I’ve decided to document my journey and progress in hopes it can help others searching for the source of their pain. My history could probably be a case study, so it will be interesting to see how things progress in my situation. I will continue to post my progress each week.
My Medical History
*1-2 migraine headaches a month; over time progressed to constant severe headaches, severe right jaw pain, stabbing pain in the right cheek/throat/tonsil/ear areas.
*sleep apnea (wear cpap)
*Mild IBS for decades, GERD for 2 years, gastroparesis for 7 months (required J tube placement)
*Anxiety for 2 years
*Difficulty with low blood pressure and high/low heart rate
*Interestingly, the GI symptoms and headaches/head pain symptoms were slowly progressive over a long period of time.
My Diagnosis:
*I had 2 years of test after test and the only thing found was “mild gastroparesis” and GERD.
*A recent neck CT found “hyoid bone elongation” but , per Dr. Chhetri, that did not explain my current symptoms. Eagle’s Syndrome was ruled out.
*So the mysterious symptoms with no answers continued, until I saw a neurosurgeon (NS). The NS did a FIESTA sequence brain MRI. From that I was diagnosed as having vascular loop compression compression of 4 cranial nerves. The SCA was compressing the trigeminal nerve and the PICA was compressing the glossopharyngeal, vagus, and accessory nerves. After the MRI the surgeon stated “the MRI only gives us an idea; we don’t really know what we’re dealing with until we get in there and see”.
*I received Microvascular Decompression surgery June 14th, 2022.
Surgery:
*Per the surgeon, they found the expected trigeminal nerve compression and fixed it.
*Also per the surgeon, things were more complicated than they thought with cranial nerves 9, 10 and 11. All 4 rootlets of the vagus nerve were compressed. However, they were able to fix all compressions with no evidence of long-term nerve damage.
*The surgeon said, “after doing surgery we now know why you’ve been having all these symptoms”.
*He feels the headache/head pain symptoms are from cranial nerve 5, stomach issues are from vagus nerve compression, and throat symptoms from cranial nerve 9.
*Based on the success of the surgery, he expects a “full recovery” with possibly even some significant improvement with the GI symptoms. This improvement will take up to 18 months to occur due to the 3-step nerve healing process.
Post-MVD progress:
*Week 1: it was a blur of nausea, vomiting, and surgical pain.
*Week 2: a bit improved but still significant symptoms same as week 1.
*Week 3: Odd week. Nausea improved. Lots of neck and incision pain. Starting to get ear pressure with some dizziness. Walking some short distances but it’s exhausting. Some mild headaches starting. Starting to have intermittent mild burning in tongue/throat, hands and feet. GI system is starting to “turn over” more frequently.
I love your documentation, @1speechpick Your current symptoms indicate to me that your compressed nerves are “waking up”. The increased digestive turn over rate, tingling/burning in tongue/throat, arms & hands are all nerve symptoms. As uncomfy as they are, those symptoms are great signs that your nerves are recovering. I hope the symptoms, headaches in particular, stay mild & go away quickly. Nerve recovery can be painful & that’s where nerve pain meds can come in handy.
I had a section of skin along my jawline that was numb after my section surgery. As the nerves healed I would have the sensation that area was cold (but it wasn’t cold to the touch) or extra warm (but wasn’t significantly warm when I touched it). It was very bizarre. These two sensations alternated for weeks to months (didn’t document & can’t remember now). It was an interesting process to feel my nerves recovering.
@Isaiah_40_31, thank you for your kind words. It’s greatly appreciated. I agree. I think the symptoms are the slow start to nerve regeneration. I’m most excited for the digestive regeneration but that’s the one that will probably take the longest, as all 4 rootlets of the vagus nerve were compressed. I noticed today I’m having mild tingling/burning in my hands and feet unlike anything I’ve had before. Do you think this is vagus nerve regeneration? It’s interesting you had some of the same experiences.
Your hand tingling could be coming from your accessory nerve (cranial nerve XI). It’s possible the tingling in your feet is coming from the vagus though it would be indirectly. The vagus nerve extends from brain into pelvis, & the nerves that affect the feet come from the sacral plexus in the very lowest part of the spine. It’s possible that there is some sort of “electrical connection” between that & the vagus, especially if the vagus is currently “super charging” as it’s starting to re-awaken. This isn’t a scientific statement, but I believe our bodies are way more interconnected than many medical professionals will admit or even know.
