...months after MVD questions

General General TN & GPN (Old Site)
1

Hey peeps~ I've got some things going on that I'm not sure if it's just me or what. Could you please weigh in if you have had this happen to you:

1. incision periodically swell (even up to a year later) ... 11 months for me ~

2. have pain in different places than it was BEFORE the surgery ie: mine was in lower jaw and ear, NOW it is mostly in the back of my ear, ear and cheek area

3. have difficulty with physical activity ie: going from floor exercises to standing up exercises (CANNOT do bending over or jumping AT ALL)

I'm going to my doc next week and need your help please ... I feel like when I asked my NS about these, I was dismissed... I was discharged from his care (the surgical part was healed to his satisfaction) and am to now to get a Neuro to see for anything else besides surgical help.

I've had to go back on meds for the returned pain, like some of us have. BUT these issues above ... do any of you MVD'ers have this too??

Thank you!

Cris

2

I think you are asking for other peoples symptom post-opt. I tried to list a few of the symptom I had post-opt.

It will be 11 years since my surgery this May 1st. My surgeon pinched off my trigeminal nerve because I had a blood vessel going right through my nerve instead of pressing on it like most people. I'm not sure if my experience will directly relate to you. Every once in a while I get some stapping pain in my forehead (before surgery it was along my lower jaw). This has decreased a lot over the year but it still happens. The last episode is what prompted me to signup for this forum. I was absolutely convinced my TN was coming back. Totally baseless worry of course. Though to be honest, it probably is just because my nerve is so damaged rather than TN coming back.

What may relate to you is the pain I almost always have mild pain along the lower part of my incision line. It isn't really that bad but I do still have some very minor swelling on and off after all these years. It doesn't happen very often anymore but when it does, I almost always get a migraine within a few hours of the swelling occuring. The worst is when a storm is coming through. Then I get this stapping pain in my skull but since that only happens with a bad storm, again it isn't too bad. Everything is much better than the TN pain (even the migraines). I think it took me about 1.5 years to get to a level point were things didn't change anymore. Even though my surgery was probably different than yours, I think you have a good chance of things getting better. Don't give up hope.

You are probably in better care post-surgery under someone else anyway. If your surgeon is anything like mine, they are great for the surgery (which you want) but totally suck on follow-up care. My surgeon completely dismissed my claims of decreased hearing from my right ear and the migraines I started having post-opt (I never had them before). He said he wasn't near anything that could affect my hearing. It doesn't matter that I have decreased hearing only since surgery. The surgeon never told me what to do with my eye since I no longer had any feeling in it. I ended up with an ulcer on my eye so bad that the doctor was worried I would lose my vision in that eye. Am I correct in assuming that you still have feeling in your eye that is on the surgery side? I had already lost my blink reflex before surgery. If that is the case with you, even if you do have feeling you may have problems you have to deal with. For me, I have found the best thing to use is GenTeal brand lubricant eye gel for severe dry eyes.

I hope that the pains you are having are better than what you had pre-surgery and the that the post-opt ones go away. Good luck with your appointment next week!

3

Hi Cris I am 6 month post and have similar but milder symptom. I get frequent strong but brief (seconds) pain in area of surgery and very minor TN in different places. Not on medication. Also felt dismissed by surgeon though he was very good. I have heard that symptom may come back in other places. Be strong and clear re what you want from doctors. I get told…but its better than it was before and I’m okay with this at the moment but don’t think you should be. Hope this helps.

4

Hi! Cris… I’m

5

Hi Cris!! I had my surgery exactly 2 years on March 9 on left side…I like the others still have pain some days… my tn was originally on may forehead and top of head and now sometimes feel it in my front teeth, ear and eye…my cheek gets numb sometimes… I have good and bad days, some days feels like there is nothing wrong with me and others, as soon as I wake up it reminds me its there, and feel it the whole day…is not hard pain like before but its still there… my surgeon told us that I might loose some hearing and eyesight 'cause everything is so close together, my hearing came back in a few weeks but not my eyesight, I now wear glasses its not a problem…I’m still on meds to control my pain… I’m about 80% pain free…I was told the nerve takes about a year to heal, after 2 years still waiting…hang in there…God is with us and we’ll pull through this…xoxo…

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PLS: its so comforting to read your words…and to know there is hope…11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back…but hearing from people like you gives me hope…thank you!! Hod bless you…

7

I had my MVD 2 years ago. I suffered with the swelling on my incision as well. I was unable to go off my meds even after my surgery. I can’t sleep on my left side where my surgery took place because I start to experience pain. I also still have to sleep at an incline. Laying flat on my back causes pain. My NS told me I continue to experience some pain due to the blood vessel that is attacking my nerve is crooked at the end. He says this helps the blood vessel reach around the covered area.

