I am leaker too since 9 months(happened during child birth with spinal Anastasia). I had two blood patches. They gave temporary relief. But, the leak is not showing in imaging. My life has been hell ever since. Please let me know the if this procedure has helped you? whether it showed the leak location? If blood patching helped you this time?
This video was perfect as we are driving to London to get my ct myelogram tomorrow. I have the same worry about the dye hitting my brain. I want to know everything you went through, but also dont want to know anything! I hope everything went perfectly and youre now recovering well. Wish me luck for tomorrow!
The needle part is not bad. The dye does burn but it's over so fast, then you get your answers. I was much LESS nervous the 2nd day. You can do it! Good luck!!
@@MommingwithMigraine Thank you, I got a call earlier saying its cancelled for now as the Dr is unwell. So I'm still waiting. I worked myself up so much and my heart dropped when my phone rang and I saw the hospitals name on caller ID. Oh well, I might get to see your video before my procedure after all! Thank you for making these videos covering this topic, they really are invaluable.
@@antoinettecaraway1384 I have a big ventral dural tear that will require surgery to close it. I wonder if they can do stem cell injections after surgery to boost the healing?
I hope this works out well for you, asvI sit here contemplating the same procedure (as my migraine is kicking me and my ears are ringing like crazy. I want my leak found also.
Quick question: how do you know for sure that you only have one leaky spot? Say you found a leak on the first day on your right side, why is that a reason to cancel the left side? what if you have 2 leaky spots? or is this not a thing that can happen?
Good luck on your trip! I’ll be thinking of you! They better find that leak!! My Cisternogram is next week and I’m so anxious I could bust. I think it’s cranial because I’m super leaky. I am trialing Diamox and it helps, so that might be a clue I don’t know how you do it all! We are with you ❤❤❤ How cool that you have a lift free baby setup!
So glad you are home. I have been following your channel for a long time... last year my daughter was diagnosed with hEDS, severe POTS and now is being evaluated for Chiari I and CFS leak possibilities. Your recent experiences are just what we need! Thank you for sharing your journey so we are not going into this blind!!
WELCOME home! I hope you're feeling better! P.S. When you moved into the LR I thought, "I can't look at that glaring window" and then you closed the blind. Hahahaha
My parents would drug me instead of helping me with my csf leak and it's most likely cranial. Also bf would cheat on me while I was sick from a leak so sad. I am seeing a neurologist soon about my csf leak and I am hoping I can get revenge by never speaking to my family again for basically leaving me to die. I am convinced my leak is cranial due to a nose fracture but it might be spinal
I appreciate these vlogs. My heart aches thinking how many of us struggle and are gaslit by coworkers, friends and family. I am Diagnosed with hEDS, POTS, arachnoid cyst, self dx with migraines, probably have IIH, mostly near my periods when of course BP and blood levels drop. Because of you I treat it more aggressively, ice my face, my eyes as I often get pain there, around the eyes, scary to realize it could cause blindness! I am going to at least see Neuro, soon, didn’t realize how lucky I was in California, I saw Neuro for my shoulder and looking back- he CARED, HE Brought up hypermobility, he knew… he totalky knew, while I had no idea what EDS or POTS were, I just always smiled and laughed about how I was generically screwed up and dislocated joints and things, he knew my neck was the culprit and my hypermobility, oh his face when I showed him how far back my head can go!. I guess if I do have IIH, the MRI already shows where the leak is… I had many surgeries and epidural to help me not be on so much stuff, since I have trouble breathing around surgeries, that likely made everything worse, but it could be worse as they only were looking at my lower abdomen, never had an MRI pf my whole spine or CT, my neck is awful, but again- I tried neck braces when I was working at a computer and it helped with the migraines, it’s just so hard to keep my neck stable, so hard… EDS whoas.
![ได้เวลา! พาน้องแฝดฉีดวัคซีนครบ 1 เดือน🫣 [cc] แดนแพทตี้ SS2 | EP.52 |](http://i.ytimg.com/vi/IzeLtaXBLNE/mqdefault.jpg)
I'm home safely and recovering well! 🎉 Procedure day vlog is coming on Friday & CT Myelograms procedure experience story next week 💜
Thank you for the update. I’m so happy everything went well. ❤
Hope you get an answer
I am leaker too since 9 months(happened during child birth with spinal Anastasia). I had two blood patches. They gave temporary relief. But, the leak is not showing in imaging. My life has been hell ever since. Please let me know the if this procedure has helped you? whether it showed the leak location? If blood patching helped you this time?
