Surgery (MVD) Done....now what?

1

Hello,

Finally checking in...I had surgery on 8/28 (Tuesday) and afterwards the surgeon informed me that what he had seen on the MRI/MRA was actually a vein that was compressing the TN! He said he had read about it but never actually SEEN one that big and engouraged (leave it to me to be the oddball case). Anyway, he proceeded to continue with the decompression portion...then he found something (forgive me I keep forgetting) from the dorsal root that was at the end of the TN that he had to cut because it had formed an stricture there...and finally he went in and "combed" his words a bundle of nerves.

I woke up in the ICU with oxygen, a catheter, IV, and arterial line to monitor pressure. I am fogging until the evening. I was asking for pain meds every hour which was Fentanyl I found out later which has no staying power and I was not ordered anything orally for pain. The next day I had a visit from my neurosurgeon who repeated what he had done and realized I was not getting adequate pain control and changed my IV medication. I remained in the ICU another day d/t pain, and difficulty seeing without everything moving at an exaggerated rate for which he ordered valium.

The third day I was well enough to have the catheter, art line, and oxygen removed and was moved to a neurology floor. I was able to get up, eat, etc....I started to get a rash on my legs and thighs and informed 2 nurses and a tech for which I was ordered benadryl by mouth. I thought maybe the IV pain medication or valium were the culprits. On the fourth day (Friday) I was discharged home.

Once home my mom and husband took care of me and I was miserable. I didn't eat, barely drank, and found it difficult to even get out of bed. I didn't shower (not like me) and just felt bad. My rash continued to worsen. By labor day it had almost turned purple, the itching was unbelievable, and it was on my back, legs, thighs, neck, basically head to toe. My mother paged the neurosurgeon for advice and upon hearing I was running a 101 degree temp advised us to go to the ER even though he didn't think the surgery was related to my symptoms. I arrived at the ER and luckily I knew the triage nurse who took me right back, I also knew the nurse caring for me and the ER doctor. An upside to working at the same hospital for 18 yeas (14 of them in the ER). The doctor listened to the story, evaluated the rash, and said "your going back in" he called the neurosurgeon and it was done. Back into the hospital I went. Steriods, pain meds, benadryl for itching you name it I got it...I just wanted relief. By the next day my primary care was at the bedside and decided to consult dermatology vs infectious disease d/t the severity of the rash.

A day later it was concluded that the rash was from the antibiotics that I had received during surgery! Continued on the steriods and Weds I was set free for a second time on Prdnisone, and vistiril for itching. Now I am home and it is Sunday. My rash is virtually gone but what isn't is my PAIN. It is a different pain. Instead of in the corner of my eye with icepicks and boring/burning pain it is the top of my head (still rt sided) and feels as if someone is hitting me with a hammer vs icepicks. I haven't regained all of my hearing in the rt ear and it clicks when I talk which is annoying..and of course the incisional pain is constant and I cannot seem to get comfortable no matter what i try. Sore on that side from surgery, sore on the otherside from the vice they used to keep my head straight while I was under.

On my last day in the hospital the NS came by and I told him of 2 incidents during the night where I was awakened by what felt as if a HAMMER had slammed the top (rt side) of my head the first time I vomited, the second time I was very nauseated. He asked me to show hime where which I did and he mentioned that I was pointing to the exact area of the occipital nerve. He said that if it didn't stop we could consider a nerve block to that area and if it was successful consider an OCCIPITAL NERVE SIMULATOR! I was shocked and surprised to say the least! I thought that the MVD was the answer at the very least he would say give it a chance your still healing! Well that is my VERY long story but I thought I would try and get all of the details out in case anyone had any ideas, thoughts, or similar experiences. I am so depressed. I cried all day yesterday. Oh, one last thing the NS wants me to start tapering off ALL MEDICATION to see how well the surgery has really worked! I take Tegretol, Neurontin, Nortriptyline, Lamictal, Cymbalta, and Verapamil...all specifically perscribed to help with nerve pain! I am TERRIFIED! Need advice as to what to do next. Thanks for the ear

Judi

2

I have sent Red a message and asked him to take a look at this. Be assured he will when he is in attendance and has time. I am so, so sorry to read of the difficult time you have had, I hope for better for you soon.

