I just wanna let you know watching your videos made me bring this up to my mom. Her nose has leaked for well over a decade. Probably closer to 2. I waited until like maybe 6months ago to bring it up to my mom. She finally met with thay Dr and she brought it up. I warned her she likely wouldn't be taken seriously though so she wasn't hopeful. The dr asked one question about the drip and ordered a test. She has to collect a bunch of her drippings. The dr also confirmed testing it on a glucometer. Said its obviously not full proof. But it's 100% true. So thank you. You speaking out about your symptoms and journey may have a serious impact on my mom's quality of life. And as someone who's been dealing with cancer since 1999, she appreciates it more than either of us can articulate.
❤❤❤❤ please let us all know!! We need to spread awareness so chronically ill people are not dismissed bc they are already struggling - even from cancer! Send our love to your sweet mom.
I remember having a similar feeling after finally being diagnosed with ASD and ADHD, the relief of having your symptoms finally being believed can be so unreal at times. I cried for like an hour after each diagnosis. These are two different areas and levels things, I understand that, but also a very big heck yeah at this step in your journey!
Huge hugs for you. I went for 10 years with a disabling spine injury before a judge finally pronounced it. Meanwhile this injury kept me from working while changing my entire life. I lead a very active life before the injury and it forced me into a seriously sedentary life in which I lost friends and my home. I remember the day I got the disability judgment...I cried. I cried because someone finally believed me about how my injury had permanently changed my life. I swear it's like you're charged with being guilty and have to prove your innocence. I'm happy for you, scared for you and emotional for you. I get it. Big hugs.
I am so happy for you!!!! This is my exact story. It's unbelievable that something that's so debilitating, related to head/brain/spine trauma, is not given a standard workup with differential diagnoses. I've watched so many csf leak videos from Stanford, Mayo, Duke + EDS, POTS on YT and it needs to be taken seriously. I had head trauma from surgery and no one cares - yet I can barely stand or sit up, have sudden pots symptoms, dizziness, bouncing low-high head pressure, horrific postural headaches, whooshing pulsatile tinnitus, neckaches. THANK GOD YOU SPOKE UP AND GOT HELP!!
Thank you!! I am going to try for Duke or Johns Hopkins nearby first! You inspire me. Thanks for raising much needed awareness!! They need to put you in a PSA campaign and instructional videos for new and old Drs!!
Wow, I'm so happy for you! Journey COULD be almost over! That's exciting to contemplate. I wouldn't worry about the dye. It's harmless and they have to be able to see WHERE exactly the leak is. I really hope this is the fix you've been praying for. You deserve to get your life back.
I'm crying with you Jen! I am so happy you are finally getting the answers you need! I don't think anyone realizes how emotionally traumatizing medical gaslighting is until they experience it themselves. I have been dealing with it for two decades, and I know others have dealt with it their entire lives. Seeing you get validated gives me hope and the drive to continue advocating for myself. Thank you so much for being vulnerable and honest. You are giving your viewers comfort knowing we aren't crazy for feeling the way we do. You are letting us see that 'normal' is different for everyone and we can accept ourselves as we are right now, while continuing to work towards someting better. You have shown so many people the real harm in medical gaslighting and the emotional trauma it causes. You are you, all of you, and you have made my life better by being here. ❤❤❤
Finding a good doctor is how I found out I had cancer. Unfortunately it is already stage 4 and I am about to fight it. She also had me diagnosed with so many things that my other doctor completely dismissed. Good doctors are worth their weight in gold!
This is so wonderful, and I am SO happy for you! Crying in my living room. It's so wonderful to see someone in the chronic illness community being so validated. 💖
I haven’t commented in quite a while but this deserves a comment. I am so happy for you Jen, prayers for your outcomes in the future! I hope this continues in a positive direction!
Jen. I have MS. These types of MRI using dye injected into my brain is yearly for me. This stops the lesions that is on my brain or spinal cord. Drink lots of water after to rind your body of the dye. This test can lead to a treatment plan. For me, MRIs can alert to possible inflammation and develop a new plan. Do the test my friend. Blessings of health and peace
I would lay off nursing day of and after. Better safe than sorry with little ones. Not nursing for those days should be fine. Milk production is stable and babies older.
How much longer do you expect to breast feed? Could you schedule the test to occur on a date that is after the natural end of this period, or would that create a problematic delay?
This is great news! I'm so glad that you finally got the attention of the right people! You have made such a titanic effort, poured so much energy into self-advocacy, and somehow maintained your momentum, and you are finally getting a hard-earned well-deserved response from the knowledgeable professionals that should have been reached years ago. Thank you for documenting all of this. I hope this leads to answers and remedies, and maybe even a change in the process so that fewer people in the future will have to take such extreme and persistent action to get what they need.
Congratulations !!! I really understand how you feel I’m on the same they say is panic disorder I’ve been trying to get evaluated for POTS finally I got my tilt table test next week! Now praying they see something
My mother invented this tradition for our family. When we got good news we would hold hands in a circle and jump up and down yelling "Happy circle, happy circle." This would be worthy of a "happy circle." You can do one in memory of my mom if you want..
