This video has been sitting on "unlisted" for a while so I thought it might make a nice surprise Tuesday upload. SURPRISE! Hi!! This was my thoughts 2 days AFTER I got that "it's a go" email (from the reaction video: kzread.info/dash/bejne/aquH15Shg9XFYqg.html). That video was first moments, this one was 2 days later. And WHAT HAPPENED at the May 15, 2023 appointment?! My Procedure Plan: kzread.info/dash/bejne/i2l6taZpaKWsd6w.html - Wish me luck, thank you for being here, friends.

@YRTheyDoingThis

Жыл бұрын

Wishing you so much luck!

@EpsilonAD

Жыл бұрын

🤞🐾

@grassfolk

Жыл бұрын

Oh that makes so much more sense. The video order really confused me 😂

@MommingwithMigraine

Жыл бұрын

@@grassfolk sorry 😅 this one wasn't ever gonna see the light of day, but then there was a schedule opening 😉

Personally I want you to be scientist Jen again. Your channel can be "Today's biochemistry news with Jen" and you can be a science communicator like Carl Sagan or Neil Tyson. Only way better looking.

7:55 Nearly 33 thousand people is "not that many people? It's 32900 more than I can talk to.

I’m glad you are feeling more hopeful! I will be praying lots.

Babe, this is PTSD from medical experiences...just waiting for hope, feeling hopeful for a short time and then your hope being dashed.

@MommingwithMigraine

Жыл бұрын

Wouldnt call it PTSD; just processing normal ups and downs of life - we all go through hardships 💜

@sabeenshahjehan8522

Жыл бұрын

I was told the same thing that I have PTSD from my chronic pain & medical experiences!

It's funny, you talking about having hope. I always had difficulties making people understand why I struggled with accepting my illness. Not because I can't accept being ill but because to me, fully accepting it as a fact kinda includes giving up hope of ever curing it or even fighting it. And to get that balance right, of not losing hope but also not denying your physical reality its due, is the hardest thing. And I wholeheartedly agree that it's important to never lose hope and just accept it as fate.

@christinabellamoore

Жыл бұрын

I hear you, I too had a hard time with acceptance, but now I have accepted my chronic illness, and I still have lots of hope, so I can reassure you tht you can definitely have both acceptance and hope, sending love to you xx

Hope is for everyone Jen❤️ im glad you have this opportunity for whatever "it" is!!! Iv suffered with brain fog and fatigue for years. Im hesitant to bring up again with my Dr as were still trying to get my thyroid disease under control(and i Hope to feel better!). I understand about invisible illnesses, ones only you and your dr and family know. High functioning when you have to be, then falling into a puddle of exhaustion when you get home..having to skip events or leave early. i wish you every bit of hope!!!!❤❤

@MommingwithMigraine

Жыл бұрын

Thanks so much!! I hope we both see huge turnarounds in 2023!

I think regardless of which procedure the doctor said was a go...it's all good. I (like you) am one of those top 2 % that get all the rarest side effects from most things so I get it. Either way I'm so happy and excited for you finally getting heard and getting the response and treatment needed.

@MommingwithMigraine

Жыл бұрын

Thank you! I do not thrive in the unknown but I sure had hope in it. Thanks for the kind words!

I recommend that if you have this uncertainty, write to the doctor and clarify the doubt because whatever the answer is, it will be good and will keep you calmer in the long term. I understand the uncertainty that you are going through right now because I have a similar one. To some degree I miss my 100% professional self as a Physics and Medical Physics because since I started with IIH symptoms I feel that I am not the same and that I have lost a lot of my knowledge. I want to feel 100% myself again or as much as I can without feeling frustrated by not remembering something, feeling loss of vision or not being able to do my job as a Medical Physics Extender 100% alone because of feeling sick. Even though I work in health, it is difficult for those around me to understand what is happening to me without thinking that it is an excuse and that I am really sick. The best advice that I give you from experience is to live one day at a time and if you have a doubt about something, ask your doctor without fear because in the long run not asking can cause you to have a "crisis" by overanalyzing.

@MommingwithMigraine

Жыл бұрын

Aww thanks for your understanding and concern. This video was filmed after I had confirmation that we were moving forward, but BEFORE my follow-up to talk about the options. I was in the just guessing/waiting time, and that's the only reason I didn't reach back out!

This helped me so much 😢!

@MommingwithMigraine

Жыл бұрын

I'm so glad my story is helping you! I saw your other comment. I am so sorry you're not being listened to.

I’m here at 3am searching for answers and I think God wanted me to see all your videos 😢

@MommingwithMigraine

Жыл бұрын

Omg. He has a way of doing that 🙏💜

To me, “it’s a go” probably meant like “we’re taking your case and it’s worth looking into” You have a good chance of getting some improvement.