8

1) Incision swelling - I've had two MVDs and never had swelling; both times the incision site caves in a little bit over time, so there is a little valley along the stitches, (second MVD march last year) although the neck gland (node) does swell periodically, and sometimes gets a little sore.

2) Pain moving around. Since I first got TN about 16 or 17 years ago, I found that the pain alters its location and its character and intensity continuously. Sometimes a year of a certain kind of pain, then it seems to shift to focus on another area and the pain itself changes.

3) Exercise. I was never able to do any exercise with TN, except for walking when the pain allowed. During complete remissions, able to do any exercises.

4) Neurologist/neurosurgeon. They are not the same. The surgeons do the surgery and afterwards check that you're basically still alive, and then they're done. The neurologist doles out meds and advice and recommendations. I doubt anyone would ever be able to get either one to admit to any possible mistakes! If this is your first MVD, I suspect your surgeon did not manage to get all your compressions, or he did some damage during the operation, or both. Just my opinion.

NOTE: If a second MVD is ever offered to you, please do lots of research, because so far it seems like they're far more risky, so take care!

9

If you are not better, in three months, consider driving a little further to dr. Casey?

But of course he personally emails consultations stuff too.

He doessss aftercare more than most. He is not a god complex surgeon like most!

10

Hi Cris:

I had an MVD in 2009. Pain free for 3mths and off the meds then the pain came back worse then before. I had tightness on the side of my head, a pinching feeling near my left ear. I went to my NS twice he dismissed it. No one has told me what this is so I have this in addition to the facial pain. Sometimes I feel so sad and defeated and then I say I have to go on. I have ATN and what else can I do for this monster that has consumed my life? Sorry to go on like this, hope your pain is not like mine and you get some relief.

Cathy

11

Cathy, I think we're all so familiar with those feelings of defeat; it is a tiresome, tiresome illness that never seems to end. I can't tell you the number of times I've hit rock bottom with TN and like you, end up talking myself up and out of it again, largely because of my loved ones. I would like to ask you not to give up though. Remissions are entirely possible, and it's possible for them to be long term too. Of course, they're unpredictable, but there is hope. Also there is hope for new medical science understanding and knowledge of TN, also hope for more and different drug therapies. Besides all of these though, is to read, read, and read some more on what works for other people, and just maybe if you try something different you will get a different outcome. If all else fails, I would suggest you see a different neuro - you never know, it might help. Sometimes more relief can be had by simply adjusting the height of your pillows when you sleep at night - it could be something so simple that could make you more comfortable. I always think that if SOMEONE got a bit of relief from whatever, then it's POSSIBLE for me to get the same, so it's worth trying the simple things too, so hang in there and try to actively find your own solutions. All the best.

12

I will take them in the order you wrote them.

!. Months after the fact I would still get shooting pain that went straight up my incision. I figured it was from the nerves cut in the scalp starting to regenerate. My neurosurgeon told me the area behind the ear is full of nerves in the scalp, and it was just going to take time. When the incision swells do you get bad headaches? I am four months out from my 2nd MVD. I do not have any swelling, but am once more getting the sharp shoot pain that goes from one end of the incision to the other.

2. TN pain can, and often does shift. I ended up getting it in all 3 branches. Did the surgery have something to do with it? Hard to say. Due to complications during my first MVD, I was on the table for 7 1/2 hours, with my head stuck in the neck stretching position they use to position your head for surgery.. I ended up with ON for 7 months as a result.

