Looking at your styloids, I feel certain that having them resected will relieve you at least some symptoms. They’re plenty long enough to be wreaking havoc w/ your nerves. Once they’re gone, reassessing for nTOS would be a good plan, but you should wait at least 3-4 mos post op for healing to get a strong start. Since you have significant calcification on each side, that may mean waiting 3-4 mos before having your second styloidectomy then another 3-4 months after the second one before revisiting nTOS.
I have a consult with dr liu october 27th and constantino nov 5. Im wondering if anyone has tried to get a venogram before this consult or if its handled after.
When it rains it pours of course as soon as i got this scheduled, i get a call from mayo clinic to go for a week long test/procedure for spinal csf leaks. My next question is related to that.
I had some relief of symptoms for my 24/7 headaches after a few blood patches and an embolization. They didnt last long but it was significant. Ive also heard of another eagles syndrome candidate from facebook who said she felt better after a venogram for some reason.
Im curious if anyone has heard or has experienced some relief of eagles/congestion like symptoms after a procedure like the ones described above. Im wondering if its worth going through the trouble of flying to minesota.
@Krixen - We’ve had a number of members who’ve had blood patches to stop CSF leaks before they knew they had ES & IJV compression. They, too, got temporary relief from the blood patches, but not longer term because the intracranial pressure from the IJV compression would simply blow the patches off thus allowing the leak symptoms to recur. Many of these people didn’t need a patch once the IJV(s) were decompressed because the leaks healed on their own. In some cases, though, a new patch or patches had to be placed several months after surgery when “spiky leaky” symptoms weren’t subsiding.
I don’t have an answer as to why the FB ES gal had symptoms relief after a venogram. I actually developed visual migraines from my venogram, but thankfully they only lasted for about 4 days. Those may have been the result of the contrast used & they quit once the contrast was out of my body.
Dr. Costantino refers patients w/ IJV compression for a venogram before deciding about offering surgery, however, Dr. Liu uses a venogram to help him chart the course of surgery i.e. the results don’t play into his decision about whether surgery is warranted or not. I don’t recall if either of those doctors has a specific protocol they prefer for the venogram so getting it afterward might make more sense.
Do you know what the doc(s) in MN are planning to do that takes a week? A venogram takes several hours if it’s an angio/venogram, but certainly it doesn’t take a week.
Dr whealy in mayo clinic. They schedule testing and procedures for the entire week to make it easier for people who are flying in.
Myelograms/mri for scans, blood patch/em for procedures.
I do have more low pressure like symptoms, whereas ijv appears to be more high pressure like. I do get rebound high pressure after these procedures though. So maybe its a bit of both?
If you do have a CSF leak then that explains to more low pressure symptoms you have, as @Isaiah_40_31 says a patch might help temporarily; if it holds up then you will cycle back into high pressure because of IJV compression…& then it’s likely it will go again. Did we post info about spiky leaky syndrome for you before? If not here’s a link:
@Isaiah_40_31 Just to clarify, Dr. Liu does not base the decision to offer surgery on the angio/venogram. If you choose to have the procedure done by the team he works with, they perform it the day before surgery, after the surgery has already been approved by insurance.
I was actually worried about this beforehand because my symptoms are much better when I am lying down, and I was concerned the pressure issues might not show up during the study. I specifically asked about that and was told the results would not determine whether the surgery went forward. The angio/venogram is used for surgical planning and additional diagnostic information. The findings can further support the need for surgery, but they are not what determines whether surgery is offered.
Mine was for a different procedure the de-bridging of that arcuate foramen, but from my understanding this is how they proceed with eagle cases as well.
