Hello family! Sorry it’s been so long since ive been in touch. If you recall, I had MVD surgery 6/22. Was doing pretty well postop, then had a CVST 8/22. The brain blood clot caused intracranial hypertension and papilledema. I had emergency surgery for LP dhunt placement 11.2.22. Ever since shunt placement, i went into low brain pressure symptoms. By December 1, 2022 my doc agreed it was low pressure symptoms but thoight it was because i was still adjusting to the shunt. On 1.10.23 i was in the hospital with low pressure again. I had a spinal tap with opening pressure of 6, and signs of intracranial hypotension on head ct. They swapped my shunt valve but that didn’t fix the low pressure. On 2.10.23 went to hospital again with low pressure symptoms. Spinal tap opening pressure was 5 and brain mri showed multiple signs of intracranial hypotension. After much begging, a lower spinal mri was done. It showed evidence of a possible leak, though my medical team wasnt vonvinced. They reluctantly did a blood patch 2.14.23 after which i had 10 great days. A repeat mri showed hypotension was improved. Unfortunately the symptoms came back. My complaints of low brain pressure symptoms fell on deaf ears with my medical team. After weeks of vomiting and terrible symptoms, i was direct admitted to hospital. My neurologist decided to do new brain and full spinal MRIs. Results showed signs of intracranial hypotension and a csf leak. Finally after 5 very long months my medical team realizes Im very sick with a csf leak. Its crazy because ive had hard data of a csf leak for 3 months, yet medical team not convinced until the most recent scans done 4 days ago. Ive suffered immensely because my team wouldn’t listen.
Meanwhile, early last week i submitted my paperwork and scans to csk clinics at Duke and Cedars Senai. I got an email from duke saying i definitely have a leak and need seen asap. I also received a call from Dr Schievink at Cedars, who confirmed a leak. Both of these, within 5 days of submission. Yet my local team have been doubting things. And theyre all looking at the same scans. Im finally scheduled to get a blood patch today locally. Im praying for improvement so i can get to Duke or cedars for further workup.
So sorry that you’ve been suffering with all this, really awful…will pray that the latest blood patch works and you have some better days, and that you’re able to see some more expert doctors than your local ones. Sending you a virtual hug & praying
Really praying for you to get better. Whatever happen to the surgery to reopen the IJV+Sigmoid sinus that was compressed by the bone craft placed during MVD? Could it be that you were already leaking CSF prior to LP shunt placement? I hope things improve for you.
@1speechpick - You’ve been on my mind a lot recently. I intended to check in on you soon. I’m so sad to read about all you’ve been through & especially since you last posted. I’m relieved to know that both the Duke clinic & Dr. Schievink responded quickly to your need for prompt help. I will also be praying that the blood patch holds so you can get a more in depth study to find & resolve what’s causing your current situation.
The saga continues. I went to duke. With a ct myelography they found a massive csf leak where the lp shunt catheter goes into the dura. Likely been there since shunt placement november 2022. Duke did a blood patch but it didnt work.
I AM SO SORRY!! You & @JustBreathe should have a conversation about CSF leak repair. She has been down a similar path. You can start a private message with her by clicking on her screen name as it appears above one of her posts.
Here’s a link to a thread where she’s posted so you don’t have to search for her.
No CSF leak prior to the LP shunt surgery, as my pressure was actually high instead of low, prior to the LP shunt placement. I got several other opinions, and all felt the risks of bone flap surgery outweighed the benefits.
I think I last updated this forum in mid-late March. I ended up needing to go to Duke University CSF Clinic. There they diagnosed a massive lumbar CSF leak where the LP shunt catheter went into the spine. When I was at Duke my opening pressure on the spinal tap was 4…yes, you read that right…4. Dr. Gray tried patching but it didn’t hold. I was sent home. I ended up needing 2 laminectomies and a vp shunt in order to get the leak to seal. Finally I’m sealed and am still trying to recover. They think all the clots have dissolved but more imaging will be done late summer. I hope everyone is well.
I’m glad the doctors at Duke were persistent in working to stop your CSF leak. An opening pressure of 4 is crazy low. You must feel at least somewhat better now that your CSF system is no longer leaking but what an ordeal to get it stopped. I’m praying for you to heal completely & for no more “excitement” with your health. You’ve certainly had enough for this lifetime!
I’m so sorry you had to endure this road, as have I. My LP shunt (lumbar catheter) failed requiring laminectomy and large pseudomeningocele repair. The needle they use to place the lumbar LP shunt catheter is huge. Glad you are on the other side and I’m send healing in buckets your way!
