if money was no object I would probably do the riskier option with potentially higher reward, but I have had a ton of surgery and many of them went to shit, so the less procedures for m the better. B can see how you would want to try the safer option first,and in this case I think it´s smart to try out every avenue .
I am so sure that you are finally feeling validated. It's great that you finally found a doctor who really listened to you. I myself suffered from migraines from the age of 20 to 67. I finally got to see a neurologist because my eye doctor believed I had suffered a stroke. The neurologist told me that the drug Relpax (which I took to help relieve me from some of the migraines but didn't really work very well told me that Felpax causes strokes and he wanted me off of it. I told him that the drug was the only one that gave me any relief. He put me on Botox shots n my scalp and I haven't had a migraine in 3 years. Life is so much better now since I don't have to spend hours in a dark room suffering. I have been watching your channel for a couple of years now because when I found you I felt a kindred connection. Keep at it girl, you are your own best supporter and your channel helps others find their own way to deal with their own migraines.
AWESOME!!! Good for you! I think what you say about who is looking at the test is important. My "unremarkable" CT scan is anything but. I don't ever talk about migraines on my channel, but I might need to start documenting. Wishing YOU all the BEST with this procedure!
This has been a helluva ride! I will continue lifting you in prayer! Oh my goodness, there is so many arrangements to be made and finalized! I am so happy this day has come!!! What a relief you must be feeling, plus a million other feelings as well! 🎉❤
So so happy for you. I totally agree that docs who give you data like this, allowing you to make informed decisions are the best! And even though she is adorable, I don't think anyone would mind saying goodbye for good to Migraine Jen. Let's hope for the best!
Jen!!! I am so happy for you❤❤❤❤❤ I have been watching you suffer for so long and have watched as so many physicians have let you down, that this feels like a victory not just for you but for all of us who watch you. You’re the reason I sought out the reason I was so sick when the first doctors said nothing was wrong. Thank you and congratulations!❤❤❤
You asked what we would do if in your position…I would have listened intently to someone like YOU as you are VERY informed. So my suggestion is listen to JEN! You are your best resource for information! So hopeful for you!❤️
I'm so sorry that it took so long and you had to go through all the disappointment to get here. But I'm sitting here with tears in my eyes bc I'm sooo so happy that you finally are taken serious and have a chance at getting better ❤️
Happy you finally get a doctor that is willing to dig deeper and do a blood patch. Those are hard to find. Can you share who and or where this dr is. It would be great to have a list of docs who dig further to help all who are struggling for so long.
Im so incredibly happy for you, i hope the blood patch works wonders and you dont have to go through as much pain. whoever contacted you and said you might just have something else is a saint!
Wow, Jen!🎉 Celebrating🎉 with you!! I'll be praying for the best possible outcome and that everything goes smoothly with flight, accommodations, kiddos, etc. You asked us what we would do and i would do the same thing based on what you said. Why not see if the least invasive/risky thing will work. You can always move in the other direction based on out come if need be. Excited to hear updates. 🤗💞
I'm so excited for you, Jen! I remember how awful the low pressure is. For me, it was worse than the high pressure. I really hope and pray that you get symptom improvement soon. I had my blood patch about a month before I got my shunt, and I actually feel human again, and I have for about a year now. I am hopeful that you will see at least as much improvement as I have. Im so glad you found this doctor.
So happy to hear you’re finally getting the treatment you’ve been beginning for! I’ve had a blood patch before but they knew exactly where my patch needed to be made because it was after giving birth, and it was when they did my epidural. But had my aunt not told me to get one, I would have been suffering the same as you from having a CSF leak. I’m so happy for you…I know the relief you are about to feel!
Wow, this must be such a huge relief for you. I wish you the best outcome from whatever treatments you end up having. You are so great how you navigate and deal with all of this. Take care. X
I’m so happy for you that you feel like you’re finally getting somewhere, I hope which ever option you choose works out well for you. Also Dragon tales was an amazing show!
That is amazing news im happy for you. I would say definitely pray about it. Which csf expert are you seeing? I’m still waiting my appointment is coming up soon. Sending love and prayers 🙏🤍
Incredible. Awesome explanation of how you're thinking about it, that's really helpful to see. "Equilibrate" 🧐 I wish you an ever more fruitful path in your health journey.
