Thank you so much for these videos. Theyre so invaluable as a resource for all current and future leakers. Not sure if I told you but my ct myelogram was cancelled yesterday so im now waiting for another date. Its so common to see in the facebook group peoples procedures being cancelled. Its such a mental blow. Im just thinking of it as extra time to prepare. Just seeing you ok (well, not screaming or crying!) after your myelogram has helped me so much! Gives me the confidence to be positive about mine and that I CAN do it too! I hope you are healing well and maybe got some relief from the blood patch. Thinking of you x Fingers crossed its great news in 2 hours!
I did see your other comment!! Did you get it yet?!! It's so worth it to have the answers!!!!!! SO GLAD I DID IT! It's over SO quickly and most of it isn't bad!
@@MommingwithMigraine I had it done today and we found the leak! I'm now awaiting a date for surgery to fix it which could take months. My family members also watched your videos so they could get an idea of exactly what I was going to go through/went through. It really wasn't nice but in a way also wasn't as bad as I feared so I'm home now recovering. Another step closer to a resolution. Your videos...INVALUABLE!
@@MommingwithMigraine Yep, it exists!! Exists and has photographic proof of said existence! I had to be stuck twice as when trying my lumbar spine, she said my dura was so deflated from leaking that it was hard to stick so she had to move to my thoracic spine where it had slightly more tension and the needle was able to be placed properly. I nearly cried after the procedure when they rolled me onto my back again. The Dr said there's now clear images demonstrating the leak so I can see precisely what's been causing all my issues for so many years. It was then it hit me just how long I'd been suffering with this in one way or another and that now others can see exactly what it is too. I nearly lost it! I shed one tear then told myself to stop because I knew if I started crying...I don't think I'd have stopped. The validation! That's the biggest feeling right now, pain and VALIDATION. Can't wait for your next upload on your journey too! It's weird just how much your journey has been entwined with mine via UA-cam. Its a weird world!
I’ve had 2 mylograms and I was nervous as well but you need to relax and listen to the physician, I though mine would hurt but I had no pain only pressure you will be fine and the results you get will help you and the doctors. God Bless you and I’m praying for you.
You've said in an earlier video you have had pots for 4 year,did you gradually developed pots just as time went on for unknown reason or was there something that triggered the illness like injury or infection? and did you also developed multiple food intolerances along with pots?
@@erikavaleries which subtype of pots causes csf leakage? hyperadrenergic,hypovolmic or neuropathic pots? I don't have csf issues but developed food intolerances in just a few days
I had an outpatient myelogram in 1985, but no CT. Unfortunately, had to return for a patch inpatient and not move for 24 hours. Very unpleasant experience in its entirety. Thankfully technology has progressed.
@@MommingwithMigraine Can’t wait to hear your progress. My cisternogram is in 2 days and we might have found the leak on MRI. Cribiform plate in the ethmoid sinuses from previous surgery. My primary care dr found a weird note in the MRI report & told me to keep asking ENTs (six now!). This is a rollercoaster. Thank you for bravely sharing and fighting so hard. It inspired me to get to this point. Your attitude helps me stay positive.
If I could have one wish, it would be to talk to this woman one on one. I’ve been suffering (and suffering seems too light of a word) I’ve been to countless Doctors, specialists, allergist, ENT doctors, neurologists and a list of other professionals with absolutely no answers to my symptoms. I’m 54 years old and have been searching for answers the past 20+ years. I am at my wits end. My daily life is absolutely miserable Clogged, fullness, extreme sensitivity in my ears (often but not consistently) Wetness draining from my ears and literally water gushing from my nose (when I bend over) Allergist said tests show no allergies (they did two different stick tests months apart). Which is bizarre because I was tested 20 years ago and was allergic to a list of things. Extremely frustrating 😢 Is this what the rest of my life will be? I pray everyday for relief because my ears get very painful and it’s a living hell. 😢
May I ask when you say extremely sensitive do you mean to sounds? I have that, as well, crinkly bags of chips are the worst, amongst other things and I've been digging and digging into medial literature most of which I have to decipher by looking words up, but I'm not giving up. There is a reason we have these issues. The doctors don't seem to care about what's causing it, they just want to prescribe medication and send you on the way. I say we start going in with advocates and introducing them as such. "Hi Dr Smith this is my health advocate and she is here to help make sure I get well" kind of like a lawyer representing. It's hard to fight these doctors when we aren't feeling or thinking well.
@@micky-su6scI’m going through the same symptoms since 6 months ago along with severe neck pain.Recently I got a neck MRI done and they found I got cervical stenosis due to disc herniation,researching on internet I found that cervical instability causes all those ear symptoms most of them got resolved after you get your neck fixed by surgery
I KID YOU NOT I get my results in 2 hours!!!! 🎉😳😳😳💜💜💜💜💜💜
I hope it goes well!!
Good luck!!
Good luck
Sending lotsa love, super duper gentle hugs, and prayers for healing… and of course *The BEST RESULTS* ❤
Exciting!!!!
Thank you so much for these videos. Theyre so invaluable as a resource for all current and future leakers. Not sure if I told you but my ct myelogram was cancelled yesterday so im now waiting for another date. Its so common to see in the facebook group peoples procedures being cancelled. Its such a mental blow. Im just thinking of it as extra time to prepare. Just seeing you ok (well, not screaming or crying!) after your myelogram has helped me so much! Gives me the confidence to be positive about mine and that I CAN do it too! I hope you are healing well and maybe got some relief from the blood patch. Thinking of you x Fingers crossed its great news in 2 hours!