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Thank you so much Jackie :slight_smile:

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Judi, before your surgery did you ever ask the attending neurosurgeon how many of these procedures he had done? Several aspects of your narrative suggest to me that he wasn't terribly experienced with MVD and its after effects.

One aspect of common experience may help you settle down a bit: it is common for the nerves to take a few days to weeks to "settle down" after an MVD and it isn't UNcommon during that period for pain to come and go or shift around. Incision pain might last two to three weeks, during which it will be wise for you and others in your family to remain alert for CNS fluid leaks, which happen in perhaps 5% of all MVD procedures (they are correctible but obviously an infection hazard and scary for some folks)

In my opinion as an informed layman who reads a lot of medical literature, it's most likely WAY too early to get serious about an occipital nerve stimulator or any other kind of deep brain stimulation. I know that practice varies between physicians, but if you're having sharp occipital pain right now, then I'd also say that immediately tapering you off meds might not be a terribly good idea until you get some settling and better control of pain that you already have.

Obviously, these are issues to discuss FIRST with the attending physician. I am taking the liberty of blind-copying your posting to a prominent neurosurgeon who has sometimes helped me sort out case advice in the past, and I will get back to you with comments or suggestions for exploration with your medical team, if I receive any.

Regards and best,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

5

Here's a follow-up from the neurosurgeon I mentioned above:

"As to the rash, not that common, but not unheard of following routine prophylaxis. Sounds like it is settling down. As to the pain story, it would be useful to know where, what and how long the pain had been present, as well as what propelled her to surgery. Depending on the symptoms, residual pain or new pain(s) can arise from the manipulation of the nerve or the felt placement. (If either deformed the nerve tract then it will produce residual new pain.) In any case, remaining on the preoperative TN meds (or adding one if none in use) would be a good idea for the next few weeks."

Feel free to amplify on the questions raised by the professional, Hon. I'll look in by tomorrow if I haven't already heard from you...

Regards, Red

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Thank you Red for your feedback. Yes, I did ask the NS how many procedures he had performed. He has done hundreds and also keep meticulous records of each patient. I asked if I would be able to speak to any and he produced several that I could phone as he had just relocated to my hospital. I too thought the ON stimulator was a rushed thought and that getting my meds titrated when I was still so uncomfortable wasn’t wise. I didn’t feel as if I needed to " settle down" as much as find out if what I was experiencing was the norm. I read that the nerves in our brains were never supposed to be exposed to air it can make them a bit “angry”. I will await further evaluation and as always thank you for your input and concern.
Judi

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The angry nerve analogy isn't precise, but it's not incorrect either, Judi. When the nerve is manipulated during surgery, or stretched in a whiplash injury, a brief period of anesthesia can be created, followed by recurrence or increases in pain. Feel free to come back with other questions or concerns.

Red

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Funny you mention whiplash. Two days prior to surgery I was involved in hit nd run accident. I was driving and hit from behind at approx 30-35 mph. The physician said I did indeed have whiplash. I did report this ti all involved with case including the NS and anesthesiologist.

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Hi Judi, I have nothing to add just wanted to wish you continued healing and hope for you that everything settles down and you will be pain free for the long term. Rest, rest and positive thoughts, (( hugs ))

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Trust me, Mimi -- you added something... As Stephen Koonz writes in his novels, "A shared joy is magnified, and a shared sorrow lessened." Your caring input is welcomed here and encouraged.

Regards, Red

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Dear judi,

thank you so much for sharing. i read everything.. and felt like it was me on that operation. gives me the chills.

glad for you you are after it - but it seem you have to be stronger than ever.

it's so hard this thing.

i don't know if i understood right - but - did you pain in the jaw area replaced by some kind of headaches ?

maybe it's a good sign ? maybe the operation took care of the TN .. and the headaches are side effects of the surery...i read so many times it taked for people weeks to monthes to get over this surgery... so maybe it still doesn't mean anything what you are feeling now in terms of success or failure.

anyone it sounds very very hard... those days after the surgery... really hard to read. holding fingers for you.

