Dear friends,
I have had right side typical TN in V2 section since 2003 i.e. almost 10 years. I got operated on April 15th 2013. I a few days back I had posted a detailed report on my MVD-
My experience with MVD- a detailed report
I wanted to put a post with my recovery process and keep updating it as weeks roll by. So here goes-
Take it with a pinch of salt
I have been reading experience of other people on their MVD and have found that the recovery experience and rate of improvement is different from people to people. The advice given also varies from neurosurgeon to neurosurgeon- some tend to be more careful while others advise the patient to do activities earlier than others. For example, some patients go home on the very next day of the surgery while others after 4-5 days.
My neurosurgeon, Dr Jayadev Pachwagh (India), mentioned that I can go back to work after 3 weeks. The numbness will take few months to go.
I must also add here that I feel that my recovery has been fast, maybe due to my relatively younger age (43 years- not that young too) and that I do not have any other complications like sugar or blood pressure problem etc.. I go for walks regularly so am relatively fit that way.
Few tips for a good recovery
Based on advice given to me by others, my own experience and what I have read I list here some points which might help in the recovery
- Go with a positive frame of mind into the surgery. What will be will be- why worry about it. Much worse things have happened to humans compared to TN so don't worry.
- Nobody likes to stay in the hospital but rather stay a few days more at the hospital than less. At home as one is familiar with things one tends to get involved more e.g. doing small household chores, reading the newspaper, attending the phone etc.. This is not so in the hospital, there focus is only on rest and recovery.
- In a surgery there is the external wound (the cut and sutures) which one can see and then there are the inner changes done which one cannot see. The outer wound heals faster but one should not be mislead by that to assume that everything has healed. The inner part takes more time so don't rush it.
- In the post-op period one should put minimum strain on the brain. So for atleast first week it would be good to not do any reading, watching TV or working on the computer. In second week depending on how you are feeling you can start a little at a time but not much at a stretch.
- Eat healthy. Avoid junk food and food which is difficult to digest.
- After first week, again depending on how you feel, would be good to go for short walks and get some fresh air. But do not over do it or exert yourself.
Note: Above are general points, depending on how you actually feel and advice given by your surgeon you might want to modify the points mentioned above.
First few days after surgery
I was moved to ICU for a day after surgery. First two days were difficult- I could not get up on my own and needed support, could not take in liquid or solid food, was vomiting, unable to get much sleep. But each day there was remarkable improvement.
I was then moved to an ordinary room and was in the hospital for a total of 5 days. I was able to get up on my own and go for short walks after 3 days. Could take liquid and then solid food within these few days.
I had numbness on the right side of the face and area near the right ear. I also had hearing loss on right side- I could hear but much less compared to left side. I was told that hearing these two are due to the surgery and I need not worry as they will go away. I evenings I couldn't stand the light and preferred to be in darkness. On some days got bad headaches.
I stopped taking Tegretol immediately after the surgery.
Second week after surgery
Doing well. Have started to walk for say 1 mile in the evenings. The sutures were removed after ten days from the surgery. The wound had healed well. The cut is not visible much (contrary to what one may expect). The numbness has reduced a little and hearing loss has reduced significantly. But there is some heaviness near the right ear. When I get up from lying down position then some strain comes on right side where the surgery related cut was made.
Note: For these two weeks I tried to not strain myself- no reading, no TV and no working on the computer.
Third week after surgery
Doing well here too. Started morning and evening walks. Can work on the computer initially for few hours. Only precaution to take is not to drive as there might be a problem with balance (dizziness). Otherwise no major restrictions. After third week I can go to office and work full time, but I will initially work just for 2-3 days a week.
The numbness on right side of the face has not reduced much compared to second week. I guess this would take time. Hearing is almost to my left side.
I visited my friend who lives on the 9th floor and was able to take the stairs and walk up. Had to physical problems due to this. I have, against my surgeons advice, started to drive for short distances of about 2 miles.
I have, touch wood, not had any TN related pain since my surgery. I can brush my teeth, rub my face when I wash it etc.. Feels good. The fear of the pain coming back is there, but people have advised me to forget the past and throw away the fear and live in the moment. I can not do anything to prevent the pain from returning (say after few years) and so need not worry about it.
Six weeks after surgery
There has been good recovery all around. There have been no TN related pains since surgery. The physical impacts of the surgery are healing.
The numbness on right side of face has reduced a lot. There is yet some numbness left though- in a small area on the right side of the tounge, behind the right ear and a little on the right chin and cheek.
At the place where the the hole was made in the skull is now filling up. The bone seems to be growing back. The small depression in that area is yet there- I think it would remain even after the bone fully grows back. But this and the scar of the cut is hardly visible. In fact, just a few days back I showed it to my sister and she asked me whether I was operated on this side of the head or the other side; that shows that she could hardly make out.
Sometimes at work I get mild headache but I do not think its related to the MVD surgery.
The only precautions I take is to not do activities which can cause bumping motion to the head like jogging or jumping. I get a good feeling that I can do these activities but I resist just to be on the safe side.
9 months after surgery
Absolutely no TN related pain from the day of the surgery- what a relief that is!
A small degree of numbness is yet there around the right ear and on a few millimeter sized area near the tip of my tongue. Both of these do not cause any limitations in my day to day working. Its not that sensation in these areas is lost- even if someone touches it lightly I can feel the touch.
I some times get involuntary jerks- like getting startled by someone suddenly poking my ribs. The jerk is very mild and cannot usually be noticed by others. Sometimes others can notice it. Frequency varies a lot and sometimes can be a dozen times a day. This again does not cause any physical limitation. I am not sure if this is related to the surgery- my surgeon thought it is not. But I did not have this before the surgery and got it immediately after it, which makes me feel its related to the surgery.
Other than the above minor side effects there are no problems. I do not need to take any TN related precautions- I can freely brush my teeth, gargle my mouth, eat an apple whole without slicing it etc.. So overall my family and I am VERY happy with how things have gone :) and yes- no taking any TN medication.
Close to two years after surgery
Totally free of TN! I can't yet believe that the pain is gone. MVD has worked like a miracle for me.
The numbness around the right ear has gone almost entirely. The numbness on my tongue is yet there but it is hardly noticeable. I can feel it only if I put my attention there, so its a harmless thing.
Some useful experiences shared by others
I found these discussions quite useful-
This one is the best I have found, This peson has taken the trouble to update it till 2years post the surgery
http://neurotalk.psychcentral.com/thread2052.html
This one covers just few days post surgery but useful none the less
http://painintheface.blogspot.in/2009/10/mvd-surgery-completed.html