There are definitely changes happening, and some of them are not pleasant in the process. The key for me will be to try to focus on other things while all this is happening.
Unfortunately nerves do strange things when they start to wake up, like itching & burning…I get a strange whoosh up the outside of my ear when something makes me jump, never had it before surgery! It’s less intense than it was in the early days though.
It does sound as if you made the right surgery choice given how many compressions you had! I hope that the nerves start to heal a bit more quietly for you!
I can’t figure out how to edit my original post, so I’ll continue the news on my journey in this post. I’m not 11 weeks post MVD surgery. My recovery was “textbook” for the first 5 weeks. By week 5 I was feeling pretty good with minimal pain. But at the beginning of week 6 I had sudden onset of severe headaches. After 3 trips to the hospital, they finally figured out I had Cerebral Venous Sinus Thrombosis (a blood clot in a vein in the brain). The blood clot has caused terrible symptoms like severe headaches and other neurological symptoms. The treatment is blood thinners and medication to manage the symptoms until the clot hopefully dissolves in a few weeks or months. CVST is a known but rare complication of MVD surgery. The long-term prognosis is good but rough symptomatically until the clot dissolves. Hope everyone is doing well.
@1speechpick - I am SO SORRY you’ve had this rare complication. How unfortunate especially when you were finally feeling better! I hope the blood thinner & & other meds do their job ASAP & your recovery is quick i.e. days not weeks or months but then I am a wishful (not always realistic) thinker.
Thank you for the update & please keep us in the loop about your recovery from this. I will be praying for forward progress & rapid pain/headache reduction. It’s time for you to be able to move on w/ your recovery & the next stage of treatment if you do need your hyoid bone worked on. God knows the perfect timing for these things.
I’d like to get some opinions from those who are used to reading scans. I was diagnosed with a CVST on 8/20/22, 6 weeks after my MVD surgery. These snapshots are from 2 different MRV scans: the first one from Feb, 2022 BEFORE the CVST and the second photo is from August, 2022 AFTER my CVST.
In comparing the two photos, is obvious to see that my right side is my dominant draining side (pretty common for that to happen). Now it looks like my right side isn’t draining ANYTHING. The left side looks weak on the drainage. I feel like I might see some possible venous stenosis in the left transverse sinus (on right in photo due to mirror image). If that’s the case, no wonder my head feels a mess!!!
Any thoughts? @KoolDude or anyone else who looks at scans a lot want to weigh in an opinion?
@1speechpick I can see the clot (Cyan Arrow) but I think the new narrowing/stenosis is due to the clot. You are right the right transverse/sigmoid/Jugular vein is the dominant. I think it is the clot that is causing for no or tiny signal to appear in the right transverse/Jugular Vein (Red circle). Once the clot dissolves, I assume the dominant drainage will still be the right but I see that the nondominant left side is draining more now and also appears to have some tiny clots itself (could be artifacts but you can see light dark areas ). Are they going to do another MRV after the anti-clotting medication
@kooldude, as always, thank you for this helpful information!! It’s greatly appreciated! Unfortunately the anticoagulation isn’t enough to help with any of the symptoms.
I feel like I also see areas of stenosis. Do you see that as well? Thanks again for your reply!
Yes, I do see it but I think it is due to the clot that is blocking the blood to go through the right transverse sinus this is what I assume but I do not know if the surgery or new extrinsic compression is to blame. I think this will definitely cause IIH symptoms such as headache. How is your headache now?
Oh @1speechpick! That’s certainly a change in the wrong direction! I am so sorry for this current situation you’re experiencing! I can’t imagine how frustrating this is for you! Has your surgeon offered any alternative therapy if the anticoagulant meds don’t help? Is another surgery a possibility or is that too risky (I’m very ignorant in the blood clot removal arena)? I will keep praying that the clot(s) will dissolve & your healing will progress once again.
My headache is horrendously painful. It stinks because I was doing pretty well. I’m seeking second, third medical opinions. Something needs to be done other than blood thinners. They’re considering this a “provoked clot” from the surgery. The secondary IIh symptoms are what need managed.
