, worked really hard at my job, and had my life back.. now, im struggling again to make it through the day.. I just dont know where to go from here.. any suggestions?
Bless your heart! Maybe it's just a little backset. Sometimes the pain will resurface again during the first year because the nerve hasn't settled down. This is according to KC Dancer KC. Message her and see what she says. I will be praying for you to get relief. Keep me posted.
I am so sorry to hear that you are in pain again and hope that you find relief soon. What does your surgeon say? After my MVD, I was told that some pain may return for a period of time. So far, I am okay but like others, live in fear of the pain coming back. It is so sad to hear when it happens to others. I wish you pain free days soon.
I totally understand! My MVD was OCT. 26,2011
Weeks 11-16 I had to go back on low dose of meds -- but still MEDS-- felt defeated, PTSD, depression, hopeless - But I had not waited that "golden 1 year mark" - and it eventually subsided. Coming back to bite me just now at 16 months - about 5% is back
What is the attitude of your surgeon? Neurologist? You can always have another MVD after the one year mark -- I'm sure that is the LAST thing you want to do -- but find out the medical odds of getting that sick again with meningitis...... I would want to know the odds
I would think its possible your infection might have set you back -- don't panic too much till Oct. 2013!
In the meantime -- ASAP call any of your doctors and have them call in a prescription for lidocaine patches or cream for your face (patches work 12 hours)
If inside your mouth hurts - Lidocaine mouthwash
Some people even get a prescription for lidocaine nose spray !!
Please don't give up that this too shall pass --- I wouldn't eat tylenol anymore if it is not doing anything-- I would perhaps ask your doc for low dose clonazapam --- double whammy helps with anxiety - chills you out a little - takes the edge off pain too because the more stress you feel the more pain you will have!
Keep Posting!!!!!!
Kc Dancer Kc said:
I totally understand! My MVD was OCT. 26,2011
Weeks 11-16 I had to go back on low dose of meds -- but still MEDS-- felt defeated, PTSD, depression, hopeless - But I had not waited that "golden 1 year mark" - and it eventually subsided. Coming back to bite me just now at 16 months - about 5% is back
What is the attitude of your surgeon? Neurologist? You can always have another MVD after the one year mark -- I'm sure that is the LAST thing you want to do -- but find out the medical odds of getting that sick again with meningitis...... I would want to know the odds
I would think its possible your infection might have set you back -- don't panic too much till Oct. 2013!
In the meantime -- ASAP call any of your doctors and have them call in a prescription for lidocaine patches or cream for your face (patches work 12 hours)
If inside your mouth hurts - Lidocaine mouthwash
Some people even get a prescription for lidocaine nose spray !!
Please don't give up that this too shall pass --- I wouldn't eat tylenol anymore if it is not doing anything-- I would perhaps ask your doc for low dose clonazapam --- double whammy helps with anxiety - chills you out a little - takes the edge off pain too because the more stress you feel the more pain you will have!
Keep Posting!!!!!!
ANGIE : WHATEVER YOU THOUGHT YOU POSTED DID NOT COME THRU - TRY AGAIN : )
Kc Dancer Kc said:
I totally understand! My MVD was OCT. 26,2011
Weeks 11-16 I had to go back on low dose of meds -- but still MEDS-- felt defeated, PTSD, depression, hopeless - But I had not waited that "golden 1 year mark" - and it eventually subsided. Coming back to bite me just now at 16 months - about 5% is back
What is the attitude of your surgeon? Neurologist? You can always have another MVD after the one year mark -- I'm sure that is the LAST thing you want to do -- but find out the medical odds of getting that sick again with meningitis...... I would want to know the odds
I would think its possible your infection might have set you back -- don't panic too much till Oct. 2013!
In the meantime -- ASAP call any of your doctors and have them call in a prescription for lidocaine patches or cream for your face (patches work 12 hours)
If inside your mouth hurts - Lidocaine mouthwash
Some people even get a prescription for lidocaine nose spray !!
Please don't give up that this too shall pass --- I wouldn't eat tylenol anymore if it is not doing anything-- I would perhaps ask your doc for low dose clonazapam --- double whammy helps with anxiety - chills you out a little - takes the edge off pain too because the more stress you feel the more pain you will have!
Keep Posting!!!!!!