RECOVERY PART 2 // The Symptoms that my First Blood Patch FAILED

Detailing the second two weeks of non-targeted blood patch recovery. In part 1 (weeks 0-2), I talked about my successful non-targeted blood patch for a spontaneous CSF leak. In the 2 weeks after that video, the blind blood patch unfortunately wore off and I started to have symptoms of low cranial pressure again. My blood patch wore off, but we still learned a lot from it!

HEAR ALL ABOUT IT:

This three-location epidural blood patch procedure was my first spinal CSF leak treatment in a long and complicated medical diagnosis story. I got this blood patch while breastfeeding, with 2 babies 2 and under, so I briefly touched on the challenges and triumphs related to an outpatient surgery while breastfeeding.

MORE RELATED VIDEOS:

For those of you wondering what a blood patch recovery is really like, and what a blood patch recovery feels like, this video is for you. So, what is a blood patch like? My blood patch procedure experience was a very typical epidural blood patch procedure, and I recovered well from my epidural blood patch, so this story should help you understand what to expect. I hope you enjoy learning about how to fix a brain fluid leak.

Fortunately, feeling better after my epidural patch could be considered partially diagnostic because it confirms CSF leak diagnosis! Finding out that my brain was leaking fluid has been helpful to mitigate symptoms, but the ideal solution would be to have a blood patch procedure. This is one of the most common solutions for how to fix a brain leak.

If you HAVE POTS and SUSPECT A LEAK, watch this:

○ Daily Life: INSTAGRAM.com/mommingwithmigraine

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SOME PREVIOUS VIDEOS…

Other Spinal CSF Leak Diagnosis Roller Coaster videos (2022):

*IMPORTANT* POTS and Leaks *KNOW THE DIFFERENCES*

COMORBIDITY THINGS:

High Cranial Pressure (IIH) (2021):

Content ID Code: 3QPYDXNIXYULITIF
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NOTE: Though I talk about medical topics, nothing on my channel is meant as medical advice (for all statements, past or future). I am a patient sharing my personal experiences, but I am not a doctor nor am I medically trained. My channel is for entertainment and community only.
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DISCLAIMER: Links included in this description might be affiliate links. If you purchase a product or service with the links that I provide I may receive a small commission. There is no additional charge to you! Thank you for supporting Momming with Migraine so I can continue to provide you with free content each week!

[meganvalek]

Hey, film laying down if that's what you need to do. We still love you! 😊

[erikavaleries]

What a rollercoaster. Great news about the myelogram! I just got offered a cisternogram! I’m over the moon! I didn’t give up following your example. I know we will both get more answers!

[fernshepherd]

Once again, so many symptoms you're describing are things I experience.... Like "that sounds familiar", "that sounds familiar", Little things that doctors usually completely dismiss because each individual one is "little". Scalp pain! Face drooping! Getting dumb when I'm upright! Falling asleep all the time! I never really stopped thinking I had a CSF leak but this makes me think it's time to bring it back up to my doctor...
I'm sorry it didn't work long term for you! I hope your future stuff goes better <3

[sarahkwast]

I am sorry the patch failed. 😢
I know how hard it is emotionally to get a taste of a better normal, then end up back where you were for so long. I had a similar situation when I first started Mounjaro for my diabetes.
At the third week I was able to walk 2.5 miles, eat a meal with meat, then immediately walk another 2.5 miles without being winded or POTSy at all! Then my body adjusted to that dose and, by the 9th week, I was back to my old normal. It was devastating! I didn't understand why I wasn't able to maintain that energy level anymore. But I had to keep reminding myself that, even if my current normal isn't as good as that short glimpse, I still need to celebrate the little things I CAN do right now. And with the higher dose of Mounjaro I am on now I have seen steady improvements. I am still not where I was on the third week, but I am better than I was 3 weeks ago and that is worth celebrating!
Keep celebrating the little victories and work towards long term improvement as it happens. You are the best Jen exactly where you are right now, and I admire you for sharing these ups and downs they come. ❤️❤️

[theseventh]

Its best to avoid anti inflammatories post patch as you need the inflammation to heal the defect. Its so hard realising a patch hasnt held. Hopefully you wont have to wait long for more treatment. Sending hugs.

[aawillma]

This is like a Flowers for Algernon thing. That patch was so valuable diagnostically, but damn if it wasn't a cruel glimpse of your full potential. I hope your docs can use this experience to find a treatment path that stops your leak or eases your suffering permanently. I've gone through this "temporary reprieve" thing with my chronic issues and man it is such a bittersweet bitch of a thing. Best of luck Momma J!

[danielallanillos]

in my mind you have like a million subs. i hope you find something that can give you a better quality of life, i'll be here to support from the other side of the world <3

[kindululu]

Wishing you all the best. I will watch your videos even if you lay down. Be as comfy as you can be, we're here for you wishing you well.

[katiechurch]

Sorry this one failed. Good luck on your next appointment! Nerve pain is absolutely the worst. For me nothing helped and unfortunately they didn’t figure out what was causing it until it was too late. Now I have permanent spinal bruising and it can flare up and cause the horrible pain all over my body randomly throughout the day. It is so debilitating.
Praying for you and your recovery! Thanks for sharing your journey. It means a lot. 💜💜💜

[alightinthetent]

Ugh I’m so sorry to hear this is happening. It is so surreal and weird and bitter sweet to taste (or retaste) normalcy, then to have symptoms come back. Praying for you and for all of us dealing with those realities. ❤

Also your description of the “gray zone”—of feeling with it, but realizing you’re not so much and getting easily agitated by conversations with those close to you is so relatable.

[teresaparvin]

I'm 1 and a half weeks post my first patch. Relapse is my biggest fear.

[DMHCre]

Ugh, man. I really wish the patch had worked for longer. I'm bummed for you but also hopeful because the fact that it initially worked seems like a sign you're getting treated for the right problem. I just hope there's a long-term solution.

[emilyraaserud]

I’m sad this didn’t stay longer for you, but happy you got such valuable information. What was encouraging to me from this video was that you said that intelligence and ability to be upright is still in there, it just needs the right tools. I think that and that you got to feels some normalcy for the first time in years deserves a little celebration. It really sucks it didn’t stay for long, but I’m hoping the knowledge the ability is still there is encouraging.

Yesterday sucked for me and seeing that today encouraged me in my journey a bit, thanks 😊

[marienkaefer]

On one hand its so great to see, that alle abilities are still in your body. I hope, there's a way to really keep it.

On the other hand it might be very frustrating to see, what potential you can't access to right now.

(reminds me a lot of my depression coming and going)

I send you hope and a big hug, if you want. You are so great!

[VernCrisler]

Hi Jen, Hopefully, the doctor can find the point of leakage and get you fixed up for good. No one should have to suffer this much.

[sophiegeek]

Sending love, it's so difficult when things don't go as hoped for ❤

[parkertruluck]

I’m sorry your back to your old normal, I hope you can in the future get back to what you got to experience for a couple of days, and I hope that you got to enjoy some of the time when the patch did something.

[lisacook]

Relearning normal and symptoms can be hard. But now you can notice more to have flat time. Back to prepatch state does suck. but this means taking the next step in treatment plan though.

[kimkarwick]

Well it worked for a little wile so there is still hope it will work permanently in the future you got this just keep going

[erictaylor]

9:40 I can almost see a buffering wheel on your forehead Oh wait, my internet was actually buffer in that exact moment.