My CT Myelograms were FAR from 'NORMAL' // Another Fibrin Blood Patch NEXT WEEK!

[@MommingwithMigraine]

GOOD NEWS 🎉 There's a time delay for video editing... these patches are already DONE. I'm home, and my recovery details are in my latest post on IG: instagram.com/mommingwithmigraine

[@luvfunstuff2]

Yay! So glad your "extreme accupuncture" has worked for you!

[@natalieedelstein]

Yay!! Oh, I'm so happy for you! Yay on all 4 patches, lungs remaining intact, and working legs! I hope you're healing well even though the route of entry wasn't so easy and that your symptoms were not coming through that 5th unsafe spot 🙏

[@MommingwithMigraine]

@@luvfunstuff2 😂 thanks friend

[@MommingwithMigraine]

@@natalieedelstein Appreciate it Natalie!! Thank you!

[@jimhull4885]

Please be careful flying home. From a fellow person with csf pressure problems who has been through this I tried to fly too soon and blew the patch. I didn’t know that the cabin is only pressurized up to 4000 feet and above that normal people can regulate the change for the rest of the 32000 feet. When I fly my body can’t compensate and my pressures go through the roof and that can blow the patch. Good luck 👍

[@rachelchandler1949]

I know you posted this ages ago but I want to thank you. I have had terrible high pressure and low pressure issues during and for a few days after flights for years both pre and post my blood patches (now semi failed) for chronic csf leaks. I now suspect this info will help me better understand why my pressures get sooo bad traveling. Down the research hole i will go! (Any recommendations on links I would welcome!)

[@LaCafedora]

This is so exciting! Stuff is happening! Doctors are listening to you, and taking action, and offering Sooner appointments instead of Later appointments, and family and friends are hustling to get you traveling! Having a plan that is actually being implemented is so gratifying.

[@MommingwithMigraine]

It's so nice after years of not being taken seriously!

[@tellem372]

For those in Australia: For interstate travel you can always have a traveller with you all the way to the gate (just remember that your carry bag has to go meet security measures like every one). You can also ask the airline for a wheelchair to utilise if needed to get from check in to the gate. And finally, if travelling alone or with a child, go up to the counter at the gate before the officially open and let them know you have special circumstances and they will allow you to board first which gives you more time and they will also watch out for you on the flight which is helpful especially if travelling alone!! And yep I’ve had to do all this multiple times for multiple reasons and it’s never been an issue (well except when I was so very sick and couldn’t hide it, but now I know I was also in severe anaphylaxis so you know 🤷‍♀️…. Even then they just told me they’ll put me on the very next flight to give my body time to calm down.) Also! If in Australia you HAVE to travel interstate or more then 100kms for medical care, if you get a get a letter from your doctor, keep your receipts, so flights, taxi’s, any accomodation if you’re not being admitted and even if you NEED a companion with you, then there is a form you can get (each state is different but they all have them) and claim these expenses back. It takes about three months, but money back is a good thing! Every country will have different rules but these are some for Australia and I hope it helps!

[@MommingwithMigraine]

Thanks for sharing this! I'm sure it'll help someone who stops through!

[@SnowySpiritRuby]

For U.S. travel, if you need someone to do it, he/she can also get a gate pass to meet you at the gate when you land as well, not just to go through with you when you fly out - my parents did it on Saturday.

[@hollyamici2460]

Oh my gosh! That’s so amazing! So glad your doctor found something to go on! It must be a relief to finally have someone working with you to get you healed! I wish the best for you! I’m still waiting to get some answers for myself. Appointments coming in October! I’m really hoping for relief soon.

[@cindyrasmussen1399]

I am not just excited for you but ecstatic! This is fantastic! I hope this ends your horrific pain and suffering. You are a trooper.

[@SnowySpiritRuby]

Praying that recovery is going well.

[@MommingwithMigraine]

It is!!!!!!

[@annereel960]

I’m so glad you were brave and got the myelograms! As you know, I knew you needed them at the first video I saw bc our symptoms were so similar. I am glad you are getting the fibrin as that worked for me too, as you know. ❤❤❤❤yay progress for less PAIN!

[@MommingwithMigraine]

Takes a leaker to know a leaker 🤔 fibrin is easier! a year and a half you've been patched right? Yay!!!

[@janetterocha3609]

I’m praying you find the answer you are looking for. Safe travels.

[@MommingwithMigraine]

Appreciate it so much. Let's lessen these symptoms!

[@li-la-lomeyutar8825]

Good luck! Hope baby A will help you through the flight. And may the hard work you put into this, pay off at last. May you live your life easier.

[@MommingwithMigraine]

What a dream that would be. I appreciate it!

