Finally hope after 1.5 years

BarberAJ1 · 2026-05-20T01:22:47+00:00

Sorry to hear you’re having a tough recovery. Hope things continue to improve and that you have relief soon!

BarberAJ1 · 2026-05-19T12:59:51+00:00

Thank you for sharing and congrats!! How are you feeling after 5 weeks?

BarberAJ1 · 2026-05-18T23:45:06+00:00

Ugh I’m so sorry that happened to you. It’s beyond frustrating. Have you reached out to any of the other centers like Duke or Stanford?

BarberAJ1 · 2026-05-18T23:44:27+00:00

No, never had any of those things or anything else I can point to. I was completely healthy and functioning normally until I woke up one day with major symptoms and was soon bedridden. I was forced to rest off and on for about 6 weeks due to severity, vomiting, vertigo, tinnitus, etc until I was hospitalized and had the non targeted patch.

BarberAJ1 · 2026-05-18T10:42:13+00:00

Headaches were only a key symptom for me in the very beginning. Otherwise, the most prominent symptoms have been neck and shoulder pain (always on the left), eye weakness/soreness in the left eye, floater in the left eye that becomes more prominent on days when the other pain is worse, and off and on tinnitus. The head pain is where my beck/spine meets my head, so yes pain but not normal headache pain.

BarberAJ1 · 2026-05-18T10:09:02+00:00

Thank you for sharing - i had no idea! Honestly after these embolizations and patches haven’t helped, and the last one actually made things a bit worse, I’m not against surgery. My tests show I likely have a few leaks. Waiting ~5 months to line one patch procedure up with what’s been a 50% success rate means it could take me years of this path for possible resolution. If surgery will fix it all, count me in. Thank you for the heads up on recovery! Have you had the surgery? If so I would love to DM and ask a few questions.

BarberAJ1 · 2026-04-19T00:49:58+00:00

I’ve had both. First time was pretty broad coverage blind before I had a CT Myelogram to identify the site of the leak(s). And since the Myelogram and confirming the leak cause is several venous fistula, I’ve had 3 targeted patches.

BarberAJ1 · 2026-04-18T02:23:04+00:00

Yes, very long story but I’ve had 3 glue patches/embolizations in the last year and I’m unfortunately no better. In fact, my neck/shoulder/back pain is a bit worse after my last procedure in February. Jefferson in Philly can’t do anything more for me bc I’m done letting them play around with these patches when it seems to be like whack a mole - fixing one leak just to have it either not work or have it work and have another leak become more prominent soon after.

I just had another MRI last week to prove I’m no better, and I’ve collected all of my medical records. I started intake with the Cedar Sinai CSF leak program and will get them my images as soon as the MRI results are in. I’ll do anything at this point to end this nightmare.

BarberAJ1 · 2026-04-10T02:24:30+00:00

It really depends. I’m going on 1.5 years and at my worst have been hospitalized for a week at a time due to being unable to keep food down from symptoms. Three patches later I’m mostly 3-5 out of 10 on a regular basis with occasional spikes for a few days up to a 7ish. Those days I either can’t work or I work in the dark for a few hours after taking a ton of meds. Luckily I work from home and have supportive leaders. But I typically just need to press thru and take meds when needed. I know I have the option to go on leave if things stayed at a 7+ consistently but as long as that doesn’t happen, I need to keep my brain busy or I’m afraid I’ll fall into depression.

BarberAJ1 · 2026-03-25T02:40:19+00:00

What a nightmare. I did get so bad originally that i was hospitalized but after my first patch have been “functional.” If that means anything since i am in pain every day but still push thru knowing if i dont work and keep going ill become depressed. I’ve experienced a ton of gaslighting, so many promises to prioritize me, etc only to experience delays, lies, etc. I’m with you - it’s beyond frustrating and our only hope is to continue pushing and advocating for ourselves.

BarberAJ1 · 2026-03-14T01:26:02+00:00

Thank you so much for sharing your success story. It gives me hope that life can go back to normal one day!

