I had my MVD 8 days ago today and whilst I have not had any severe TN pain I do have some occasional face pain but nothing of which is unbearable and I am completely off my meds!
The Op itself I understand went very well, I was in theatre for 4 1/2 hrs and 3 vessels (1 large and 2 small) were found to be pressing onto the trigeminal nerve (left side).
The pain for the first few days was like a hangover from hell type pain and was all over my head, particularly at the front and lower back/neck, it wasn’t helped that I was very dehydrated and was sick every time I moved, and everytime they gave me pain killing meds (orally) I was immediately sick which meant that for the first 2 days I had very little pain relief apart from soluble paracetamol which was administered via IV. This could be avoided if my hospital had a different policy for pain control which I didn’t even think to ask about pre surgery.
The sickness stopped day 3, but even today 5 days later I still suffer nausea.
Day 3-6 suffered terrible lower back pain and also pain in my left thigh but this has now gone. I also have dizziness.
Day 7 - 31 staples were removed, I was dreading this but apart from a couple it wasn’t as bad as I expected it to be.
Day 6-8 substaintally reduced the oral pain meds and have only taken 2 tablets for the last two nights to assist me in gong to sleep, which has proved problematic as I usually sleep on left side which is where I had my Op. I still have some dizziness when standing, nausea as well as a weird tingeling sensation in the whole of my left side of my head and what I can only explain is like a wind blowing sensation in my left ear but this isnt constant. I do have pain but it is bearable. All of the symptoms I have experienced I have read that others have also experienced so I am pretty relaxed that this is the norm.
My neurosurgeon warned me that progress is slow and if you try and do too much too soon the symptoms you experience will be more severe. I have tried to follow his advice but overdid it a bit yesterday and felt quite I’ll last night so had a day in bed today resting up which has defintely helped.
I was told that full recovery will take 6 months and I don’t doubt that now but it’s not as bad as I thought it would be and in my opinion 1 week on post op the risks/recovery of MVD was definitely the right decision for me. I will write again and hope this provides others who are thinking of MVD or just gone through it what to potentially expect.
So great to hear from you Quickie!
I’m glad you are resting and recovering now and that things went well.
I sleep on my left too ( left sided mvd) and have found it difficult not being able to lay on that side.
I’m in week 4 and finally able to lay on that side for short periods. : ) I’m also feeling more energy.
Wow you’re completely off meds, that’s great!
Slow and steady girl! Wishing you continued well being.
Take care of you, Mimi
I started reducing my meds as soon as I made the decision to have the MVD as I felt that I needed to feel the intensity of the full TN pain to convince myself MVD was the right thing, so it was a gradual process and I was down to a low doseage of Oxycarbazepine when I was admitted and with all the sickness couldn’t take the low dose even if I wanted too.
I have been reading your discussions and words of encouragement to others MImi, you are a great inspiration.
All the best with your continued recovery.
X
Mimi said:
So great to hear from you Quickie! I'm glad you are resting and recovering now and that things went well.
I sleep on my left too ( left sided mvd) and have found it difficult not being able to lay on that side.
I'm in week 4 and finally able to lay on that side for short periods. : ) I'm also feeling more energy.
Wow you're completely off meds, that's great!
Slow and steady girl! Wishing you continued well being.
Take care of you, Mimi
Hi Quickie,
Thanks for the report. I’m hoping to have MVD too and so it’s encouraging and so helpful to read of others journeys. Wishing you steady progress.
Peace and Happiness
Bellalarke
Congrats to you Quickie, sounds like your on a positive path to recovery. Recovery is important, just don’t push too hard. Body will tell you it will put the brakes on. Awesome your off your meds, thats encouraging. Good for You!
My Best
Joannexo
Thank you for your encouraging responses, each day I feel better but you are all right I do need to keep telling myself to slow down, just so enthused that I no longer have TN pain and that I may have just got my life back!
Good news you seem to have there, Quickie. I sometimes wish I had been advised to do MVD. My surgeon was big on GK, so I had a GK in 2000. For me, it was great. I went 9 yrs with no pain. None. Then WHAM. Electric shocks like machine gun fire. Back to the surgeon. Gave me the newer CK in 2010. The big stuff is gone but I have very significant numbness, still have pain that is "managed" as good as I guess it can be with Oxycarb.. and Lyrica. I often wish I had had the MVD but my neuro is not sold on it. So, it does depend a lot of WHO you see and what that neuro and NS believe in. I've been told now that I'm not a candidate for MVD. I'm glad yours is working out. Do whatever that NS says and nothing more. Do not think you can do more. Normally those guys know way more about the human body than you. I say "normally" because sometimes doctors just don't spend enough time with you on a visit to let you talk out everything you have to say. Good luck with the MVD. I envy you (I think). :)
Thanks Jimmy for your kind response. I spoke to several NS and in the UK none recommend GK, I don’t know whether this is because my MRI showed the compression and also because whilst I had electric shocks I also had ATN pain which would at times last hours when triggered. I completely agree we are all very much persuaded by WHO we see, the NS I went with had a dreadful bedside manner but is a leading expert in TN in the UK and now from my experience I truly believe is a gifted surgeon (he also had the best success rate with MVD). Have you considered seeking alternative advice from another NS to see whether they agree with whether you arent suitable for MVD?