[@gibletjakester]

Can't wait to hear the results! I'm going through the same thing with the team at Mayo in Jacksonville FL. Just got results from an MRI showing spots of interest that I hope will push them to do the myelogram

[@erikavaleries]

My ❤ is with you. My next step is ct myelogram bc my cisternogram was an epic fail!! It was horribly painful with pledgets. God help us all get this behind us soon. Sending love and strength to you Jen.

[@MommingwithMigraine]

Sending strength and spoons right back to you. The myelograms are crummy but so fast! You can do it! Pledgets don't seem fun, I've never had them... a little surprising considering my dripping isn't it?! God will help us through 💜 He never promised to help us avoid troubles but He did promise to be there with us for every step!

[@erikavaleries]

@@MommingwithMigraine That helps so much to hear. I will keep my faith. I’m so grateful for your channel for bringing some light to this heavy subject. You are a guiding light! ❤️❤️🙏🙏

[@MommingwithMigraine]

@@erikavaleries faith is the only thing that TRULY matters this side of heaven 💜🙏 you can do this, I'm cheering you on! Please keep me posted

[@AshTheRose]

Good luck! I'm so excited for you!!

[@hannahland7863]

Jen I am routing for you so hard! I know that struggle when you literally drop everything to try to access a treatment provider who has limited availability. I also know the elation of FINALLY getting abnormal test results and being able to point at the thing that has been making you feel bad so long. I know it’s a long and complicated road and tomorrow might now be the ultimate solution, but I am sending you my best possible wishes that the procedure brings you as much relief as possible. You’ve got this!

[@Lynore_Marie]

Jen - Sending you so much love,❤ gentle hugs,🤗 and saying prayers for a smooth procedure, the best of outcomes, and a speedy recovery.

[@MommingwithMigraine]

Thank you so much! It all went well, I'm recovering well. 💜

[@sarahkwast1250]

Praise God for answers! Now you can move forward with purpose. I pray you have a safe and stress free trip, and that the procedure goes perfectly. You got this! ❤😊

[@MommingwithMigraine]

Thanks so much! This is such a promising way forward!

[@cadeheinberg3047]

We love answers. So happy for you

[@MommingwithMigraine]

Yes we dooooo! Thank you!

[@ArreisMorsCI]

LOVE the punch card prank!!!!

[@tracyanderson8663]

I am a chronic kidney stone passer. One of the things you can do when you feel like it is to ask for a 24 hour urinalysis to see what type of stone you are making. Which can help you decide what to do about the stones. Drinking lots of fluids and lemonade/ lemon juice in water can help flush the crystals formed before they cause issues. I make my own lemonade with Splenda to keep my sugar intake low. I just use bottled lemon juice. Also the stones may be from when you were pregnant and may be a non issue as long as they are small enough to pass on their own.

[@Jen-zz7nv]

My son passed many kidney stones as a child. My heart goes out to you.

[@tracyanderson8663]

most of the time they are not a big issue. I am to the point where I know I am going to pass one but they don't bother me much. My first one was too big to pass on its own. So I had to have lipotripsy. @@Jen-zz7nv

[@MommingwithMigraine]

That's so good to know- thank you!!!

[@AnnikaOakinnA]

I'm so happy and excited for you. I'm so grateful that you're on the path to answers and solutions, and so so so grateful that you have so many amazing supports around you.

[@MommingwithMigraine]

I appreciate that! This is a great set of steps forward. Thank you for being one of my supports 💜

[@izzykaii]

Congrats on the progress !! And good luck on the next appointment 💕 love your channel so much

[@MommingwithMigraine]

Thank you!! 💜

[@Jen-zz7nv]

Praying for you ,Jen! It sounds like you found such an amazing Dr. Its rare to find one who will actually sit down with you, say hey, lets go through your tests and ill show you whats going on and what we're going to do to fix it. In my experience its those providers that will actually be able to help. Or to lead you to someone who can. Its so encouraging to witness you finding those people after such a long road of disappointment and frustration. Hopefully soon youll be able to start a whole new life!

[@MommingwithMigraine]

Thank you! 💜 🥺

[@kristensaenz6421]

Excited for your recovery!

[@katelynnwalker2568]

Best wishes!💞

[@natalieedelstein]

Oh my goodness, Jen! This is great news that they think there's something there to fix and they can get it taken care of so quickly!! I really hope this is the end of the road for you for a while/forever with this condition! And hey! Now your immune system got an extra boost, so hopefully this will be a healthy recovery with no added cold-symptom pressure! Sending my healing vibes! You've got this!😁🦋💜💟❤‍🩹🦋

[@MommingwithMigraine]

No more colds! I'm on board with that! 😂 Thanks for being a good friend, Natalie.