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The pain rt sided started in Dec 2012. I had the constant boring burning pain to my rt eye, top of my head. Ice picks to my ear and inner eye. I had been to numerous physicians, been on multiple medications and still lived in my room, dark, alone. Once I met the neurosurgeon and offered what seemed like a solution to the misery I was in. I’m not sure if I made the rt choice as I am drooling out of he rt side to my mouth due to numbness from the nose down. I can’t her from my rt ear, but the pain in the ear and eye are improved but I do have a “different” type of pain to the top rt side of my head that seems like a constant hammer like pain. Today is not a good day. I come here for support because it’s hard to communicate all that I feel to people who haven’t had to deal with it. Tomorrow is 2 weeks out… Have a good day

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Not being able to hear or hear well

within a week or two with MVD is pretty common.

My surgeon whispered in my left ear a few times after MVD- because something was keeping track of my auditory system during surgery - and he was concerned -- it went away within 10 days - muffled in left ear.

Keep Posting!!

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Hi Judi

I hope you are doing better.

I remember back to my MVD.

I had similar pain
but not to the same level. I was in hospital for 10 days and on the heavy pain meds for those ten days, I had a CSF leak and this earnt me an extra 2 weeks in hospital but thats off topic.

My Nuro also reduced or Titrited my meds down to see how well the op worked

I was put back on the meds straight away.

But he waited 4 months before doing this, not weeks.

Red may have much better expalnation than I but the MVD may have reduced an issue for Type 1 TN and you may have some underlying type 2.

Again Red has some better information.

If you keep a pain diary and then try (I know at the moment this will be hard) But try and speak to your nurologist about the pain you have now he might be able to give you targeted medication for that.

Thoughts are with you

Simon

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Simon's instincts on the nature of your pain following MVD seem pretty much on the mark for me. Lingering pain after MVD is fairly common, with a gradual settling down and reduction. And the interplay between Type 1 and Type 2 TN pain can be subtle. Type 1 tends more of the time to be associated with discrete vascular compressions. Type 2 seems to have more of a "systemic" or "distributed" character that is less likely to respond to decompression of the nerve.

Regards, Red

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Judi,

I am so happy for you, what an accomplishment to get to where you are.

For what it’s worth I have many TN1 and TN2 symptoms on my left side and TN1 on my right; both sides involve all 3 branches. One of the more complicated is this occipital pain that feels like being hit with a hammer or how it feels when you hit your head hard like standing up under something. Mine moves around, high on the back of head on one side or the other (sometimes both), typically around 3" diameter spots. Sometimes it is a band like section 1" x 3" across the back top of head, or smaller circles the size of dimes or quarters. Sometimes it will transfer to my temple area above ear. I can have it like a band around my head to where it makes temple, both eyes, eyebrow and socket area hurt( I wear glasses, so its a real bugger). The top of my scalp is like bubbling patches of prickling pain drifting across the top of the head. My tongue will tingle a lot before a bad scalp and head episode. My eye lids swell up every night. Left eye twitches and quivers when irritated. Eyes tear up also. I also get those migraine/cluster headaches when things get bad. Lately it hurts and aggravates something when I lay down on the back of my head, it hurts the top back of head and causes that band of pain to creep around to my eyes. The opthamologist confirmed TN occipital problem.

The only thing that helps me is Baclofen. I find that it helps the top of the scalp the most, and has made my eye twitch much less. I am not able to tolerate most other meds, so I am thankful for something I can take. That helps some of the pains. Does not do anything for the cheek,teeth or ear, etc..Maybe and Idea!

I think that the advice here about waiting a little longer for things to settle down is sound. It sounds like your surgeon really made things “angry” in there. I am planning on doing the MVD myself soon and your detailed experience helps me a lot thanks for posting. I hope your nerve settles down soon you must be anxious to find out if it has worked at all.

Waiting for relief,

Tree69

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I just wanted to stop in and thank everyone for their comments, suggestions, support etc… I love hearing that I’m not alone in this… I feel like I’m far from done with this journey and it is here to teach me something. Maybe not to take my health for granted, enjoy the painfree times when and if they come …again thank you all