Mom had MVD surgery 8 weeks ago, severe head pain, can't sleep....looking for help!


I am a very concerned daughter and I'm looking for answers for my mother to help her as she continues on through her tough recovery after her MVD surgery.

Her story:

My mother has Atypical TN. On 6/11/13 she had MVD surgery. The surgeon said she had both a vein and blood vessel resting on the nerve and felt that he had successful separated these from the nerve. However, 8 weeks post surgery, her symptoms continue to get worse (she really has only had a couple of days of relief here and there). She has severe head pain, neck pain, ear pain and is not sleeping through the nights. She has had 2 rounds of steroids which have helped, but once she is off, the pain emerges again. She also still has some TN pain on top of the constant, severe head aches and other pain. Her NS claims that having performed 1000 of these, he has never had a patient with such symptoms yet I read a couple of blogs on this site that point to similar symptoms she is experiencing. He is sending my mom to a neurologist for a lumbar puncture to test spinal fluid for “inflammatory cells”. Both neurologist and NS are very casual about this with no sense of urgency yet my mom is unable to sleep at night or function during the day. She is a teacher and will be unable to return to work this month and her quality of life has diminished considerably since the MVD.

Some questions:

Will she feel relief at all after the spinal tap?

Is there medicine to take in the interim while waiting for the consultation w/ Neurologist and appt for spinal tap? (She takes Advil regularly, but that isn't enough to help the pain). Either over the counter or prescription.

Did your surgeons have a casual approach post surgery, despite being in so much pain?

Are the symptoms she is experiencing a normal part of the healing process?

Any idea what the 'normal' recovery time is for this surgery?

Did those who had the severe head pain recover over time?

Any guidance, advice, etc. you can provide would be greatly appreciated!! She is in a great deal of pain, can't do her normal activities, can't sleep...she needs some help!

Thank you in advance for ANYTHING you can provide!

I wish I could help, but we're new to this, my moms got it too, and she isn't even at the point of MVD yet. Maybe your mom should stay on the TN heavier meds, until more time passes? Try the MVD group sessions, they may be able to help you there. Good luck to you guys, I wish you all the best.

Hi concerned daughter,
I’m so sorry to read of your Moms current situation.
First, if she’s experiencing all that pain, she needs to get something stronger.
Is she still on meds for TN? Advil won’t cut it, pain needs to be relieved first and foremost, call doctors office and stress that she is in pain crisis and needs something stat!
I had MVD on April 9th, 2013.
To answer so e of your questions,
No my surgeon nor my doctors were casual about anything. Because I had my surgery out of town, I saw my GP for any immediate concerns and my neuro to discuss my meds.
Some of the symptoms she is experiencing are common, the neck and head pain as well as the insomnia. I didn’t have ear pain but we all experience things differently. My ear felt plugged with water and I had reduced hearing for about 3 weeks.
Normal recovery varies, but on average “they” say 4-6 weeks, but in my experience my doctor and neuro surgeon say it takes a full year to completely heal and recover.
I’m 4 months post op, I still feel a light pain, pressure type feeling in my head at times and I have very low energy. Occasionally I feel twinges of TN pain like the beginnings of TN but it never goes any further.

My advice is to see the doctor ASAP. She needs pain relief medication.
This will help her to sleep as well.

Please let us know how she’s doing.
(( hugs )) Mimi

I agree with Mimi, your Mom needs pain medication. After my 1st MVD I was given pain meds and Baclofen (muscle relaxer). The combination of the two helped tremendously. My surgery took nearly 5 hours and I had a vein wrapped tightly around the trigeminal nerve.

Another help: I laid down with my head above my in a recliner or with my head propped up in bed.

My NS recommended neuromuscular massage which I had twice a week to help my facial and neck muscles re-learn how to relax. My more severe surgery pain lasted nearly 3 months and it was 6 months until I started feeling like a "regular" person.

My surgeon was a great help, but getting to him was a problem as his PA intercepted most messages and wanted to make light of my problems. So I simply made an appointment with the surgeon to bypass her.