7 weeks post MVD / issues questions

General General TN & GPN (Old Site)
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Hi Friends,

In addition to TN, I had GPN and GN.

The pre op report showed "dolichoectatic"vertebral arteries on the right and left. It also states that I've got greater risk of side effects due to the large vertebral artery and the need for manipulation.

Key notes from the operation report: "Sectioned the nervus intermedius.A vein running between the 9th and 10th was divided an cauterized at the level of the brainstem. A small artery that was compressing te 9th nerve and the upper fascicle of the 10th was decompressed with teflon pledglets. The vertebral artery was seen compressing the entire 9th and 10th nerve complex at the brainstemj entry and exit zone. This was decompressed with numerous teflon pledglets due to its size." A small arteriole was running along the 5th nerve .was decompressed with teflon pledglets. ...in their closing process.- the dura was closed with running and interrupted 4-0 sutures....a muscle patch was also necessary."

My current condition is somewhat better than prior to surgery - I was in extremely bad shape before surgery - but I'm not doing very well overall.

I have some issues I’d like some opinions / guidance on. I'll be speaking to the surgeon for the first time since 7 days post op next Tuesday.

Here are the main problems:

  • I still have swelling and a knot behind the ear and around the incision point / headaches, etc.

  • Inner ear / jaw / temple / cheek pain and pressure. Jaw is constantly being pulled to left side. Jaw pain and pressure. Muscles are very tight. Spasms more severe in morning or when lying down - I hear/ feel the ear fire then the quick shooting spasms in jaw or throat - or when talking a lot. Spasms are somewhat less severe as prior to surgery but not much.

  • Ear feels full , painful, pops.

  • Temple area is a hot spot of pain, pressure and periodic popping.

  • When I relax the jaw and move it to the right (to try to stretch) I feel the pain run through the left temple , cheek, and ear.

  • Sever tinnitus – high pitched ringing and hissing 24/7.

  • Some shooting pain in neck , tingling, pins and needles in left side of face, stabs in left of eye around eye, etc.

  • Tongue is somewhat better but hurts to talk a lot . Seems like jaw/ear may play a role in tongue issues? When I'm able to relax the jaw - which is hard to do - the tongue seems to relax.

Could some of the issues be the trigeminal nerve ganglia…or a Eustachian tube problem? Could it be the mandibular branch ? Or glosso nerve / stylopharyngeal muscle ?

Thank you !

Eddie

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..a muscle patch graph...

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Eddie, I think you meant muscle patch graft. I posted a long reply on Living With TN, duplicated here:

You asked me to read this post and offer an opinion. From what I read here, I'd have to say that you and your surgical team are dealing with an unusually complex and wide spread pattern of multiple vascular compressions on multiple nerves. Even after the surgery, and seven weeks later, you still have trigger zones. From what I've heard from hundreds of patients whose presentation had elements in common with yours, I'd say that you'll be healing from the multiple MVD's for at least several weeks more -- possibly a year or longer.

To find a surgeon who will even attempt procedures on the nervus intermedius is rare. It's an exceedingly small place to work and deeper into the brain stem area than the site where most decompressions are attempted for TN or GN. Few surgeons are willing to take the risks of further damaging relatively small nerves that are hard to get to.

The tinnitus is likely to originate in a ganglion along the Vestibulocochlear (8th cranial) nerve, which I believe is somewhat remote from the areas where your MVD procedure left teflon pads. If I had to speculate, I'd say it's likely you will have some level of tinnitus for the rest of your life, regardless of any other improvements in pain levels. Many people do, and MVD for the auditory ganglion does not appear to have a high success rate, from what I read. Understand, however, that I'm not a medical doctor, and we're dealing with issues here that are both complex and subtle. I can't say I have a great deal of confidence in my reading of medical literature concerning these issues.

As for the Stylopharyngeus muscle, it is served by the same nerve which is involved in glossopharyngeal neuralgia, but the literature I've read doesn't offer much insight into whether compressions of this muscle can be responsible for the pain of glossopharyngeal neuralgia. For a brief review with good graphics, you might try http://en.wikipedia.org/wiki/Stylopharyngeus_muscle.