Yes, do the blind patch. My first 2 patches were blood and they gave me some gradual relief. I’ve had 2 fibrin glue patches and having my 5th one next week! Are you seeing Dr. S or Dr. C?
I'm so glad that you've ben persistent. I've been in your situation since a bad car accident in April of 1971. I still have migraines daily. Who is your doctor? I've been disappointed in some of your doctors since they could have helped you, but put a sure thing above a mom who is trying to parent in a lot ofpain.
At about 8:22, you said something like if they found something on myleogram then the treatment would be a patch if it was not a venous Vistula. If they found a leak, then the location is known and you would get a targeted blood patch instead of a non targeted. When the location is known you also have the availability of a fibrin patch. The cysts are “likely spots for a leak” but they don’t always leak.
Yes. Exactly. The hope with the non targeted patch is that I do not have a fistula, and the signs on my spinal MRI were in fact the leak that is causing problems. That is the best case scenario.
I just picture you feeling perfectly good with no more issues. Spend some time looking ahead to what that will be like. These issues have become such a significant part of your daily life so your life will change a lot if all that goes away. What will you do next? What kind of work do you want to do? What does non-migraine Jen do with her life every day? Imagine that. It will be amazing. Good luck!
Everything you’ve shared makes so much sense, and I think I’d be likely to try the blood patch first. Hoping the best for you and am so glad things are moving forward!!
I have had two blood patches. Just my two cents, I would go with the empirical blood parch first also. If you end up having to get a myelogram make sure they use a non cutting needles. Should be like 25 gauge atromatic (can’t spell, but basically they are Blount tipped)
I had my blood patch after my 2nd CT Mylogram (one year after my 1st). If you haven’t had all your stuff done yet, I’d recommend getting the CT Mylogram and follow it up with your blood patch after…. because a CSF Leak is a known possible side affect of CT Mylogram. I can tell you that the massive CSF Leak Headache was horrendous… but the Blood Patch after 3 days of the headache was even WORSE!!!! (( I should have gone back to the same hospital system where I had the CT Mylogram to get the blood patch, but made a different choice and regretted it!!!!)). It was sooo scary, non guided, wide awake, no pain control, and in a regular hospital room…. absolutely beyond scary & a lot of other very uncomfortableness and strangeness… He even yelled at me not to move - while he was guiding the wire (?) up my spine! Basically, I definitely do NOT recommend it the way I did it…. Trust me when I tell you that YOU want someone who does these things EVERY DAY, ALL DAY, & twice again on Sunday!!!! Don’t make my mistake! I really do hope the best for you and everyone else who needs to go through it in the future.💕
PS: my Blood Patch was ultimately successful! I don’t have the migraine issues you all have… I have other spine issues and that’s why I need to have periodic/annual CT Mylograms. I was just trying to explain my personal Blood Patch experience. I can’t believe I left that bit out! Good Luck & Better Health to all of you! 🍀🙏🥹
At 13:22. You mentioned a lumbar spine area. Did you have an epidural for your labor and delivery? You also mentioned a “double blind” patch. I have read that a blood patch spreads some amount of segments. So, you got a chance that a double blind patch will cover a problematic area.
I'm stoked that you are finally talking to doctors that have listened and offered you meaningful analysis and choices! Obviously the proposition of an actual solution is amazing news, but even if this current path doesn't reach an outcome that improves your life, I expect that you are connected now with people that will lead you to a solution. Living in that previously constant state of gaslighting by medical professionals is a Hell that nobody deserves, but is all too common in America.
I am usually team "see pictures" so from my perspective now I would probably go for the CTs. But on the other hand this decision might be different after years of symptoms.
Why such a big deal for a Blood Patch? I needed one after a Spinal Tap that didn't seal. I went to the ER and they did it in a hallway since it was so busy. So I'm confused why you are flying off and had to have this scheduled for far in advance. I must be missing something. Good luck with it. Low CF Pressure is a pain. I'm glad mine is resolved now.
When you have had a chronic leak, a CSF expert is needed. In my opinion even for a general non targeted blood patch. A CSF expert will be much more in tune on volume, what the patient can handle, and is up to date on the latest techniques. For example, making sure that blood spreads on both sides of the midline.
