HOW WE MET // the Brain Leak Doctor who CHANGED MY LIFE with Patching
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- čas přidán 30. 06. 2024
- Welcome, fam! I betcha me meeting my CSF Leak Specialist did not happen how you think! Today, I'm sharing a deeply personal journey that's been a game-changer in my life: exactly how the quest to find the right doctor for my CSF Leak (Cerebrospinal Fluid Leak) finally came to an end. Join me as I talk about the highs, the lows, and the unexpected twists that led me here. It all began with what I thought were chronic migraines, but the symptoms didn't quite add up. Little did I know, this was just the beginning of a complex journey.
I know many of you are here because you've been a part of my story. You've seen the struggles, the doubts, and the moments of sheer frustration as I navigated through misdiagnoses and encountered doctors who didn't quite understand. But let me debunk a myth: being on CZcams didn't grant me any special treatment. It was a grueling path of being overlooked until I found a specialist who truly listened and believed in my symptoms matching a CSF leak.
From being initially dismissed to finally discovering a doctor who saw beyond the surface, this journey has been a rollercoaster. And here's the takeaway: never, ever give up. Even when it feels like the road ahead is bleak, finding the right doctor can change everything. I'm here to share my story not to dwell on the past but to inspire hope and perseverance for anyone facing similar health battles. Your journey matters, and there's light at the end of the tunnel. Join me as I unfold the details, because finding the right doctor is a game-changer-I'm living proof of that.
If you HAVE POTS and SUSPECT A LEAK, watch this:
○ POTS vs. Spinal CSF Leaks: • POTS and Spinal CSF Le...
○ Main WEBSITE: mommingwithmigraine.com
○ Daily Life: mommingwithmigraine
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SOME RECENT VIDEOS…
CSF Leak Diagnosis & Treatment (2023):
○ Suspecting my “migraines” are a Leak: • Am I MISDIAGNOSED?! //...
○ 48-hour Flat Test Vlog: • VLOG + TIPS: The 48-ho...
○ Brain Leak MRI Findings! • SHOCKING NEWS // My OL...
○ Learning I'm getting treatment! • CONFIRMED: A BLOOD PAT...
○ Wavering on the path forward: • "I think I was wrong" ...
○ Choosing blood patch vs CT myelogram: • My Spinal CSF Leak- BI...
○ What is a blood patch? • What is a BLOOD PATCH?...
○ What the patch procedure was like: • My First BLOOD PATCH P...
○ Blood Patch Recovery weeks 0-2: • Blind BLOOD PATCH RECO...
○ Blood Patch Recovery weeks 2-4 • RECOVERY PART 2 // The...
○ CT Myelogram Plan: • Procedure 2 BOOKED // ...
○ Q & A on patching, etc: • Q&A // Blood Patch Upd...
○ Day Before Myelograms & Patching: • CT MYELOGRAMS + PATCH ...
○ CT Myelogram Procedure Day VLOG: • Day of CT Myelogram //...
Medical Gaslighting/Diagnosis Roller Coaster videos:
○ Dr. Phil Show - Medical Gaslighting: • I Went On DR. PHIL! //...
○ Dr. Phil Q&A: • DR. PHIL SHOW Q&A // T...
○ CSF Leak Diagnosis Update: • CSF Leak Diagnosis UPD...
○ After Medical Gaslighting: • After MEDICAL GASLIGHT...
○ Sick Day Vlog & Canceled CSF Appt: • Quick SICK DAY VLOG, &...
○ Being Refused a Spine MRI: • Diagnosis Story UPDATE...
Content ID Code: FWLDZZNR3TCEWOTG
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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!
I agree with people requesting their imaging and looking over it themselves. I requested my 'normal' scans and blatantly saw extra thecal fluid on my spine scans, I pointed the area out to my neurologist and he agreed it wasn't normal and that's how I was referred to a csf leak specialist. Ive now seen my neurosurgeon and will definitely be getting surgery to seal my ventral dural tear I the new year! I really can't wait!
Its great news that you're feeling so much better, I hope to feel that way too. Leaking is certainly getting old.
Can u kindly share your email..i also feel something fishy with my cervical spine mri ..need to confirm from someone ..
