7 weeks post MVD - definitely not plain sailing with bad head pressure pain!

As promised in my previous discussions, here’s the latest installment:-

Have spent the last 3 weeks, in terrible pain worse than the MVD op itself, which is down to possible non contagious meningitis, too much fluid, possible CF leak. I have been on steroids for the last two weeks which certainly have helped although I still have terrible head pressure rushes prticularly in the morning and evening, which gives pain and affects my hearing.

I was told by my NS that I should never have flown 4 weeks post MVD, despite being told that it was ok to do so when my MVD was scheduled, feel very upset with this because if my head swelling/pressure issues are because I did, I would never have travelled.

Can’t wait to feel normal again, at this moment in time, whilst I have no TN pain, I actually do regret having the surgery as I feel that I have had really poor post operative care in the UK with a lack of advice in dealing with the swelling and head pressure issues, which has left me constantly wondering what’s next…

Would love to hear from anyone who had suffered with severe head swelling, head pressure and pain post MVD and how long it took to clear and treatment undertaken.

I will see my NS for an update later this week.
Thanks

Oh my, I’m so sorry to read of your pain and negative experience…(( hugs))
I have a pressure like thing going on as well, but only when I do too much. The definition of over doing it varies from day to day. So it’s a guessing game. Which is very frustrating.
My NS’s office explained this is because everything’s still healing, there is still fluid which is normal settling and takes time to heal. I don’t have swelling mind you.
I flew 5 days after my surgery home and had no issues, I also just flew last week to visit my best friend, I only had issues with turbulence which affected that pressure like feeling. It’s more an uncomfortable thing, not a type of pain.
I’m in my 10th week post op.
I hope your NS will take this seriously and offer you some suggestions/treatments to help you.
Again, we’re all different but I highly doubt my NS would approve flying if there were risks for any of us after mvd.
Sending positive thoughts my friend, thinking of you, Mimi xx

Hi Quickie,



I’m so sorry to hear you having such a difficult recovery. I had severe head pain and pressure post MVD surgery for 3.5 weeks. I was given steroids for the swelling and tramadol for the pain. The steroids helped quite a bit with reducing the pain and pressure but when I went off of them it was a challenge. I’m now 5.5 weeks post op and while the headaches and Neuralgia pain are still there they are getting incrementally better. My nerve was so damaged it was bent and I was told it could take 6 months to 1 year to heal so I expect to have nerve pain for a while and hope the surgery was a success but I won’t know until then. I’m still taking gabepentin for the nerve pain but only xtra strength tylennol now for any additional pain. I have read about people having fluid build up post surgery that may need to be drained. Do you have fluid coming out of your ear, down your throat, or nose? When I was concerned I might have a CSF leak the on-call neurosurgeon told me the fluid would need to be coming out of one of these three places to be a CSF leak. If it was meningitis you would have difficulty touching your chin to your chest, running a fever, etc. It’s good you’re seeing your NS soon and wish you well in your recovery. All the best to you.

Hi,

I'm writing to request some information as my mom is going through a tough recovery, similar to what most of you are going through.

A little background on my mom:

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”. She is not sleeping at night or able to function really during the day.

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.

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 advice or feedback you can provide would be extremely helpful!

Thank you!!

I was taking Dilaudid, a strong narcotic for at least a month after surgery and also took steroids for a time and low dose Klonopin for spasms around my eye and cheek... My head felt like it was going to blow up at times, other times I feel not too bad.My drs. weren't impressed with my pain, it was as if the surgery was over and goodbye. Had ear related issues for months as most of us do...fluid related usually, but it eventually cleared up and now I am just a lot more sensitive in that ear. I'm sorry it's taking so long for you. I didn't fly and still had pain issues, but eventually it went away and the electriacl shocks were gone, unfortunatedly for me the non-shock pain is still there 5 yrs later. Now I have ice pick stabs to the ear, but again my neurologist seems unimpressed and didn't even prescribe pain medicing.

I hope for you things eventually level off. Everyone heals differently. While I was up and about within days, I definately took it easy for about 3 months. Glad you are seeing your NS again, hope you get some answers. Fell better.