3. I have balance problems due to a movement disorder, so I fear I am not the one to answer this. I do know though the balance problems did get worse after surgery due to swelling, but 11 months does seem a long time to still have this issue

I was just telling my partner, that after reading your post, how blessed I have been to have neurosurgeons who have never blown off my concerns. The only reason I have had two neurosurgeons, is my first one left the state. I had a great neurologist, but she also left the state, and my primary care doctor does my medication follow up. It took a lot of knocking on doors so to speak before I found the good doctors, but they are out there.

13

I’ve had 2 MVD’s & the last one was successful & 15 months ago. I had a deep depression the 1st time & the NS fixed it the 2nd time( different NS). I’ve had some sensitivity on the incision site with my sunglasses temple & hats. I live in AZ& wear both when I play golf & finding I’m going to have to choose 1 as both are irritating the incision. The incision has changed a bit and my swelling is gone & feel a slight depression in the middle. I only touch it when it’s getting irritated, the top of the incision feels slightly sensitive too again not all the time.
My 2 nd was more challenging for the surgeon ( lots of scar tissue) but so glad he proceeded as I’ve been pain free this time! My NS is Dr Sanan in Tucson & found him through the Facial Pain Assoc & he’s patient, understanding & a magician! I highly recommend him!

14

I am 17 months post MVD and I have had great results. Some pain at the incision site and up until 6 weeks ago, no TN pain at all. Now, out of the blue, I am feeling the quick, sharp pains behind my left eye that I felt before. This was the fist sign of the impending hell that was to come. I have an appt. with the neurologist next week. I have been completely off meds since Dec. 2012. I am so scaredthat it is on the way back and I am defenseless once again. Praying for peace for everyone.

15

Cris, I had my MVD 16 years ago behind my left ear and I still have pain where the indention behind my ear is. I am not sure if it is from scar tissue but this is what I am being told. When my doctor did the MVD he cut my nerve and removed 60% of the nerve so the left side of my head and face is numb. My pain is no longer localized, now it seems to jump around from the top side of my head, face, behind my ear, jaw , and in and behind my eye, all on the left side. I have pain EVERY day from a level 3 to a 10. I have tried every med you see anyone else mention including giving myself shots of morphine to no avail. Every time I tried any opiate I would get sick to my stomach so now I am on NOTHING. The only relief is when I can sleep. I try to exercise when my pain level is low but sometimes it increases if I do to much. I will pray for your pain to subside and I wish you well. Another thing which helps me is prayer, reading my bible and just talking to my Lord . I hope this does not discourage you. God Bless, John

16

I had my MVD in October of 2012..I have very little to no pain at all now,but the first year was weird to say the least.

As for the incision,mine still will itch like nuts on occasion, and here's the really weird part, when its humid out, the indentation is bigger than when it is cold out. Its crazy , but other people said it happens as well. My head has a teflon screen with medical putty, not my skull piece and I think thats why its doing that. It makes sense it expands and contracts with hot or cold, but it is freaky!! It doesn't cause pain, I just notice it more.

I had the boring ear pain, tooth pain, and lightning strikes before surgery, but since surgery I occasionally get the pain in my eyeball that is nasty as hell. Something else caused the TN in me, and after over a year of going to Hopkins and other top doctors, they have all come to the conclusion that I have a disorder they have never seen before...YAY ME

(sarcascim) so whatever I have, causes some of the a-typical pain, but it is very very rare anymore.

As for physical activity, whatever is going on with me gets worse when I walk or anything, so I have no idea how I would react without that...so I can't really give a good answer, but I will say, if you had TN for quite some time before surgery and been on the meds, I could see how it would be a slow road getting back to normal.

I also have a numb spot, or should I say sensitive spot right over the top of my ear, it gives me a weird feeling so I do everything I can not to touch it, that feeling has never changed since the surgery. I think we all have different things going on and different ways of healing as well,

Hope I helped some and that you are well today

Wendy/crashgirl

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I was worried I was being too depressing. Glad it was helpful rather than depressing :-)

Even when I'm having a really bad migraine, it isn't a drop in the bucket to how much pain I was in before. Before I had my surgery, I hadn't been able to brush my teeth in two months. The last time I tried, I ended up in the hospital for a week just trying to get the pain under control. Just writing about this is making me cry. My friends keep telling me I have PTSD from TN. I hope you get used to how things are with you now. It isn't that I don't have pain but it is so much less that I've gotten used to it and just ignore it. I could have never done that before the surgery.