@@roydondsahaving another MRI tomorrow what are your symptoms
These videos are always a punch to the gut... My ENT (I originally thought I had a cranial leak due to some fluid, despite all my other symptoms pointing to a spinal leak) also did the whole "why are you pushing for invasive tests" thing. He phrased it more like "I don't want you to have to go through all those invasive tests if you don't have a leak". I don't want those tests either! I'm terrified of them! I don't know how I could make it through them without passing out! But I still desperately want to be evaluated! Because so many of my symptoms point to a leak and I am very, very sick... It's so disheartening that so many of us have these terrible experiences with doctors. And it makes me even more grateful that you share your story, because it gives me hope and resolve to keep trying
So glad to hear you doing better Jen. You're a rockstar! Personally I've given up for now. I'm so tired of all the doctors, the strange looks, the "pills", the gas lighting, and all those follow up appointments that get me no closer to a resolution. Hopefully, maybe, someday I'll try again. For now I'm just trying my best to live through my symptoms.
It is amazing the difference between you (even non-Migraine Jen) in your videos from older videos and now. It feels like we're actually meeting YOU for the first time. I'm so glad that you were able to get in touch with your doctor and get patched, and I hope that others in a similar situation can also get treatment and get patched.
I hope so too, I hope all of this helps someone else. It's crazy to see then & now. Love how you described it. Nice to finally meet you, internet 💜✨️
Thank you. My daughter has had a history migraines. The past month she had been having convulsions/seizures.
Your videos are helpful. The doctors do gaslight a lot which adds so much stress on a already stressful situation.
I have given up. I started having headaches at 21. At 36 I started having lower back pain. I am now 44. I got gaslit to absolute oblivion. I have even given up with other medical stuff and with doctors in general. I am very happy for you though! You look like you're doing so much better! 💙
Me too! Given up here in Canada where health care is dire. Better in third world countries.
But are you sure it's csf leak in your case?
It didn't show up in mri of brain or spine?
@@roydondsa I am very sure it is not a leak. I think I have IIH but ofc you cannot be sure until there are tests done.
@@deanne9266 I am so sorry, it is horrible thing to hear. Unfortunately I think the healthcare is not better elsewhere. There are many systemic issues worldwide. It is not entirely doctors' fault either. But I live in EU in Czechia. We are thought to be among the countries with the best healthcare in the world. And it is absolute horror show in here. I feel so much for people who are worse off, it is truly breaking my heart 😌
I’m guessing it’s Dr Ian Carroll. There aren’t that many and it sounds like him
I was diagnosed with vestibular migraines a few years ago as I was already a migraine sufferer.
I knew I'd been misdiagnosed and fobbed off as all my symptoms started after a head/neck trauma almost 10 years ago.
Two weeks ago I finally got MRI proof of my CSF leak after going to see a neurologist who specializes in CSF leaks.
I love this story because you have a fantastic doctor now and you’ve pushed through for so long and because you’re getting some help! Yay! I also had a friend who was popular in the CZcams world (we were friends before she was but not actually the point) and I also know how HARD CZcams can be and sometimes it can absolutely go against a patient!! So I’m really thankful it worked for you but if anyone is reading these comments thinking that’s the best way to get help, it has a downside too. It’s not all roses all the time! So really thankful for the good stuff and be aware of the hard stuff 😊
Oh Jen, I think I missed a video, last time I caught I think you were back from more patches. You look SO different, and sound so much better. I may have cried a little. Also I'm sure we'll lose you back to a better life, with hopefully nothing neurologically interesting.
I'm so happy for you that you've finally received treatment for your CSF leaks! Not only that it improved your quality of life but also you're no longer in danger of developing life threatening complications associated with chronic CSF leak. These complications include according to Mayo Clinic meningitis, bleeding to the brain, and tension pneumocephalus, when air enters the spaces surrounding the brain.
Love your viedo's!!! Love listening to you and how you explain everything! From your viedo's on csf leak and treatment and the way the dr has treated you, i am pretty sure i know who your drs is. I watched a lot of viedo's on csf form of drs after my neuroligist referred me to neurosurgeon specialist for csf leaks. Hope this makes sense! Thank you for all the people you are helping!!
This was super helpful, since I'm starting the process of getting evaluated (need to start by finding a good neurologist - the only one in my town is not very good). Am I remembering correctly that you told me there was a CSF leak specialist in Denver? If so, that might be my best bet, since it's driving distance (or a very short flight) from where I live and I have lots of relatives there that I could stay with while there. Now I need to go check out your 48hr flat test video.
Thank you for sharing your story! My own story has a lot of parallels to yours, although I’m only in the beginning stages of learning about CSF leaks. I appreciate your online guidance as I’m trying to figure this out!