I did see your other comment!! Did you get it yet?!! It's so worth it to have the answers!!!!!! SO GLAD I DID IT! It's over SO quickly and most of it isn't bad!
@@MommingwithMigraine I had it done today and we found the leak! I'm now awaiting a date for surgery to fix it which could take months. My family members also watched your videos so they could get an idea of exactly what I was going to go through/went through. It really wasn't nice but in a way also wasn't as bad as I feared so I'm home now recovering. Another step closer to a resolution. Your videos...INVALUABLE!
@@Serenity7250 ARE YOU SERIOUS????!!!!!!! 😭😭😭 I am welled up with tears
@@MommingwithMigraine Yep, it exists!! Exists and has photographic proof of said existence! I had to be stuck twice as when trying my lumbar spine, she said my dura was so deflated from leaking that it was hard to stick so she had to move to my thoracic spine where it had slightly more tension and the needle was able to be placed properly. I nearly cried after the procedure when they rolled me onto my back again. The Dr said there's now clear images demonstrating the leak so I can see precisely what's been causing all my issues for so many years. It was then it hit me just how long I'd been suffering with this in one way or another and that now others can see exactly what it is too. I nearly lost it! I shed one tear then told myself to stop because I knew if I started crying...I don't think I'd have stopped. The validation! That's the biggest feeling right now, pain and VALIDATION. Can't wait for your next upload on your journey too! It's weird just how much your journey has been entwined with mine via UA-cam. Its a weird world!
It’s amazing that you had the wherewithal to vlog this. Thank you for making the effort to share. So excited to hear your results!
Thank you so much!! I was FREAKING OUT 😆
Thinking of you. I had my second blood patch this week and I’m praying this seals! Thank you for sharing your experiences and spreading awareness.
Sticky patch!!! 🙏🤞🤞🤞🤞🤞🤞🤞
I’ve had 2 mylograms and I was nervous as well but you need to relax and listen to the physician, I though mine would hurt but I had no pain only pressure you will be fine and the results you get will help you and the doctors. God Bless you and I’m praying for you.
It wasn't too bad... sucked for a little while but it was over so fast! I have a video coming soon to explain
thank you for the vomit warning. i am an extreme emetophobic and it was very appreciated!!
You're in good company here!
Praying for you, Jen!
Thank you!!! 💜🎉
This emetophobic appreciates the vomit warning!! Thank you!
You got it friend!!
same here xox
Really hope they find the leak!!! Good luck!
You've said in an earlier video you have had pots for 4 year,did you gradually developed pots just as time went on for unknown reason or was there something that triggered the illness like injury or infection? and did you also developed multiple food intolerances along with pots?
Whoa I developed weird food allergies with POTS/CSF Leak over several yrs. Eggs & hazelnuts
@@erikavaleries which subtype of pots causes csf leakage? hyperadrenergic,hypovolmic or neuropathic pots? I don't have csf issues but developed food intolerances in just a few days
Good job!! Hang in there!!
I had an outpatient myelogram in 1985, but no CT.
Unfortunately, had to return for a patch inpatient and not move for 24 hours. Very unpleasant experience in its entirety.
Thankfully technology has progressed.
Thinking of you ❤
Appreciate it Erika!
@@MommingwithMigraine Can’t wait to hear your progress. My cisternogram is in 2 days and we might have found the leak on MRI. Cribiform plate in the ethmoid sinuses from previous surgery. My primary care dr found a weird note in the MRI report & told me to keep asking ENTs (six now!).
This is a rollercoaster. Thank you for bravely sharing and fighting so hard. It inspired me to get to this point. Your attitude helps me stay positive.
Praying for you
Thank you!!!!!!
was the vomiting from symptoms or just nervousness?
Symptoms 😮💨
If I could have one wish, it would be to talk to this woman one on one.
I’ve been suffering (and suffering seems too light of a word)
I’ve been to countless Doctors, specialists, allergist, ENT doctors, neurologists and a list of other professionals with absolutely no answers to my symptoms.
I’m 54 years old and have been searching for answers the past 20+ years. I am at my wits end. My daily life is absolutely miserable
Clogged, fullness, extreme sensitivity in my ears (often but not consistently)
Wetness draining from my ears and literally water gushing from my nose (when I bend over)
Allergist said tests show no allergies (they did two different stick tests months apart). Which is bizarre because I was tested 20 years ago and was allergic to a list of things.
Extremely frustrating 😢
Is this what the rest of my life will be? I pray everyday for relief because my ears get very painful and it’s a living hell. 😢
May I ask when you say extremely sensitive do you mean to sounds? I have that, as well, crinkly bags of chips are the worst, amongst other things and I've been digging and digging into medial literature most of which I have to decipher by looking words up, but I'm not giving up. There is a reason we have these issues. The doctors don't seem to care about what's causing it, they just want to prescribe medication and send you on the way. I say we start going in with advocates and introducing them as such. "Hi Dr Smith this is my health advocate and she is here to help make sure I get well" kind of like a lawyer representing. It's hard to fight these doctors when we aren't feeling or thinking well.
I wish I had the answers for you, I'm so sorry for how much you've gone through 😔
@@micky-su6scI’m going through the same symptoms since 6 months ago along with severe neck pain.Recently I got a neck MRI done and they found I got cervical stenosis due to disc herniation,researching on internet I found that cervical instability causes all those ear symptoms most of them got resolved after you get your neck fixed by surgery
Praysrs for answers!
Thank you endlessly!!
Thank you for the trigger warning!
You bet!
I don't know why, but I really expected you to drink that olive oil. Gwyneth Paltrow has ruined me.
Hahahha!! Never in a million years!