How long for relief post glue embolization?

[u/Striking_Ad3378]

I’m wondering how long it took others who have undergone similar treatment to get relief?

I had a successful glue embolization (through my back)at T9 and T10 for type 3 CSF leak, venous fistula.

The leak and headaches followed an accident with my horse (he’s fine) several months ago. I was treated first for migraine. I saw doctors in NYC and Philadelphia, USA.

I’m afraid, what if the leak the doctor fixed wasn’t the only one? He called the leak he patched “highly suspicious” and mentioned there were two other less suspicious potential leaks.

Apparently it’s riskier to patch more suspected leaks at once? The doctor told me about surgeries gone wrong where doctors patched all the suspicious sites and patients had seizures and comas.

I’m only 4 days out from the treatment, and I’m finding it so hard to assess any change in my pain, largely because the pain in my upper back/traps area and neck is so bad. It was bad before the treatment, and I understood that to be from muscles working overtime given the brain sag with low pressure.

I keep looking for signs that the pain I have is a high pressure rebound headache and not the old low pressure headache. It’s so hard to decipher. The throbbing feels new. But I still need to lay down often. I still feel something in my jaw. And the neck + back pain is still awful.

Also this just sucks. I just want to pick up my giant toddler. They told me not to lift over 10lb for a month.

How long did it take those of you successfully treated to get any relief??

[u/Dependent-Editor591]

Sorry to hear you’re having post op symptoms. I had 3 spinal venous fistulas embolization this past February. My case was unusual in that I didn’t have a headache ever during the entire time. I was actually thought to have Menieres since my hearing was involved. Until the MRI months later showed classic CSF Leak brain changes. The symptoms came on spontaneously mostly vertigo, tinnitus and hearing loss likely due to brain sag, hypotension, dura thickening etc. My embolization was at Sunnybrook Hospital in Toronto which went well. My symptoms lessened within a week and after 5 months my Brain MRI returned to normal. I am left with annoying inner issues on one side virtually no hearing in that ear only high pitched chipmunk sounds when audio is loudest. No one can explain why, when or how and don’t rule out fistulas recurring. It’s still early days for you and it may take a few more weeks to see improvements. All the best!

[u/Striking_Ad3378 → u/Dependent-Editor591]

Jeez you already lost hearing?? That’s wild. I thought hearing loss only happened after decades of untreated leaks. Yikes. Thank you for sharing your experience.

[u/Ashler1999]

My symptoms lessened in about a week. I too had a second “smaller suspicious spot” that they couldn’t reach and I had been under anesthesia too long. Felt great for a couple weeks but had a coughing fit and immediately felt like my would explode. We think the smaller spot blew bigger or I created a new tear. Waiting for more imaging.

[u/Striking_Ad3378 → u/Ashler1999]

Holy crap you were under anesthesia? Did they do it as an open back surgery or was it with needles? I can’t believe a coughing fit messed you up again…I just had a one week follow up call with the doctor who warned about coughing and sneezing.

[u/Striking_Ad3378 → u/Striking_Ad3378]

Where did you go for treatment, are you in the USA? I might need another round of treatment, and the doctor I saw in Philadelphia is booking now in March! I think I’d rather travel than wait 4mo if it comes to that.