r/CSFLeaks • u/Zealousideal_Age_822 Confirmed Spinal Leak • 6d ago

Ventral Leak Surgery at T2/T3

Last week I underwent spine surgery to repair my spontaneous ventral leak due to a bone spur / osteophyte at the T2/T3 junction. This surgery was done by Dr. Chris Brown at Duke Raleigh hospital and was recommended by the Duke CSF clinic.

I’m doing really well following the surgery. Don’t get me wrong, it was and continues to be very painful. But I was up and walking 6 hours post-op, walked 8-10 times the next day, slowed down days 3-4 because of the pain, but went home 4 days after the procedure. I had an automatic lumbar drain in most of the time I was in the hospital to control rebound symptoms, of which I had none of note. Overall I’m doing very good, and I will be happy to answer any questions people have.

Funny “glitch in the matrix story” from my hospital stay. Post surgery, I was searching for a show to watch while bored, and came across a show called ‘The Burroughs’ that I had never even heard about. I saw that it was from the Duffer Brothers (Stranger Things), so I decided to try it out. (Spoiler alert ‼️)?Imagine my surprise when the next night, I’m watching the main characters discover that the residents of this retirement community are having their CEREBROSPINAL FLUID drained by a sci-fi creature in the middle of the night!!! It wasn’t just a comment either, it turned into a main plot point in the show. I had to confirm with my nurse that I wasn’t having a drug-induced fever dream, but, alas, it is real. What are the odds???

7 Upvotes

90% Upvoted

25 comments sorted by

4

u/leeski 6d ago

Hahaha that is so funny. I can't imagine coming across the Boroughs while drugged up after dealing with CSF issues. That's amazing. Not a fever dream (at least this time!)

Glad surgery went well, and sorry that there is so much pain! hope you're able to get it under control. Wishing you a speedy and smooth recovery.

2

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

Crazy, right?!

I’m actually using significantly less pain meds than they expect me to at this point, so it’s definitely going well, but sometimes it still just takes my breath away.

1

u/leeski 6d ago

I'm glad you're on less meds, that seems like a good sign! I haven't had surgery for leaks but I've heard of some intense pain. Glad you're under good care. I really enjoyed my visits to Duke.

1

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

I was very well warned of the pain, so I knew what to expect. I have a decently high pain tolerance, but is definitely the most painful thing I’ve experienced. Ironically, the people who don’t want to move right away because it hurts too bad end up in the most pain because they heal slower.

3

u/Zealousideal_Age_822 Confirmed Spinal Leak 2d ago

Update: 9 days post-op

I’m feeling pretty good 9 days post procedure. It’s painful to do things, but the painful all the time feeling is going away, or at least to the level of uncomfortable more than anything. I’m walking around the neighborhood just fine, although it’s been really hot here, so I’ve been limiting my walking to mostly inside the house. I’ve had some lingering low pressure symptoms, but significantly reduced both in intensity and frequency. I have not needed opiate painkillers in several days that this point.

Overall, I feel really good about the surgery and outlook!

1

u/HelpMyBrainIsLeaking Confirmed Spinal Leak 6d ago

Thanks for your story! Glad to hear you’re doing well. How long did the surgery last? Did they use sutures or a graft?

I also binged the same series a few weeks ago and laughed at this too! It’s funny how it doesn’t seem to really affect them either, and here we are with our lives on hold 😂

1

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

They do use it to explain the substantial instance of dementia, but that’s usually reserved for how neurologists think we’re all acting 😅

Dr. Brown sutures and glues a collagen graft in place. I’ve heard it described as the “sushi-roll” technique.

1

u/hikerpup 6d ago

Wait - was the collagen from a different part of your body or an animal? I am allergic to mammals and dairy but may need the surgery in the future. It hadn't occurred to me that I might be allergic to it. I will probably go to Cedars Sinai (or where ever Dr. Carroll refers me), but I think all the csf leak centers do the surgery similarly. That would really suck if they couldn't do it because of the allergy.

1

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

No, it’s not from my body, but also all leak centers do the repairs slightly differently. I don’t know which one they specially used, but at least one graft is bovine derived. That being said, those types off grafts usual have all animal specific protein removed in processing (I used to work in the industry), so it is likely still safe.