Delia Osuna-Orozco said:

PLS: its so comforting to read your words...and to know there is hope..11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back....but hearing from people like you gives me hope...thank you!! Hod bless you.....
18

Hi PLS, I'm really glad you mentioned the PTSD thing, that's EXACTLY how I felt after 7 years of agony and then suddenly pain free after my first MVD. It's worth mentioning because I was totally unprepared for it, and it might help others. I found that learning to cope with life after TN was a slow process and you go through all sorts of stages, from pure gratitude, to doubts that you ever had TN in the first place, to fear of doing anything in case you set it off again, to amazement that you survived it, to anger and grief at the pain you suffered and the time you lost, the whole gamut of PTSD, and your feelings do tend to see-saw a lot, and few people seem to talk about that.

I also think it's great that you've highlighted that while you still have pain post surgery, for you it's so much more bearable than pre-surgery. Some people unfortunately do not emerge from surgery completely pain-free, and whilst we tend to hear almost nothing from the pain-free ones who tend to get on with their lives quickly, we hear more from those still in pain, and I think it's important that you have put your pain in perspective. It's an important beacon of hope for others contemplating surgery, even though some might not be so lucky. Thanks for sharing!

PLS said:

I was worried I was being too depressing. Glad it was helpful rather than depressing :-)

Even when I'm having a really bad migraine, it isn't a drop in the bucket to how much pain I was in before. Before I had my surgery, I hadn't been able to brush my teeth in two months. The last time I tried, I ended up in the hospital for a week just trying to get the pain under control. Just writing about this is making me cry. My friends keep telling me I have PTSD from TN. I hope you get used to how things are with you now. It isn't that I don't have pain but it is so much less that I've gotten used to it and just ignore it. I could have never done that before the surgery.


Delia Osuna-Orozco said:

PLS: its so comforting to read your words...and to know there is hope..11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back....but hearing from people like you gives me hope...thank you!! Hod bless you.....
19

Cris, although you and I have already spoken, I thought I’d add my post MVD “stuff” to this post as well…it’s turning into an informative post for post-MVD comparison.

My MVD was April 9th, 2013, almost a year ago…

  • I occasionally get itching at the incision site but no swelling.
    ( an acrylic piece was used to replace what they removed)

*pre-MVD my pain had changed and moved around.
*post-MVD I experienced “new” area, upper branch, above my eye as well as behind my ear electric shock down into my neck.
I had no TN pain after surgery, was able to wean off 2/3 meds, experienced 4 months tn pain free before it returned and increased.

  • as my TN worsened pre-MVD I could no longer do any form of cardio without it increasing TN pain
  • post-MVD I experienced pressure type pain above incision in back of my head while driving or walking ( cardio) . My neuro attributed this to muscle tightness as things were healing inside, he suggested massage therapy and this did help.
    I can only do minimal cardio ( 2.5 minutes on stationary bike, or slow walk) post MVD without it increasing my pain.

As someone else mentioned, Neurosurgeon did surgery, after care was left to my neurologist, yet my Neurosurgeon or his assistants have responded to my calls or emails. ( had surgery in different province )
They do want me to keep in touch and inform them of how I’m doing.

My current status at 11 months post-MVD;
Pain is not under control, on 3 meds, trying to find balance of minimal pain and least amount of “drugged-up-ness” not working, not driving, not functioning much…
Incredibly, this is still better than pre-MVD where it was worsening and pain was 24/7. I do get hours with no to minimal pain now.
Good luck at your appt. Cris!
(( hugs )) Mimi

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I think I suffer from PTSD …read about it and have some symptoms, never heard of it…I live in Mexico and I don’t know anybody around here with this sickness, so when I found this site immediately join…it help me a lot…PLS I have some of your symptoms … like itching in the incision… little shocks in my head, when it rains or its too cold my head feels like its hollow…I try not to worry about it but its very hard not to…my Dr gave me Clonapin it seems to help …I say to myself every day is a new day try to make the most of it…my family and specially my grandchildren are my strength and want to enjoy them, I pray to God to help me deal with this and to give me strength to go on…let’s all keep in touch to talk about our aches and doubts… I think that talking about it helps…