Hi concerned daughter,

I completely sympathise with what your mother is going through, particularly when your surgeon says this is not the norm. Whilst it may not be the case when I suffered severe pain, swelling and sickness 6-8 weeks after my MVD I felt that this was much worse than having the MVD itself, which with hindsight I think has a lot to do with anxiety because you don’t expect to feel worse or have more symptoms and just want answers and some reassurance.

I can only tell you what happened to me, which you have obviously read in my blog updates posted on this site, since then I went back to my surgeon who advised that I had a CSF leak which because it was a small leak the body should absorb it naturally although it will take min of 3 months. Whilst the steroids (I had two courses) made me feel initially better my surgeon said they were not the answer and was dissapointed that I had been prescribed them. Yes I did get pain after stopping and the swelling is still there but it definitely is reducing and so is the pain. I am no longer on any TN or pain meds and still feel that with each week I am still seeing improvement. In my opinion it is definately a slow recovery process (expect 6 months) and your mum definately needs to rest up. If you feel that your mum is not seeing any improvement at all demand to see the surgeon as it needs to be investigated further.

With regards to the spinal fluid tap, this was offered to me as the next step if I didn’t start seeing an improvement with the pain and from what I have read this has helped people with similar symptoms to mine whereby the excess fluid is drained away, fortunately I didn’t need this as very slowly over the course of the last month (3months post MVD) I did gradually start to see an improvement.

Really hope your mum feels better soon, it is awful going through such a huge procedure to find that more problems persist afterwards, really hope they are short term like they were for me.

If you have any further questions, please don’t hesitate to get in touch again.

I am about 10 weeks post mvd and am struggling, again, with head swelling. The right ear is swollen inside and out and my head definitely gets swollen as well. Only the mvd side. I had gone a solid six weeks with no swelling and now it is back but different. I am seeing my neuro again in December. I spoke with my neurosurgeon’s p.a last week amd she seemed sorry but unconcerned about the changes in pain, swelling and hearing. Has your swelling and pain resolved itself? I have another MRI scheduled for late March 2014 to check on the eighth nerve which was manipulated while trying to get at the fifth nerve. I would appreciate any glimmer of hope with my situation. Speak to me friends.

If I was an uninformed, unbiased observer who had read many of these post- MVD surgical reports from various neurosurgeons I would notice that many of them seem to not give a rip about heir patients once they are wheeled out of the operating room. It seems that whenever there are any complications they are inconsequential or very minor or rare or must be because of something that the patient has done to cause it. It’s NOT your fault that you have swelling or a CSF leak or staples coming out or hearing issues or horrible pain and yet these dudes blame YOU and are disappointed and disapproving of you for these issues! Sorry, I will be quiet now, my problem is that I have come to care about you guys and on the days you are having surgery to cheer you on and remember to pray for you-- and I don’t like it when someone disrespects ANYONE, even if the one doing it has a MD behind his or her name. Shutting up now. Take care.

Hi Patty,

I am eight months post my MVD now and am pleased to say that all swelling (which was the same side as my MVD) has completely gone - so has all the pain! I don't think I will ever forget the pain and anxiety suffered when I started to get the swelling, pain and sickness I really felt that it was so much worse than the MVD surgery and was completely unexpected. Although I did have two courses of steroids my actual surgeon was nonplussed with the swelling and said that in time it would go and be absorbed into the body, which has happened, but it is easy for him to say that when he didn't have the pain and the dizziness etc, therefore I personally felt the steroids did help alleviate enough of the pressure and swelling to make it bearable. without the need of having a spine fluid tap.

I know everyone says it and it may be difficult but try and rest as much as possible as I found the swelling and head pressure seemed to get worse when I overdid things and I think its your bodies way of saying "rest up"!

Wish you all the best and a speedy recovery.

I am about 10 weeks post mvd and am struggling, again, with head swelling. The right ear is swollen inside and out and my head definitely gets swollen as well. Only the mvd side. I had gone a solid six weeks with no swelling and now it is back but different. I am seeing my neuro again in December. I spoke with my neurosurgeon's p.a last week amd she seemed sorry but unconcerned about the changes in pain, swelling and hearing. Has your swelling and pain resolved itself? I have another MRI scheduled for late March 2014 to check on the eighth nerve which was manipulated while trying to get at the fifth nerve. I would appreciate any glimmer of hope with my situation. Speak to me friends.