You're welcome!! Best of luck with yours. Reach out if you need anything or have a question!
@@MommingwithMigraine Good morning Jen! I guess I have a pretty generalized question. Any advice for someone who, much like you, is not being taken seriously by their local doctors (in pertains to IIH and a potential CSF leak)? :) It doesn't help that my imaging is inconclusive. I wondered if you found a group/doctor/support network that helped? I appreciate it!
Your energy is so inspiring! I so understand about the gaslighting from doctors. I get that a fair amount as I have a ton of weird and terrible things going on (and slowly getting worse) with my health and no doctor to really investigate and try to actually _fix_ any of it. The few I can get in to see just want to throw drugs at me (which of course cause new problems to add to it all and are always just band aid solutions anyway), or tell me to take deep breaths and manage my stress levels better. Worse, because I was dx with MS years ago, most doctors blame it for pretty much everything - even things that are not usually associated with MS. I have some of the same symptoms as you, and some things are quite different. My GP just says "that's strange" when I tell him what's going on, and that's the end of it. I'm in a smaller city in Canada, so medical care is really tough to get. I can't even see a cardiologist because there's only one for the whole city and so far my symptoms aren't deemed bad enough to make the list. Anyway, it's a real encouragement to me to see that you've actually found answers, a doctor who takes you seriously, and actual real treatment options that can help you get better. That's so what we're all hoping to find!
We are missing your vlogs, your motivational stories and positive attitude inspire me .
Aww, thank you!!! Are you missing a particular style I used to do? Please do elaborate 🙏 💜 I've been feeling an itch to get back to my old style of videos, that's why I'm so curious
I see my neurologist in a few days, and I'm hoping for some kind of diagnosis! I have ALL of the symptoms of a CSF leak for 20 consecutive days, but doctor's are doubtful since i haven't had a lumbar puncture or anything. BUT I did fall and landed straight on my tailbone, right about when this all started. Seeing your journey worries me that I will be struggling to get an answer for a long time. I'm actually incredibly lucky to get a neurologist appointment so soon! Many in my area are booked out until April. It's so upsetting because i can't be upright for longer than 5 minutes, and lately, it's so bad, i dread getting up to quickly use the restroom & can't even get food for myself (not that I'm very hungry anyway). I will straight up lay on the floor at the doctor office or ER lobby because i get so nauseous, sweaty & miserable. Sorry for the venting but it's so frustrating when doctor's don't listen! I'm so happy you found your doctor 🥰
I'm super happy that you have had some kind of positive results!
Dr. Carrol is one doctor who has been doing patches based on signs, even without a know leak spotted...
I've been not quite so lucky, having been twice to one of the top research hospitals, and two EBP's, a year apart (50 mL) and I'm still spending 60-80% of every day in bed.
Hopefully you can get a permanent patch to work, or even if it takes several...
Can I suggest you write a collaborative case study with this doctor, or one in his clinic? To publish in the appropriate field.
Maybe if this was a peer-reviewd publication, more professionals will be open for the evaluation phase.
Because, as you told us, so many doctors asked you: "why do you want to have this invasive evaluation?"
You have the answer that hey have not payed enough attention to: "The benefits are greater that the risks".
Yes!
Looks like you are alot better congrats!
I commented last week, about me giving up on the medical diagnosis. For a while I had convinced myself that the doctors where right and there was nothing wrong with me. Since I started taking nortriptyline my symptoms seemed to have gotten a lot better. Until last night while I was sleeping. In the middle of the night I started feeling that weird headache coming on, enough to notice but not enough to fully wake me up. After a bit of tossing and turning, I was laying on my stomach and all of a sudden I had a massive leak out of my nose. It was enough to wake me up, feeling like I had a bloody nose, but it was just clear liquid. I covered my nose with my hand and my whole hand got wet. I got up and tested the liquid with glucose meter, and it registered 121 mg/dl!! After getting up, it stopped leaking, so I laid back down and while it was still dripping, I wiped it up with a rag and laid on my side. Eventually I was able to get back to sleep. Then I was at work, bent over to pick something up off the floor and my nose started leaking more than I've ever seen! It pooled up in the palm of my hand and I slipped to the bathroom and it continued to leak about 2 palm-fulls of clear liquid. Scariest thing ever! So now, I'm again convinced I have a CSF leak... I'll be attempting to get back in contact with my doctors, but still not sure they'll believe me. Anyways, I just had to comment here because you're my motivation for continuing to insist that I'm actually leaking. Now I know for sure I am and I was not just losing my mind.