This video was perfect as we are driving to London to get my ct myelogram tomorrow. I have the same worry about the dye hitting my brain. I want to know everything you went through, but also dont want to know anything! I hope everything went perfectly and youre now recovering well. Wish me luck for tomorrow!
The needle part is not bad. The dye does burn but it's over so fast, then you get your answers. I was much LESS nervous the 2nd day. You can do it! Good luck!!
@@MommingwithMigraine Thank you, I got a call earlier saying its cancelled for now as the Dr is unwell. So I'm still waiting. I worked myself up so much and my heart dropped when my phone rang and I saw the hospitals name on caller ID. Oh well, I might get to see your video before my procedure after all! Thank you for making these videos covering this topic, they really are invaluable.
go get stem cell treatments done for CSF you'll be feeling great in 2 weeks and it's just 4 injections that's it ❤
@@antoinettecaraway1384 I have a big ventral dural tear that will require surgery to close it. I wonder if they can do stem cell injections after surgery to boost the healing?
I hope this works out well for you, asvI sit here contemplating the same procedure (as my migraine is kicking me and my ears are ringing like crazy.
I want my leak found also.
Quick question: how do you know for sure that you only have one leaky spot? Say you found a leak on the first day on your right side, why is that a reason to cancel the left side? what if you have 2 leaky spots? or is this not a thing that can happen?
I'm sure it's possible, my best guess is that it's just so rare
Do you have a special diet?
I do have food restrictions. Search for the video called something like "foods I avoid for migraine" on my channel!
Your kiddos nicknames should be Angel face and Bitsy. They are adorable!
Good luck on your trip! I’ll be thinking of you! They better find that leak!!
My Cisternogram is next week and I’m so anxious I could bust. I think it’s cranial because I’m super leaky. I am trialing Diamox and it helps, so that might be a clue
I don’t know how you do it all! We are with you ❤❤❤ How cool that you have a lift free baby setup!
So glad you are home. I have been following your channel for a long time... last year my daughter was diagnosed with hEDS, severe POTS and now is being evaluated for Chiari I and CFS leak possibilities. Your recent experiences are just what we need! Thank you for sharing your journey so we are not going into this blind!!
Hoping all of this gives you the answers you need.
WELCOME home! I hope you're feeling better!
P.S. When you moved into the LR I thought, "I can't look at that glaring window" and then you closed the blind. Hahahaha
Hhaha neither of us was into that window =P
My prayers will be with you and babies and hubby. 💞
My parents would drug me instead of helping me with my csf leak and it's most likely cranial. Also bf would cheat on me while I was sick from a leak so sad. I am seeing a neurologist soon about my csf leak and I am hoping I can get revenge by never speaking to my family again for basically leaving me to die. I am convinced my leak is cranial due to a nose fracture but it might be spinal
Good luck with the neurologist honey
I appreciate these vlogs. My heart aches thinking how many of us struggle and are gaslit by coworkers, friends and family. I am Diagnosed with hEDS, POTS, arachnoid cyst, self dx with migraines, probably have IIH, mostly near my periods when of course BP and blood levels drop. Because of you I treat it more aggressively, ice my face, my eyes as I often get pain there, around the eyes, scary to realize it could cause blindness! I am going to at least see Neuro, soon, didn’t realize how lucky I was in California, I saw Neuro for my shoulder and looking back- he CARED, HE Brought up hypermobility, he knew… he totalky knew, while I had no idea what EDS or POTS were, I just always smiled and laughed about how I was generically screwed up and dislocated joints and things, he knew my neck was the culprit and my hypermobility, oh his face when I showed him how far back my head can go!. I guess if I do have IIH, the MRI already shows where the leak is… I had many surgeries and epidural to help me not be on so much stuff, since I have trouble breathing around surgeries, that likely made everything worse, but it could be worse as they only were looking at my lower abdomen, never had an MRI pf my whole spine or CT, my neck is awful, but again- I tried neck braces when I was working at a computer and it helped with the migraines, it’s just so hard to keep my neck stable, so hard… EDS whoas.
Who did you see ? We are diagnosed w the same stuff.
i hope everything has/will go well for you and i hope you get an improvement from this. thanks for documenting your journey so far. good luck
Thanks so much! This was all for imaging only. It went well, I get results later this week and I'll update you when I can!