With all the issues you've had a good doctor is so important. It took me 20 years to finally get a doctor who determined I had Hydrocephlis. It didn't fit the norm so all the doctors told me I was just depressed. I must say dealing the them all did cause me to be depressed. I'm looking forward to hearing how this works out for you!
I'm so happy for you!! I thinkbgo for myelogram & locate the leaks, especially if there are possibly multiple leak sites. I was actually believed by a dr but no help yet. ❤❤❤
![Noob To Max With DRAGON REWORK In Blox Fruits [FULL MOVIE]](http://i.ytimg.com/vi/LnBMOinoOvA/mqdefault.jpg)
We are patching L1/L2 and L4/L5 and mid thoracic... so pretty extensive coverage 🤞🎉💜🙏
I'm so happy for you! Good Luck
I'm sending you so much love and support Xxx
if money was no object I would probably do the riskier option with potentially higher reward, but I have had a ton of surgery and many of them went to shit, so the less procedures for m the better. B can see how you would want to try the safer option first,and in this case I think it´s smart to try out every avenue .
Having a spinal tap is the most painful thing I have EVER experienced so I´m super ifffy about having neeldes in my back ever again thoug.
❤Can you please share who your dr is? Looking for a dr for similar symptoms.❤ very happy for you! God bless you!❤
I am so sure that you are finally feeling validated. It's great that you finally found a doctor who really listened to you. I myself suffered from migraines from the age of 20 to 67. I finally got to see a neurologist because my eye doctor believed I had suffered a stroke. The neurologist told me that the drug Relpax (which I took to help relieve me from some of the migraines but didn't really work very well told me that Felpax causes strokes and he wanted me off of it. I told him that the drug was the only one that gave me any relief. He put me on Botox shots n my scalp and I haven't had a migraine in 3 years. Life is so much better now since I don't have to spend hours in a dark room suffering. I have been watching your channel for a couple of years now because when I found you I felt a kindred connection. Keep at it girl, you are your own best supporter and your channel helps others find their own way to deal with their own migraines.
AWESOME!!! Good for you! I think what you say about who is looking at the test is important. My "unremarkable" CT scan is anything but. I don't ever talk about migraines on my channel, but I might need to start documenting. Wishing YOU all the BEST with this procedure!
This has been a helluva ride! I will continue lifting you in prayer! Oh my goodness, there is so many arrangements to be made and finalized! I am so happy this day has come!!! What a relief you must be feeling, plus a million other feelings as well! 🎉❤
Thanks a million! 🙏 Yeaaaaaaaahhhh how am I going to avoid lifting for 6 weeks?!! 😳😅
So so happy for you. I totally agree that docs who give you data like this, allowing you to make informed decisions are the best!
And even though she is adorable, I don't think anyone would mind saying goodbye for good to Migraine Jen. Let's hope for the best!
Jen!!! I am so happy for you❤❤❤❤❤ I have been watching you suffer for so long and have watched as so many physicians have let you down, that this feels like a victory not just for you but for all of us who watch you. You’re the reason I sought out the reason I was so sick when the first doctors said nothing was wrong. Thank you and congratulations!❤❤❤
Well aren't you just too much 🥰💜💜💜 thanks friend. I appreciate you cheering me on. I don't know what I'd do without you.
@@MommingwithMigraine Same here!❤️
You asked what we would do if in your position…I would have listened intently to someone like YOU as you are VERY informed. So my suggestion is listen to JEN! You are your best resource for information! So hopeful for you!❤️
I'm so sorry that it took so long and you had to go through all the disappointment to get here. But I'm sitting here with tears in my eyes bc I'm sooo so happy that you finally are taken serious and have a chance at getting better ❤️
Happy you finally get a doctor that is willing to dig deeper and do a blood patch. Those are hard to find. Can you share who and or where this dr is. It would be great to have a list of docs who dig further to help all who are struggling for so long.
So happy for you Jen! What a ride, I hope you find relief soon!
Im so incredibly happy for you, i hope the blood patch works wonders and you dont have to go through as much pain. whoever contacted you and said you might just have something else is a saint!
YEA thank you so much. I hope it goes well!