Hope you finally get relief soon ❤. I started to have symptoms last August 2022 after a chiropractor adjustment. I had two prior brain surgeries in my childhood to remove a brain tumor. My local neurologist brushed it off as migraines as my MRI/EEG came back clean. Didn’t suspect CSF until I watched more videos here on RUclips. Once I got back from Disney, I started to complain more and more about my my symptoms of nausea, position headaches, ringing in ears, can hear my pulse, and losing alot of weight. He finally sent me to a headache specialist at a bigger hospital and the neurologist said right off the bat you are heading down the path of low spinal fluid from a CSF leak. My recent brain MRI and CT of my neck came back the same as previous scans but she still thinks there is a leak somewhere in my spine and will be getting a lumbar puncture in three weeks.
❤I feel your relief of your professionals having eventually decided to offer the patch & yet this is the fix for a csf leak at present . If I were being offered this , I would feel that it seems to be the only possible fix & there is no way of knowing if it will work the 1st time , if they may need to do a 2nd or 3rd patch . If I were to be offered this I would feel that I need to give it a try even though it feels like an enormous decision , yet it is debilitating to continue with these symptoms every day ( I would feel that I would have to try this because there does not appear to be anything else that could fix it☹️. It is very scary to have to go through this procedure . I tried saying to one co sultans that I get a different type of headache when I lay flat - feels like too much pressure … they shut me up with sone comment that I can’t remember what if was now . Our voice being heard is all that we need . Best wishes if you decide to try the patch and all that it entails ❤
I'm so happy for you!!! While for a different reason, I absolutely understand what it's like to be searching for a reason for what is wrong with you and the joy of figuring out what it is, even before the actual treatment. I hope that they are able to fix this so that you no longer have to deal with a CSF leak. I also hope that if/when it is fixed you have a similar response as a I did to my valve replacement for a leak, which is more or less a domino effect of symptoms abating. I can't tell you how happy I was, and if not for all the drugs I was on at the time, I would probably have cried to wake up and not have a headache after the surgery.
No idea whether I have a leak or not (it's definitely possible, especially considering I sustained 14 concussions of varying severity in the space of just over 6 years, on top of having EDS, but don't know), but, because of watching your videos, every time I get hit with what has thus far ended up being just a rhinitis flare, I still always check it with my glucometer, just to make sure - normally when I get them, it registers as "low", but this last time it registered as an actual number (only 20-something, but still higher than all the previous times), so I will definitely be keeping an eye on that, and I know to do that thanks to you. But I know what it's like to finally be believed and finally have a dr. who's willing to order the appropriate test - the sheer relief it brings, even if we were never shaken in our confidence in the first place about whether or not we were making the symptoms up (I had hard evidence, and my primary had my back the whole way, but she couldn't order the test herself, otherwise she would have done it immediately, so we had to get a specialist to do it, and the first 4 I saw flat out refused). Looking forward to the update on whether or not you recommend the myofunctional therapist you were seeing, but you've got big decisions ahead of you right now, so the update can definitely wait until you're feeling up to it.
In so happy for you a your Journey. There can be so much gaslighting in the medical field. I can sadly absolutely relate. validation is so important. I pray that it be used all to God's glory!
I went for years knowing I had some level of Hydrocephalus. The doctors would say that my symptoms don't fit what they have been taught. The last one I went to told me that I was just depressed. I was depressed because I knew what he was going to say. I gave up and lived with my issues. I started having trouble walking and had to start using a cane. My wife talked to my Primary care doctor and he recommended a doctor that had diagnose the issue with his Mother. Wow what a difference! He was in his 60's and a Harvard Trained doctor. It took him a few minutes to determine the issue and scheduled Spinal Tap. My pressure ended up be 35 cm instead of the normal 10. They removed some of the CSF and the difference was huge. I danced back to the doctors office from the Hospital. He send me to a surgeon and we scheduled a VP Shunt to lower the pressure. It's been wonderful, but still had more issues than I want to discuss here but it's wonderful when you have a doctor who listens to you and figures out the issue! My only issue now is he's retired. :-( Hopefully I won't need to see another doctor on this anytime soon. I'm 1 year from stage 3 cancer surgery to remove my left kidney. All went well but they only give me a 53% chance to living 5 years. So the Hydrocephalus isn't my main issue any longer. Stay Healthy and live your life like it ends tomorrow. Rick
Congrats (sorry at the same time though for what you have been going through) on your hopefully soon to come fix that hopefully reverses some of the problems that you have been dealing with with incompetent providers. It's okay to cry about the realizations of the things that you have experienced that you shouldn't of had to go through.