Hope you do find something that works for you!
Jimmy Works said:
Good news you seem to have there, Quickie. I sometimes wish I had been advised to do MVD. My surgeon was big on GK, so I had a GK in 2000. For me, it was great. I went 9 yrs with no pain. None. Then WHAM. Electric shocks like machine gun fire. Back to the surgeon. Gave me the newer CK in 2010. The big stuff is gone but I have very significant numbness, still have pain that is “managed” as good as I guess it can be with Oxycarb… and Lyrica. I often wish I had had the MVD but my neuro is not sold on it. So, it does depend a lot of WHO you see and what that neuro and NS believe in. I’ve been told now that I’m not a candidate for MVD. I’m glad yours is working out. Do whatever that NS says and nothing more. Do not think you can do more. Normally those guys know way more about the human body than you. I say “normally” because sometimes doctors just don’t spend enough time with you on a visit to let you talk out everything you have to say. Good luck with the MVD. I envy you (I think).
Quickie, yes I did. Last spring I drove to Pennsylvania from Alabama to do just that. The NS told me my T-nerve had actually "shrunk". I didn't think to ask but I assume it was from the two radiation treatments of GK and CK. He said he could do nothing. Recently I have decided to see another neuro for their opinion. This same neuro was the dr. for a lady in my church with TN. That neuro immediately recommended a NS. The lady had the MVD and is fine today with no symptoms at all. In fact, she woke up with no TN pain at all, just the surgery pains which is understandable. I think her case went remarkably well, probably better than average. Nevertheless, you can see why I want another opinion from her neuro and then see what happens after that. I am not saying that I cannot function because I can. I just put up with a lot of ongoing tingling, some mild shocks, etc. - all the time, with some days not so good, some days good, and some in between. But,,,,,,,,,,I am daily on 900 mg Trileptal and 225mg Lyrica which masks the worst of it. Thank God the meds are available. I can function. I can go on with a normal life....I just have to put up with this junk - and the meds. I talked to Red Lawhern on the site about all this. He told me if the GK or CK worked at all I was in a very small community of success with the GK. He's probably right. Maybe that's why they opted for the GK to begin with 13 yrs ago. Who knows? He also was familiar with the NS I saw in Pa. and if that NS told me no on the MVD he (Red Lawern) felt I should take that to the bank. At least I am functionable and most people cannot tell I even have TN. But, as you well know, they have NOT seen the sledgehammer of pain hit me at level 10 on a 10-point scale. I'll probably add an update on my page after I see that neuro in July.
All the very best Jimmy and I hope you do receive positive news in July.
Jimmy Works said:
Quickie, yes I did. Last spring I drove to Pennsylvania from Alabama to do just that. The NS told me my T-nerve had actually "shrunk". I didn't think to ask but I assume it was from the two radiation treatments of GK and CK. He said he could do nothing. Recently I have decided to see another neuro for their opinion. This same neuro was the dr. for a lady in my church with TN. That neuro immediately recommended a NS. The lady had the MVD and is fine today with no symptoms at all. In fact, she woke up with no TN pain at all, just the surgery pains which is understandable. I think her case went remarkably well, probably better than average. Nevertheless, you can see why I want another opinion from her neuro and then see what happens after that. I am not saying that I cannot function because I can. I just put up with a lot of ongoing tingling, some mild shocks, etc. - all the time, with some days not so good, some days good, and some in between. But,,,,,,,,,,I am daily on 900 mg Trileptal and 225mg Lyrica which masks the worst of it. Thank God the meds are available. I can function. I can go on with a normal life....I just have to put up with this junk - and the meds. I talked to Red Lawhern on the site about all this. He told me if the GK or CK worked at all I was in a very small community of success with the GK. He's probably right. Maybe that's why they opted for the GK to begin with 13 yrs ago. Who knows? He also was familiar with the NS I saw in Pa. and if that NS told me no on the MVD he (Red Lawern) felt I should take that to the bank. At least I am functionable and most people cannot tell I even have TN. But, as you well know, they have NOT seen the sledgehammer of pain hit me at level 10 on a 10-point scale. I'll probably add an update on my page after I see that neuro in July.