Wow, Jen!🎉 Celebrating🎉 with you!! I'll be praying for the best possible outcome and that everything goes smoothly with flight, accommodations, kiddos, etc. You asked us what we would do and i would do the same thing based on what you said. Why not see if the least invasive/risky thing will work. You can always move in the other direction based on out come if need be. Excited to hear updates. 🤗💞
My thoughts exactly. Can always go to the myelogram! Hope the patch works 🤞💜
Best of luck with the procedure Jen, so glad you finally found a doctor that will listen to you knows what he’s doing and works well together
I'm so excited for you, Jen! I remember how awful the low pressure is. For me, it was worse than the high pressure. I really hope and pray that you get symptom improvement soon. I had my blood patch about a month before I got my shunt, and I actually feel human again, and I have for about a year now. I am hopeful that you will see at least as much improvement as I have. Im so glad you found this doctor.
I’m so happy for you!!! I was smiling the whole time I was watching your video!!! 🎉
It's a PARTY!
So happy to hear you’re finally getting the treatment you’ve been beginning for! I’ve had a blood patch before but they knew exactly where my patch needed to be made because it was after giving birth, and it was when they did my epidural. But had my aunt not told me to get one, I would have been suffering the same as you from having a CSF leak. I’m so happy for you…I know the relief you are about to feel!
Wow, this must be such a huge relief for you. I wish you the best outcome from whatever treatments you end up having. You are so great how you navigate and deal with all of this. Take care. X
Oh yes!! Thanks so much for being here with me 💜
Amazing news!!!! I’m so excited and happy for you! 🎊 🎉😊
Thank you!! I'm tentatively excited but mostly just happy we are on the right track
I’m so happy for you that you feel like you’re finally getting somewhere, I hope which ever option you choose works out well for you. Also Dragon tales was an amazing show!
That is amazing news im happy for you. I would say definitely pray about it.
Which csf expert are you seeing? I’m still waiting my appointment is coming up soon. Sending love and prayers 🙏🤍
So freaking happy for you Jen, hope the patch helps as much as possible :)
Not able to watch the video right now, but couldn’t wait to say YAY! Wishing you the best ❤
Awww thank you!! Hope it goes well!
Congratulations and heal well.
Incredible. Awesome explanation of how you're thinking about it, that's really helpful to see. "Equilibrate" 🧐
I wish you an ever more fruitful path in your health journey.
Heeeyyyyy my buddy 🥰
Yes, do the blind patch. My first 2 patches were blood and they gave me some gradual relief. I’ve had 2 fibrin glue patches and having my 5th one next week! Are you seeing Dr. S or Dr. C?
I'm so glad that you've ben persistent.
I've been in your situation since a bad car accident in April of 1971. I still have migraines daily.
Who is your doctor? I've been disappointed in some of your doctors since they could have helped you, but put a sure thing above a mom who is trying to parent in a lot ofpain.
So I am confused now - what would happen to your increased intracranial pressure after the patch, be it targeted or non-targeted?
At about 8:22, you said something like if they found something on myleogram then the treatment would be a patch if it was not a venous Vistula.
If they found a leak, then the location is known and you would get a targeted blood patch instead of a non targeted. When the location is known you also have the availability of a fibrin patch.
The cysts are “likely spots for a leak” but they don’t always leak.
Yes. Exactly. The hope with the non targeted patch is that I do not have a fistula, and the signs on my spinal MRI were in fact the leak that is causing problems. That is the best case scenario.
The best news to wake up from my nap with lmao!
wakey wakey, goooooood morning rory! haha! like *REALLY GOOD* morning! hahahah!
Hooray! A plan, a treatment, moving forward to relief!
Woohoooooo!!!!
This is great news!
YES!
Make sure you know post patch protocol!
I just picture you feeling perfectly good with no more issues. Spend some time looking ahead to what that will be like. These issues have become such a significant part of your daily life so your life will change a lot if all that goes away. What will you do next? What kind of work do you want to do? What does non-migraine Jen do with her life every day? Imagine that. It will be amazing. Good luck!
Soooooo encouraging as a visual. Thank you 💜
Everything you’ve shared makes so much sense, and I think I’d be likely to try the blood patch first. Hoping the best for you and am so glad things are moving forward!!
Eeeeekkkk thank you so so much!!!! 💓 phew. It's a big choice but this does feel like an easy step 1
I have had two blood patches.