The muscle patch(s) mentioned in the surgical report seem fairly typical of more complex procedures that disturb areas deeper in the brain stem. The knot behind your ear is likely unrelated to any of that, but should be evaluated for secondary infection.

I'm sorry that I can't provide something more definite, Eddy. But your particular case is one that pushes the limits of my reading knowledge and previous discussions with patients.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

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Than k you Red !

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Hi Eddie

Nice to hear from you! Just wanted to reply to some of the issues you're saying you've had;

  • I still have swelling and a knot behind the ear and around the incision point / headaches, etc.

I STILL have a bit of swelling and a knot behind the top of my ear - saw my specialist a couple of weeks ago who said the knot is where the piece of skull was removed, and is likely to be there forever. The swelling can take up to 6 months to go he said, and on top of that I am only beginning to have feeling again in the top of my ear and right behind my ear. I am 15 weeks post-surgery now.

  • Inner ear / jaw / temple / cheek pain and pressure. Jaw is constantly being pulled to left side. Jaw pain and pressure. Muscles are very tight. Spasms more severe in morning or when lying down - I hear/ feel the ear fire then the quick shooting spasms in jaw or throat - or when talking a lot. Spasms are somewhat less severe as prior to surgery but not much.

Can't say I've had these so check with your specialist.

  • Ear feels full , painful, pops.

Yes, I felt like I had a blocked ear or an ear infection all the time but it went probably around 10 week mark.

  • Temple area is a hot spot of pain, pressure and periodic popping.

YES, including numbness behind my ear - apparently it's the nerves in your skin "re-awakening" after surgery??

  • When I relax the jaw and move it to the right (to try to stretch) I feel the pain run through the left temple , cheek, and ear.

Nope can't say I've had this.

  • Sever tinnitus – high pitched ringing and hissing 24/7.

Yes, in the early weeks but I haven't had it now for about a month so that means it must have gone about 11 weeks?

  • Some shooting pain in neck , tingling, pins and needles in left side of face, stabs in left of eye around eye, etc.

Yes yes yes, and the specialist said it's to do with the incision - there are tiny nerves in your skin and when a deep incision is made it can cause numbness firstly and then tingling/pins and needles. I haven't had it in my eye, but definitely in the area close to my ear. But this could be the TN in your case, I haven't had this.

  • Tongue is somewhat better but hurts to talk a lot . Seems like jaw/ear may play a role in tongue issues? When I'm able to relax the jaw - which is hard to do - the tongue seems to relax.

I'm ALWAYS having tongue/jaw issues, and the surgery hasn't helped/made them worse. So I would guess at these issues not being surgery-related?

Does this all help? Bear in mind I only have GPN and not TN. I'm currently reducing my medication, but I have GPN still post-surgery albeit less than before. Specialist said not to stress for the first 6 months as that's how long it "officially" takes to recover. You're still only 7 weeks remember, there's still a long way to go to get rid of these issues for you. Swelling etc. will all settle down, so don't panic.

Speak to your neuro/doctor if you're worried about anything, it will help to put your mind at rest.

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Hi Eddie,

Sorry to hear about your challenges, have things improved at all for you?

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Smiley,

I am generally better than I was before the surgery but have issues that are debilitating as described above. I was on an uptick about a week ago before a trip to Fla with family. The activity level likely caused me to get worse - I've been feeling bad over the last few days. I got a bite guard which may be helping my jaw issues - not quite sure yet. ENT wants to wait another couple of months to start treating the tinnitus. I'm seeing my neuro next week and hope to get some advice on other issues.

Thanks so much for checking with me Smiley!

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Hi Eddie, how are you doing? What did your neuro say? x

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Saw the neuro today. I'm 10 weeks post op - and have the TMJD stuff and all my neck problems to deal with Also tapering off Lexapro which may be part of my problem now. Gettiing an MRI on my TMJ tomorrow. Thanks for checking in -- how are you doing Amanda?

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Not too bad Eddie, pain about a 1/10 most days - tapering down Tegretol right now to see how much the surgery worked.