@MommingwithMigraine

Жыл бұрын

Yep! They ended up giving me the choice after all. The update video is posted.

Looking in from over here in the uk. I think your IIH wasn’t controlled and that’s caused you to leek. I hope they help you and I’m glad you have hope. I’m in limbo with my IIH as my shunt was fitted in 2012 and is hurting. They tried me on that migraine drugs for 3 months and did nothing. They won’t change the shunt until my eye sight start going. I hate these headaches

@MommingwithMigraine

Жыл бұрын

I agree. Now that the IIH is under control we're ready to address the leak!! I'm so sorry for the issues with your shunt. This is all so confusing.

@Lucinda5ara

Жыл бұрын

@@MommingwithMigraine I just worry that your IIH is only ok because your leaking. Keep us posted Because so many of us care and learn from you xx

@MommingwithMigraine

Жыл бұрын

@@Lucinda5ara appreciate it 💜

@christinabellamoore

Жыл бұрын

goodness that's awful that they won't change your shunt without vision loss! sending love to you xx

I have a great support system and a awesome service dog but Hope is great to have ❤ I would do anything to be the man I was before POTS & MS

I’ve had lumbar punctures due to IIH diagnosis and then had a blood patch after one of these jabs touched the Dour-a!

@MommingwithMigraine

Жыл бұрын

How was the patch I'm afraid to ask

@zs2001

10 ай бұрын

Lumbar punctures always pierce the dura, what are you talking about?

❤

You have a good chance of just the empirical patch helping. My leak is from an LP. A myelogram is signing up for a LP. Now, a CSF specialist will probably use the correct needle size, etc. They may also patch you there shortly after.

@MommingwithMigraine

Жыл бұрын

The myelogram would be 2 myelograms on 2 consecutive days, followed by a blood patch for the myelogram holes on the 3rd day, and LATER addressing the chronic leak if it was found. The non-targeted blood patch will essentially be me signing up for day 3 only =P We are patching 3 locations.

Not only can doctors say that a mri or CT or whatever scan they did is normal when it's not, they can also say that something is wrong when it's not. I have expeinced it and I got diagnosed with something I didn't have becuase of it. They put me on meds and I lost months of my life to sezuires becuase I was on something I shouldn't of ben on. Doctors are not perfect in fact in my exprince they are so often guessing. Or at the very least aren't 100% shure of what they are saying, not even 90 or 80. Always get second opinions.

If you are so unsure about what someone wrote in an e-mail, why not just ask for clarification from that person?

Maybe I just misunderstood something, but this video seems like it would’ve come into place before your prior video. Did you film them out of chronological order or am I just confused.

@MommingwithMigraine

Жыл бұрын

Out of order - explained that in the description and the pinned comment 💜

@asecretcourtofcrowsandcloc4084

Жыл бұрын

@@MommingwithMigraine right. I’ve saw that after, thanks.

No matter which route you choose, there’s no wrong answer. Only in hindsight will you be able to tell.

@MommingwithMigraine

Жыл бұрын

Agreed. So for now we'll skip the one without takebacks =P

I had a pretty serious leak and it was only found on a DSM. If you ever need something further Dr Scheivink in LA is a lifesaver!

Have you been assessed for a vestibular disorder??

@MommingwithMigraine

Жыл бұрын

no, not formally looking for a diagnosis of anything but I did do many months of vestibular therapy

Can you get back and say "what's a go please?" as that isn't very informative of that doctor! (Edit; ok I just read the description and the pinned post, I've got it now, sorry, I got confused, it doesn't take much to confuse me anyway!) Can I ask, what was the test that made the doctors say that you do have a CFS leak please? was it a normal MRI or an MRI with contrast please? Sending lots of love, strength and hope to you as always Xxx

@MommingwithMigraine

Жыл бұрын

Hehe roller coaster. I can relate! 💜 It was fat supposed MRI's. I posted about the brain findings 💜

@christinabellamoore

Жыл бұрын

@@MommingwithMigraine ok thank you very much for letting me know, I will have a look through your videos to catch up on it all. I'm on the same roller-coaster as you right now! Xxx

4:00 Rename your channel to Momming without Migraine.

@erikavaleries

Жыл бұрын

😂😂😂😂

@erikavaleries

Жыл бұрын

I love it!! #goals

I thought you leak was in your right nostril? That bad, but at least it's not coming from the wrong nostril. Imagine if your leak was coming out of my nostril. That would be really awkward. We don't even know each other.

@MommingwithMigraine

Жыл бұрын

ERICCCCCCC 🤣🤣🤣🤣🤣🤣🤣🤣

@erictaylor5462

Жыл бұрын

@@MommingwithMigraine I like to make you smile, even if just a little.

Too much dog talk. Lets get to the point.

@MommingwithMigraine

9 ай бұрын

No such thing. Go find a different channel 😁