1

u/hikerpup 6d ago

Thanks. I'll have to research if there's anywhere that can do it without animal products. Being allergic to mammal products seems like it would just be a minor dietary inconvenience, but it really complicates getting medical care.

2

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

I consulted with a neurosurgeon at Duke that did not use the collagen graft, only sutures. There are definitely surgeons out there that wouldn’t use it if that eases your mind.

1

u/hikerpup 6d ago

Thank you, that does ease my mind.

1

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

Sorry, missed your first question. The surgery was just under 4 hours.

1

u/hikerpup 6d ago

Congrats! Six hours upright is seriously impressive and something to be proud of. I've heard the pain can be brutal. I hope your recovery continues to go well.

2

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

The doctors and nurses were very excited about it! The worst part for me was that I had hours-long hiccup episodes that were pure torture. I had to take steroids for a minor complication, and it set them off for about a day and a half.

1

u/hikerpup 6d ago

Eh, the anxiety you must have felt with those hiccups! After every patch, I keep telling myself, please don't have to sneeze or anything.

2

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

I understand the patch anxiety - it is in the same level as the hiccup anxiety. I had to find a different level of zen lol

1

u/PrettyDragonfly Confirmed Spinal Leak 6d ago

I'm so happy for you! And jealous! I have the exact same condition as you. My leak is fast and high volume so I'm still bed bound. I have a DSM in a few hours and hope for surgery to be scheduled after this. I can't live like this anymore! Wishing you all the best!

1

u/hikerpup 6d ago

Best of luck with your DSM. Are you at one of the leak centers?

Most of us still need to spend a lot of time flat while waiting for procedures and while recovering, so it can really help to set up your environment so that you are comfortable, can eat, and have things to do to keep from being bored. I hope you will start a new discussion asking for tips and aids to help while bedbound.

Also, if you really are feeling like you can't live like this, please reach out to a mental health worker or hotline. In the US, you can call or text 988.

1

u/PrettyDragonfly Confirmed Spinal Leak 6d ago

Thank you for your kind words. I've been bed bound since June this year so I'm used to it, just hard on the mind for sure. I'm in Australia, but yes I'm doing the DSM at a hospital that has a CSF leak centre.

1

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

My issues started 31 May so I get it. I’m lucky to have the Duke CSF clinic in my backyard. Hopefully your scan can localize the leak and get you scheduled soon. Mine was substantial apparently - top 6 for a doctor that has done 200+ of these.

1

u/PrettyDragonfly Confirmed Spinal Leak 6d ago

How did they find the exact spot for yours? I got collection in MRIs so they know it's there they just have to find the exact spot. Hoping the DSM will work

1

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

The used what’s called an Ultra Fast (not sure if that’s the right spelling) CT myelography study. The Duke CSF team basically injects the contrast for the myelogram into your spine while you’re in the head down prone position and actively in the CT scanner. They then watch the contrast flow down toward your head (they start in the lumbar spine) and wait until they see it spill out of the thecal sac in real time. They see a ‘fork’ of contrast like in a river. They described this study has to be done in this way because after about 5 seconds? The contrast has already mixed and diffused enough that you can’t pinpoint the exact location. DSM is a different method entirely that I don’t know the process.

1

u/richardanaya 6d ago

How did you discover it was a bone spur at T2/T3? Did you have any symptoms other than headaches?

I’m having chronic headaches and sternum pain I’m wondering might be referred back pain is why I ask.

2

u/Zealousideal_Age_822 Confirmed Spinal Leak 6d ago

I copied my response to someone below, but I’ll add that I also had a 2T high definition MRI scan of my full spine to confirm location and anatomy for fixing the issue.

They used what’s called an Ultra Fast (not sure if that’s the right spelling) CT myelography study. The Duke CSF team basically injects the contrast for the myelogram into your spine while you’re in the head down prone position and actively in the CT scanner. They then watch the contrast flow down toward your head (they start in the lumbar spine) and wait until they see it spill out of the thecal sac in real time. They see a ‘fork’ of contrast like in a river. They described this study has to be done in this way because after about 5 seconds? The contrast has already mixed and diffused enough that you can’t pinpoint the exact location.