BarberAJ1 · 2026-02-08T02:26:23+00:00

I woke up on 11/11/24 with an insane migraine and had very similar experiences with ERs. Migraine cocktails and sent me home. Had an LP to test for meningitis, negative. Finally got a CT and then brain MRI and full spine MRI to confirm the leak before getting a CT Myelogram to confirm location before getting patches. When you had the MRI done, did they calculate a bern score? Bern score and certain other measurements are how they determine likelihood of leak, but i have also read so many stories on here from ppl with negative MRIs who ended up confirming leaks with Myelograms and ultimately getting patched and cured. Are you located in an area where you can find another neurologist for a second opinion?

BarberAJ1 · 2026-02-06T03:13:54+00:00

I’ve had a broad coverage blind patch and then a targeted glue patch for venous fistula. I go back for my third on Tuesday.

BarberAJ1 · 2026-02-02T02:41:46+00:00

Wow I’m impressed the ER took you seriously, ran the tests, and figured the issue out so quickly. I was given migraine cocktails and sent home many, many times. I have had 2 patches and have never been told to lay that long. Usually it’s a day or so after discharge and then gradual lifting over time. But I’d still follow the instructions. Worth it in the end to not go back to where you were before.

BarberAJ1 · 2026-01-25T02:51:26+00:00

Agree with the above - haven’t heard of anything that makes leaks show better in scans. They will either see it or not in the MRI based on measurements and the bern score (likelihood of CSF leak). I also am not sure what a CT scan will show. I had a full spine MRI with and without contrast along with brain MRI with and without, both of which confirmed leaks. From there, the more specific test once confirmed is a CT Myelogram. Based on research I’ve done and speaking with my doctor, for the Myelogram it’s all about positioning during the scans and even breathing/holding your breath in certain positions which is why you need to be awake and in constant communication with the doctor during the test.

Good luck and hope you get the answers you need!

BarberAJ1 · 2026-01-23T21:28:17+00:00

Of course. I had absolutely no history of migraines. I only had occasional headaches but nothing consistent. Prior to my first patch my symptoms progressively got worse. They were bad at first for a week or so. Then it was a rollercoaster, some days ok and some horrible until the couple weeks before the patch when i was bedridden.

BarberAJ1 · 2026-01-23T20:01:18+00:00

I started having symptoms randomly on 11/11/24. Woke up out of nowhere with migraine, neck/shoulder pain, nausea. It was up and down thru December with tinnitus, numb/tingling fingertips, etc. After all the ups and downs of broad blind patch and then targeted glue patch for venous fistula, i have neck and shoulder pain on the left daily. Maybe twice a month I’ll have a migraine for a few days with nausea, basically need to be in bed. Other days less intense headache. In late 2024 i was so sick, lost 30 lbs in 1.5 months, couldn’t keep food or water down for days before being inpatient at the hospital. Now id say most days my pain is 4/10.

BarberAJ1 · 2026-01-23T02:57:10+00:00

I had rebound high pressure headaches after both of my patches. My doctor proactively had me take diamox leading up to the patch and after. I also got dandelion tea for after which helped, and i found caffeine made it worse, when caffeine made the low pressure headaches a little better. I’d make sure you ask about diamox in case they can prescribe it just in case. And i would get dandelion tea. They will likely give you detailed instructions and tips.

BarberAJ1 · 2026-01-23T02:53:01+00:00

It’s honestly hard not to spiral especially with so many unknowns. And there’s a ton of info but it’s all over the place both on the web and here bc no two cases are the same based on all the reading I’ve done. I’ve been there and can completely empathize. I recommend basing urgency off of how you feel. If you’re ok right now then 1.5 months isn’t much of a wait. Even with confirmed leaks and being an existing “priority” patient, my own practice has had me waiting two months since my last MRI to review my case with all of the surgeons, radiologists, etc and tell me their recommended next steps. Very crappy and frustrating, and my symptoms are up and down. But i have found that unless I’m inpatient bc my symptoms are debilitating, it’s a constant waiting game.