[@natalieedelstein]

Ditto 😊😊😊

[@Doggiemum]

Candle on! Best luck. Thinking about you!❤

[@MommingwithMigraine]

You're the best! Thank you!! 💜 🔥

[@rickclapp6560]

Who is your doctor? Mine just retired and I need another that has a clue. Good Luck with your procedure. Good thoughts and Prayers! Rick

[@lydiakies9053]

Ehlers Danlos Syndrome has the Zebra. CSF Leakers need an animal too. Hedgehog? Porcupine? Super awesome pineapple with sunglasses?? All jokes aside, I'm glad you're okay, and that you've found an amazing medical team.

[@carolineocallaghan6402]

I’ve commented before. I just found out that I have a pineal cyst! Mine is e-faxing the CSF aqueduct, but I wasn’t wrong about my problem stemming from a CSF issue. Again, thank you for the education. Some of your knowledge could’ve saved my brain, for sure.

[@binglemarie42]

I'm thinking of you and wishing you a smooth procedure!! Also, thank you for bringing up the gate pass. I'll have to check that out.

[@MommingwithMigraine]

You're welcome, make sure you look into the rules for your airport/airline before you go. I didn't end up using it after all, but it's a neat thing that's available!

[@amneris9433]

So proud! You and all of your family are such a good team 💪🏼☺️

[@MommingwithMigraine]

Aww thank you. They're everything to me 💜💜💜

[@lourdesayala3959]

You’re going to do great!!😊

[@MommingwithMigraine]

I did! 💜 update coming soon.... but I'm done and recovering well!

[@TheRockInnRobin]

Hydrangea and d-mannose for the kidney stones 😉 works like a charm for me anyway

[@MommingwithMigraine]

OOH THANK YOU! How do you take the hydrangea??!! Not me about to go snort 'em straight from my garden 🤣

[@oceanicwilderness]

But, how do you get a specialist to look at the MRIs? Because I would love one to look at my "normal" MRI.

[@MommingwithMigraine]

Hop hop hop specialists 🐇 If they send you to psych tell them no thanks and try someone else.

[@Serenity7250]

Thats great news! So are these patches inside the fistulas? I have no idea how it works but im guessing just putting glue on top of rogue veins doesnt stop it siphoning off csf, or does it?. I think ive heard of them also using clips to clip off the connection. Thats amazing that youre getting treatment so quick! Im still on the wait list for surgery but so glad its progressing 'step by step' just like you said. I'll be thinking of you🙏🏻

[@MommingwithMigraine]

I had the same question!! You're right it's not patching the same way it works for a tear. The glue might be applying pressure or might be getting into the vein. The needle entry was different for this fistula patch - I'll post about that soon. My extremely limited understanding is that patching proves the concept and a surgery or embolization is the long term repairfor a CVF.

[@MommingwithMigraine]

Thank you for the kind words and well wishes. I will be thinking about you as well as you continue on this journey. we have got this!

[@klynch7912]

May I ask where you go? I am in Maine and no one here so need to go somewhere.

[@SnowySpiritRuby]

Jen told me there's one in the Denver area - no idea whether that's where she went or not (last she mentioned it, she still wasn't sure whether she was going to be comfortable with eventually sharing her doc's name or not), but she told me about that one.

[@lourdesayala3959]

Have you heard of the ct photon machine that is supposed to be better for locating csf vf’s?

[@MommingwithMigraine]

Yes I skimmed a paper about it, I believe it was one from THIS YEAR 🤯 We are on the cutting edge!

[@sarahsmith7309]

Best of luck ❤

[@MommingwithMigraine]

Thank you!! 💜

[@51monw]

Good luck

[@MommingwithMigraine]

Thank you! All went well!

[@charliee769]

Excited ❤

[@MommingwithMigraine]

Beyond belief! 🎉

[@TamilachiinGermany]

I will pray for you nothing will happen my dear

[@MommingwithMigraine]

All will work out for good! 💜🎉

[@isiler2034]

Hello Jen, have you ever watched the Dr. Ross Hauser's videos or heard about him? He is the most knowledgable doctor on the earth ı guess.And he treats the hEDS patients like you.POTS, CSF leak,migranes,intracranial hyper tension etc. These are all related to neck instability and treated by prolotheraphy.Maybe he can be a solution for you.

[@meganvalek2690]

LOL extreme acupuncture! 😂

[@MommingwithMigraine]

Prove me wrong 😂😂😂

[@cindyrasmussen1399]

❤😊❤😊❤😊❤😊❤

[@savednorwegian]

Hope you're getting better :) but why did you show those brains scan pics so briefly? Only for a specialist those may be of use, for 99%+ its just weird

[@MommingwithMigraine]

They're just random b roll 🤷🏼‍♀️ not my scans. Sorry for the confusion!