One week post MVD

Back home from the hospital after 5 hours of brain surgery, 48 hours in ICU and 5 days on the neurosurgery ward.
I had 17 stitches removed from my head this morning.
But… no more TN!

The NS managed to fix one large vascular compression that was pressing against the trigeminal nerve, as well as an AVM/arteriovenous malformation (blood vessel plus artery sandwiched together), also pressing against the nerve.
The latter is a very rare cause of TN (about 1% of cases).

The whole experience was not as bad as I had expected.
I was very happy to be first on the doctor’s list that Monday morning.
Another pleasant surprise was that the anesthetic did not involve any masks at all but was administered through an IV drip.
It was actually really nice, like gently falling asleep. Very relaxing.

I woke up in recovery, feeling nauseous and with a huge migrainous headache.
The nurse offered me some ice chips, which shocked me, but when I accepted them, I discovered the ice no longer caused shocks in my teeth!

When I was fully awake, I was brought to the high dependency ward, where my husband came to visit me. I was glad to notice they had not put in a urine catheter and could just use a bed pan. When my husband left, I did feel a bit scared, as I was lying in a large single room, attached to all sorts of tubes and machines, with nurses silently walking in and out. I did not have a button to call the nurses, but was closely monitored through a window.

During my stay in ICU, I felt very nauseous, had to throw up a couple of times, was not able to eat much, drank huge amounts of iced water, was in a lot of pain and hated lying on my back. I also started bleeding from my ear. A CFS leak was suspected and on the second day I was brought down for a CT scan. It appeared to be surgical blood and fluid leaking through the ear. A lumbar puncture was deemed too risky, so that was that.

After two days in ICU, I was brought to the ward. I had to share a room with three other people (public hospital). It was very noisy and hot, since the airconditioning was no longer functioning while it was on average 30-35 degrees outside… One of the ladies in the room clearly had mental health issues and was constantly screaming. She also ‘opened her bowels’ in her bed…

When my husband came to visit, he asked whether I could be moved to another room, as I was suffering from bad migraines. Luckily, another spot was available and I was swiftly moved to a more quiet place on the ward, where I spent the rest of my stay in hospital.

On the fourth day, my ear stopped oozing blood and fluid. The NS came to see me every day and was very kind and reassuring. I was also attended to by a physiotherapist and an occupational therapist and was encouraged to get out of bed and walk rounds on the ward. I continued to marvel at the fact that the facial pain had simply disappeared and even enjoyed the hospital food, especially ice cream for desert.

After 7 days, I was discharged from the hospital, now two days ago. The postsurgical pain and stabbing ear pain is still just as bad.

I am taking Paracetamol, Oxycodone and Targine for pain relief.

Still extremely happy the facial pain is gone but…
suffering badly from incision pain, neck pain and migraines.
Worst of all, the stabbing ear pain I already had before the procedure (since January 2016) has become even worse and my ear has started bleeding again this morning.

I also have this terrible pain in my right leg, feel dizzy, slightly nauseous and easily lose balance. I have tried walking around the house a couple of times, but it’s tough, as it makes my headaches worse. I also have double vision (possibly due to the medication, which I am still taking), tinnitus and cannot hear a thing on the left side. My ear is still completely stuffed.

The NS did not seem too worried about my ear and reassured me that it was all a matter of time before everything would be healed and the pain would subside.

Sleeping is an absolute nightmare.
I hate sleeping on my back (I’m a side sleeper) and the pain gets a lot worse at night.

I do hope this is all perfectly normal and temporary.
Only time will tell.
I still believe I made the right decision to go ahead with MVD.

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Congratulations.Thank you for your post.I am hoping some of the people who have had MVD’s come on and share what it was like for them post-surgery.
You are a brave,strong,soul.

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Wishing you a speedy recovery.

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Glad to know all went well for you and that you had a pleasant anesthesia experience (the way it should be!). I remember having horrible incisional and headache pain post-op too. Seemed like forever until it went away…but it eventually does. Sometimes even now (and it’s been 10 years since my second MVD) I get pain in my neck and skull region if my stress level goes up. Tension causes those muscles to tighten up so much that they give me skull pain and HA. I found that warmth, gentle massage and relaxation help immensely.

Hang in there…healing takes time and seems like it will never be complete…but it does happen. Listen to your NS’s advice. Get lots of rest and be careful not to fall. Please use help when walking if you feel unsteady. You might try sleeping with your head slightly elevated…like if you were in a reclining chair (you can make a wedge of pillows or actually buy a foam wedge). It seems to make back sleeping easier.

Glad to know your TN pain is gone. The other stuff just takes time.
Wishing you all the best for a complete recovery. Keep us posted.

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Oh, you are positive and that is the best medicine mow. Rest up, go slow and you will feel better. A lot of your balance and ear symptoms are from leak. Stay on top of this. Do not want an infection. Ear pain is not a normal gotta live with after MVD. Keep complaining!

Blessings,
J

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Such good news. I remember when I had my MVD, one of the first few in my hospital back then, when I woke up I was suddenly aware of no pain! what a relief. I hope your other current difficulties heal well soon.

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Hi, I had the same thing about a month ago now. I have lost the hearing in my side that the operation was on, i have lost my taest, I have no feeling in the right side (the operation side) and I can not hold the food in my mouth because I can’t feel my face. I hope you are getting better and have no complications that don’t go away. Best to you

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Wishing you complete recovery and freedom from pain as soon as possible! Can you share the name of the neurosurgeon and hospital?

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Dr. M. Dexter, Westmead Hospital, Sydney, Australia.

Thank you. Best wishes for a healthy and prosperous New Year!

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I’m about two years post mvd and I had a lot of post surgery problems, (taste, double vision, walking problems, TMJ, pain when swallowing, etc). When my Neurosurgeon wasn’t concerned about the side effects that’s when I stopped worrying bc he was one of the best in the country. It took about eight months for all of the surgical side effects to fully go away. Have patience and get lots of rest!:slight_smile:

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