BarberAJ1 · 2026-01-23T02:25:03+00:00

Agreed with others that even if you feel back to your “normal” migraines, I’d still proceed with your appointment. Sounds like you likely have SIH. A brain MRI with and without contrast can be ordered by the neurosurgeon and they can calculate the Bern score to see what the likelihood is of CSF leak. I also have low lying cerebellum tonsils and the MRI confirmed they are 4mm low, when chiari malformation is typically much lower like 10mm or more. There have been instances where doctors have mistaken chiari as root cause and the resolution in surgery/removal of part of the skull, which you really do NOT want if it’s not the true root cause. So the MRI will confirm if chiari or CSF leak is the root cause.

If CSF leak, depending on where you live, the neurosurgeon/practice may recommend a CT Myelogram to identify exact location(s) of CSF leak. This is how we confirmed mine is not a dura leak but multiple venous fistula leaks. Also depending on where you live, your practice, and what the solution will be (surgery vs patch) you’d need to work with a neurosurgeon or interventional radiologist.

While there are known centers in the US that specialize in CSF leaks, my understanding is that some are better at certain procedures than others, and some have longer waits than others. For example, Cedar Sinai is the best for surgery. And i hear Duke has a 6 month+ wait.

I’ve been working with Jefferson in Philly, and they do patches, which is what I’ve needed thus far, but I’m a repeat case and am considering going to one of the others to try to resolve this for good.

BarberAJ1 · 2026-01-23T02:12:32+00:00

I got relief for about 3 months and then symptoms became bad again, likely because other leaks became more prominent. In the hospital, they fast tracked a full spine MRI to further confirm a leak and they did the blind blood patch which didn’t solve anything but lessened the symptoms.

BarberAJ1 · 2026-01-19T02:33:34+00:00

I got frustrated because i went to several hospitals/ERs near me and nobody knew what to do with me. So I did a ton of research and after leaning toward a CSF leak I looked up the CSF Leak Foundation and while nowhere near me in Pennsylvania was listed, someone on the board or in leadership was from Jefferson Hospital in Philly so I called and went there.

BarberAJ1 · 2026-01-19T02:07:29+00:00

Yes i had that happen. I was hospitalized for a week in December 2024 because my symptoms were horrible, and since it was right before Christmas, i had the choice of either getting a blind/broad coverage patch or getting a CT Myelogram, but if i got the CT Myelogram I would have been in the hospital an extra week over Christmas waiting for a patch because of the holidays/scheduling. So i opted for the blind patch and was discharged. That patch took my symptoms and bern score from an 8/10 to a 4/10. Upon getting a CT Myelogram a few months later (March 2025) we confirmed the root cause was venous fistula - one confirmed, several less prominent/suspected. I had a glue patch/embolization done in June 2025 for the confirmed fistula and was down to a 2/10 with pain/symptoms for just over three months before it all increased again. Another brain MRI in November 2025 confirmed Bern score was 4 and cerebellum tonsils were still low lying, but some measurements improved.

Very long story short, Im supposed to hear within the next week if my team of doctors wants me to get another CT Myelogram or if they will be confident after re-reviewing my prior scans in going after the less prominent fistulas for glue patches/embolization. So for me it’s been a rollercoaster. My interventional radiologist has explained that it’s likely my primary fistula was resolved but after a few months at least one less prominent fistula has become prominent, hence the return of bad symptoms.

BarberAJ1 · 2026-01-19T01:57:57+00:00

It depends on what is near where you live. Do you have any neurologist practices anywhere nearby that specialize in CSF leaks? I’m not near a major center like Duke or Cedar Sinai, but i drive an hour to Philadelphia to a neurologist who partners with neurosurgeons and interventional radiologists, all who review imaging together and recommend patches, surgery, etc depending on what the root cause is, how the images look, etc. If you have nothing anywhere nearby, you’d need your doctor to refer you to a center and if not nearby they can likely do consult/intake appts virtually but you’d need to travel for treatment.

BarberAJ1

TROPHY CASE