You seem to be doing so much better it’s wild! So this patch has still been holding up well? Are you still having migraines at all?
Hey thanks! Definitely improved. They've been wearing off after about a month. I'm currently almost 3 months post-op so I'm symptomatic and back to migraine loops again, but it's actually a lot better still. I'm scheduled for more patching in the coming months 💜 idk if you've seen my plan, but we are trying to narrow the exact spot.
I do have hemi plagia. It came on like a stroke. Lasted for 8 months. I still suffer with left sided weakness when I have a migraine. Also slurred speech and blurred vision.
Thanks for research
Hmm, I wonder if it was the same person who came up with the flat test who's treating you now. Anyway, nice to hear your story and how you eventually made your way forward, especially after having suffered your symptoms for so long.
My 15 year old daughter has been through hell the last 2 years trying to figure out why she’s had a chronic headache and is dizzy amongst other symptoms. She’s got hyper mobility and pots. Tge university of Iowa treated her like garbage saying that there’s no way she’s got migraines everyday, and that she’s just lazy and trying to get out of going to school.. really, REALLY!! A local pediatric cardiologist diagnosed her with pots about a year ago. None of the treatments they’ve given her have helped. Last week she saw a pediatric migraine specialist, who immediately said that she has csf. Of course she has to go through the tests but it all makes sense.. so now we start our journey to try to fix this problem which all started 2 years ago after we had covid. She’s 15, and wants to be a vet, but she can’t even get out of bed some days. She does online schooling because of this. She just wants to feel normal and be a 15 year old girl again. We’ve been gaslighted by many many doctors. I pray that this doctor can finally help us on her journey. Today I’m home early from work because she was so dizzy she wanted someone here with her because she’s scared she’s gonna fall .. glad I found your channel I’m sharing it with her
Oh man I'm so sorry!! 2 videos on my channel that you may find interesting because they are talking about my symptoms are 1) Symptoms of High vs Low Cranial Pressure and 2) POTS vs CSF leaks
Congratulations! So you are cured now by this doctor?
So, are you completely sealed up now ? Or do you have to keep going back ?
Haven't seen new video from.u lately. Hoping we ok
Not sure if you have a symptoms episode, but with leaking did you ever experience gait issues or a heavy limbs feel? Like gravity pull down?
I get this! I have a CSF leak confirmed.
Did you get a face redness except your eyes surrounding while you having CSF?
Just wondering: since you are so much better and have a CSF leak, will your channel change? It seems like you are not posting as often. Not a criticism. Just curious. I have chronic complex migraines. I also have a service dog because I have mobility issues and I am deaf. He does not alert to migraines
I need help ..i think i have symptoms of csf leak but my contrast brain mri says all is fine ..what should i do next ? Entire Spine mri ?i did my cervical spine mri suggestd by my physio but i am not sure she understands all this csf leak stuff...can i send the images to you to confirm?
What are your symptoms I having normal MRI brain spine Sunday I have heds but it's fybromyalgia pain everyday my symptoms I've had loads pots etc in past
Did you have a lot of neck pain too?
Totally understand resistance to pills. Had migraines for over a decade and every body keeps telling me nothing is wrong. MRIs, blood work, etc all go no where
Brain stem aura odd…. More like chiari or brain stem compression maybe if high pressure in head.
I got kidnapped at kern medical for having a leak and a broken nose here in bakersfield I was sent to an ent that could have helped me but some lady took me to kern medical and I was not allowed to leave after a certain amount of days making me miss my actual appointment with a doctor in Los Angeles.
I thought the “but you gave birth” was a little funny. True, you could do some things and wasn’t always bedridden by your CSF leak, but everyone has different levels. You were (and maybe still “are”) a functional leaker who also has migraines.
What is a functional leaking.meaning
“Functional leaker” would be someone who has a leak, but can do some things,
Maybe get some chores done, be up for a few hours, etc
I lost hope. Was just watching your video from 2 years ago when you met a new doc that gaslit you saying “honey you don’t have a CSF leak”. I was really upset how doctors did the same thing here in Las Vegas so dismissive and won’t even do an more test. Saying I have migraines. Lol. Went to CA, AZ and Utah got diagnosed w EDS & “POTS” as well as my 3 kids
your age, cfs rhinorrra nose, choaking at night from it running doen throat..
I hope you enjoy the rest of your life with your loved ones . And respect 🫡 for carrying on . Inspired by your determination and how you are now . Best wishes .