Just my two cents, I would go with the empirical blood parch first also.
If you end up having to get a myelogram make sure they use a non cutting needles. Should be like 25 gauge atromatic (can’t spell, but basically they are Blount tipped)
THANK YOU. 💜 seriously
❤Can you please share who your dr is? Looking for a dr for similar symptoms.❤ very happy for you! God bless you!❤
I’ve had both and I have to say the targeted approach was better, which was after having the milogram.
I had my blood patch after my 2nd CT Mylogram (one year after my 1st). If you haven’t had all your stuff done yet, I’d recommend getting the CT Mylogram and follow it up with your blood patch after…. because a CSF Leak is a known possible side affect of CT Mylogram. I can tell you that the massive CSF Leak Headache was horrendous… but the Blood Patch after 3 days of the headache was even WORSE!!!! (( I should have gone back to the same hospital system where I had the CT Mylogram to get the blood patch, but made a different choice and regretted it!!!!)). It was sooo scary, non guided, wide awake, no pain control, and in a regular hospital room…. absolutely beyond scary & a lot of other very uncomfortableness and strangeness… He even yelled at me not to move - while he was guiding the wire (?) up my spine! Basically, I definitely do NOT recommend it the way I did it….
Trust me when I tell you that YOU want someone who does these things EVERY DAY, ALL DAY, & twice again on Sunday!!!!
Don’t make my mistake!
I really do hope the best for you and everyone else who needs to go through it in the future.💕
PS: my Blood Patch was ultimately successful! I don’t have the migraine issues you all have… I have other spine issues and that’s why I need to have periodic/annual CT Mylograms. I was just trying to explain my personal Blood Patch experience.
I can’t believe I left that bit out!
Good Luck & Better Health to all of you! 🍀🙏🥹
Can I ask what your symptoms are of the leak? X
At 13:22. You mentioned a lumbar spine area. Did you have an epidural for your labor and delivery?
You also mentioned a “double blind” patch. I have read that a blood patch spreads some amount of segments. So, you got a chance that a double blind patch will cover a problematic area.
I've never had an epidural. Both babies were natural. We are patching L1/L2 and L4/L5 and mid thoracic... so pretty extensive coverage 🤞
What is the blood patch???
Choose the one that helps!!!! Love thoughts your way!!!
Jen, I was in your position 1 year ago.
I'm stoked that you are finally talking to doctors that have listened and offered you meaningful analysis and choices! Obviously the proposition of an actual solution is amazing news, but even if this current path doesn't reach an outcome that improves your life, I expect that you are connected now with people that will lead you to a solution. Living in that previously constant state of gaslighting by medical professionals is a Hell that nobody deserves, but is all too common in America.
I am usually team "see pictures" so from my perspective now I would probably go for the CTs.
But on the other hand this decision might be different after years of symptoms.
I’m guessing a blood patch is kinda the same risks as an lumber puncher.
I look at my tests and all the radiation I receive to be one step closer to being a superhero, yes please.
What is a blood patch?
Using your own blood cells to plug the leak and encouraging that hole to close itself.
I would send these results to every doctor that told you it was anxiety!
Why such a big deal for a Blood Patch? I needed one after a Spinal Tap that didn't seal. I went to the ER and they did it in a hallway since it was so busy. So I'm confused why you are flying off and had to have this scheduled for far in advance. I must be missing something. Good luck with it. Low CF Pressure is a pain. I'm glad mine is resolved now.
When you have had a chronic leak, a CSF expert is needed. In my opinion even for a general non targeted blood patch.
A CSF expert will be much more in tune on volume, what the patient can handle, and is up to date on the latest techniques.
For example, making sure that blood spreads on both sides of the midline.
Heading to the expert. Worth the hassle for a big name in the field 💜
With all the issues you've had a good doctor is so important. It took me 20 years to finally get a doctor who determined I had Hydrocephlis. It didn't fit the norm so all the doctors told me I was just depressed. I must say dealing the them all did cause me to be depressed. I'm looking forward to hearing how this works out for you!
I'm so happy for you!! I thinkbgo for myelogram & locate the leaks, especially if there are possibly multiple leak sites.
I was actually believed by a dr but no help yet. ❤❤❤