Keep strong, it’s early days still. Will keep praying for you, sending you a very gentle hug
Well, I’m at exactly the 2 week post-op point. Things are generally slowly progressing. However, there is one post-op complication I’m having that really concerns me. My soft palate has decreased mobility on the right side. Right after surgery I was having nasal regurgitation of liquids due to this problem (during swallowing the soft palate seals the nasopharynx so food and liquid don’t escape through the nose). Things are some better but not at all close to baseline. My speech sounds nasal.
This is all likely due to manipulation of the vagus nerve on the right side. The vagus nerve is responsible for motor innervation of the soft palate. I just hope this regenerates, even if it takes a long time.
Mine mostly (80-90%) resolved within 16 months so far. Initially my uvula on the operated side was visibly weaker and wasn’t moving properly “up” on that side. Gag reflex on the op side was reduced too.
Started improving about 4-6 months post-op. Mostly resolved now, 16 months after the surgery (the surgery was just a partial success, as the remaining stub of the styloid is still longer than a normal styloid should be ).
Thank you so incredibly much for your input!! I actually had a Microvascular Decompression surgery but had manipulation of similar anatomy. I’ve never met anyone else who had reduced palatal life as a side effect from surgery. I’m so glad to hear that your has mostly regenerated. I’m hoping mine will too. You’ve given me hope! Thanks!
Did you go through any type of speech therapy or just give it time?
I guess as long as you have any even the slightest sensitivity in that area on that side, it eventually will regenerate as the nerve pathway and nerve blood supply is still there.
As for the speech therapy…
I tried various exercises based on how it “felt” “there”, mostly activating digastric and other muscles on that side.
Did it temporarily affect your speech as well?
Voice was really hoarse. Still is occasionally.
When I had my swallowing & tongue issues post op, I looked into getting swallow therapy i.e.offered for stroke victims. I was approved by the therapy clinic for it but had to have a referral from my PCP which he refused to give. Told me I didn’t need it. I was mad because he wasn’t living in my home listening to me choke every time I took a drink of water & didn’t see me struggling to eat my meals, BUT I was no self-advocate back then, so I let it go. I am sorry I didn’t pursue it as I think it could have really helped me. It might be something for you to look into @1speechpick.
@1speechpick First, I wish you rapid recovery but I am wondering if other symptoms you had prior to the surgery are improving. if they are, at least you have something to be hopeful about with even remaining nerve issues.
Hope that this does improve, good that you say you’re slowly progressing otherwise…Will keep praying for your healing, & sending you a gentle hug
Thank you all for your kind words!! It’s so greatly appreciated!!! It’s so interesting to see the parallels of MVD surgery along with Eagle’s surgery, especially in terms of cranial nerve manipulation during surgery. I had my 2 week post-op appointment today (virtual). I got to ask a lot of questions!
My doc said he thinks I was born with the nerve compressions, which was interesting to me. His stance is that “the body can tolerate nerve compressions until it doesn’t”. As compared to the MRI, he said once they got inside “there was much more work to be done” especially on cranial nerves 9, 10, and 11. He said when there’s a lot of nerve manipulation, it’s all but expected to have post-op nerve irritation symptoms for up to 18 months. He also said…because I had no long-term nerve damage…he expects a full recovery of nerve function within 18 months. Or at least there’s a better than 90% chance of things returning to fully functional. So this was great news. My doc explained the 18 month healing process of nerves post-surgery. It was quite interesting.
There’s a lot of controversy when it comes to doing MVD surgery. I had a consult with a prominent physician in the USA. This doc was only going to fix the glossopharyngeal nerve bundle and not address the trigeminal nerve during surgery. My doctor said his team surveyed cranial nerves 5-12 during surgery in order to fix all identified compressions. He also said what is seen on an MRI isn’t always predictive of what is seen during surgery. I learned a lot today.
So far my glossopharyngeal throat pain is gone. I’m still having twinges of trigeminal pain but honestly it’s hard to tell if it’s that or incisional/neck pain (which can be significant with MVD).
Hope everyone is doing well. Have a great day.
Glad to hear you got useful discussion with the doc!
Re 18 months healing process, that’s quite interesting! More details please?
Nerve healing stages
Stage 1: swelling (from post-op)
The nerves become swollen from surgery. There’s too much fluid post-op and it short-circuits the nerve signals. As the swelling starts settling down, the nerves fire better. This period lasts about 2-3 weeks.
Stage 2: “Schwan cells that wrap around each of the nerves” (I have no idea of Schwan is spelled correctly!!). The Schwan cells around the nerve will die back when the nerve has been injured or manipulated, but then the Schwan cells will resprout and grow back around the nerve again. This phase takes 3-6 months. The nerves start firing more efficiently once they have efficient Schwan cells. (my doctor referenced this as being part of the myelin sheath regeneration
Stage 3: The nerve cable has to resprout all the way to the end of the axon. This is about a one year process.
This was the layman’s version my doctor explained to me. It’s pretty basic but at least it helped me to understand the healing timelines better. Basically anything that improves initially is only due to swelling. The real nerve regeneration begins to improve within 6 months of surgery but can continue for up to 18 months after surgery (and sometimes a little longer).
Amazing info @1speechpick
And I hope that your nerves will regenerate way before you even notice:)
I’m sure somewhere there is a much more technical explanation, which I would actually like to find. But this will suffice for now.
Honestly, I’m happy w/ the layman’s version! Sounds complicated & amazing the way our bodies do a thorough recovery even when it’s a complicated process. You almost got Schwann right. It just needed another n at the end.
I’m really glad to know your surgeon communicated so well & was very encouraging. That means so much when we’re struggling w/ a slow post op recovery.
I knew I had probably spelled it wrong. :). Thanks for the proper spelling. Our bodies are truly amazing. This whole process has been a learning journey for me!!! It’s incredible that 6 weeks ago I had no idea what was wrong and had surgery 2 weeks ago.
Been thinking about @boogs99 and wondering how they are feeling after surgery. Hopefully better!
@1speechpick I’m doing well thanks. I’ve been following your progress and I’m glad your surgery went well and without complications! I hope your vagus nerve will regain those schwann cells fast and you can be back to normal soon.
So glad you’re doing well!!
That’s really interesting, thanks for the info on nerve healing, it’ll be really useful to share with those who are feeling down after not getting good results from surgery. We’ve certainly noticed on here that healing can continue for up to a year, good to know it’ll still carry on for longer than that!
I hope that you notice more improvements soon- it sounds like you made the right decision with your surgeon & the surgery