Lots of emotions here. I'm so happy you're making progress! Seems like such a long drawn out process, but eventually, finally, headway! Like always, your videos post on significant days of my own journey down this path. I just completed my brain MRI with and without contrast, today. I'm anxiously awaiting my results, knowing the doctors this time are looking specifically for clues and signs of CSF leak. I can understand how you are feeling. Just the thought of actually knowing what your illness is, finally, after all this time, is a very intense feeling. I have often thought about how I would feel should I get any sort of confirmation on mine. Scary and glad at the same time. If you don't do the CT myelogram, are you going to see if they'll do a blind blood patch? I feel like either way is going to be a little scary and risky, but just know that whatever you do, I'm here cheering for you to get better!
I don't subscribe to you, but I do check in on your channel every oh so often for updates. And all I can say is I'm teary eyed on my couch right now, so thankful and hopeful that your ( pun intended ) patch for everything might be coming soon. I can't wait to see more updates and hope they are all positive.
I HOPE some of the doctors who dismissed you were at that conference. Hopefully, that’ll learn ‘em. Please do whatever is best for you and your beautiful babies. I’m so glad you’re finally being taken care of.
SERIOUSLY!!! How easy is it to learn from watching videos from Dr Carroll, Schievink, Mayo Clinic, POTS & EDS differential diagnoses process. Science should be the process not gaslighting, guessing, or hunches...
I can be so angry with docters who think they know everything, but they dont. I struggle with pain for years. They said it was nothing and im to young to have rheumatism (28) and know finally they said they are going to test me, because i cant lift up my glass anymore. I hope you have answers soon and that you will get your life back
Hi. I just want to say that you are my new inspiration. I have been going through almost word for word what you have been through. I have EDS, dysautonomia and Gastroparesis. I have apparently had a migraine every day for the last 5 years. Until I discovered CSF leaks… I researched and googled and joined groups and am pretty sure I go from high pressure to low. I leak clear fluid out of one nostril as well as have a post nasal drip. I’ve had sinus surgeries and have osteophytes (spurs) on my cervical spine. I have reverse kyphosis (military neck to the point of my neck bending more in the other direction. I was a nurse before this horrid issue landed me bed ridden for a very long time. I have seen 3 different specialists and many different GP’s who look at me like I’m a hypochondriac. They tell me I have anxiety which is causing my migraines… the only times I feel anxious is when I have to visit a Dr. I had a magnificent Assoc Prof who straight away diagnosed csf leak just from listening to my symptoms and performed a non targeted blood patch which made me feel good for 2 days but then bam back on the ‘migraine train’…. I have only just come across your channel and I want to thank you. You have empowered me to advocate for myself and keep insisting for the tests to prove that something more is wrong than just the migraines . Sending you healing well wishes and hope that by the time I get to the end of your videos you have been treated and sealed. Big love from Australia ❤❤❤
With ups and downs in life, I think you on an UP. Enjoy those moments of grace and cherish them. That's what keeps us going. Just like with parenting. If you don't remember the moments of joy, your children can (and will) drive you mad.
I hope that doctor was at that conference ("Honey!") Happy tears for you. I'm in the process of getting another evaluation from an "unremarkable" CT scan and that gives me hope. And YOU give hope to a lot of people with invisible illnesses. Cheers!
I’ll keep my fingers crossed for you. Would your myelogram be a DSM? I’ve been lurk watching your videos because, although we would otherwise have nothing in common, our journeys have been very eerily similar. I have a myelogram coming up next week. It’s been 5 years for me now, and the impact has been, well, you are one of the few people who can empathize, and I don’t need to say more. I would say that we’re aware of the same caveats involved (the myelogram), I think the tap concern is worth risking. In this case, the surgeon knows precisely where the hole is if it doesn’t self heal, and they can fibrin glue it with extreme precision if it causes a leak.
Jenn, I had a blood patch. When I had my first baby, the anesthesiologist punctured my dura…and that was the worst week of my life. They would have to sedate me because the pain was so bad. I remember very little of that time, bits and pieces because they thought I suffered a stroke, but my CSF was leaking. That is the worst migraine to live with, let alone if you have two children. The ONLY thing that saved my life was knowing my aunt was a nurse in the ER and knew to perform blood patches on individuals like that: the blood acts as a sealant/band-aide to the “bleeding” dura and heals itself that way. I don’t take blood transfusions, so the blood used was my own. I’m not sure how my life would have turned out had I not had a medical field worker as someone in my family. If it improves the quality of your life, I would highly consider that option.
Oh my gosh. Yes! Your support and encouragement and story were such a great thing to read this morning, thank you so much. Stay tuned, tomorrow I share the plan!
That’s absolutely insane it took this long, but I’m glad they finally move with your case. The doctor could’ve given you a bit more information than an email, but I’m glad that things are going out positive progressive direction. Are they able to recommend you treatment options if you decide not to do the milligram? I don’t blame you for wondering about the risks, I think it’s always important to consider those before agreeing to anything medical.
I know how it feels , I suffer from chronic headaches due to 6 brain surgeries, brain hemorrhage , brain hernia , meningitis , hydrocephalus and intracranial shunt. While writing this i have had a horrible headache for 3 days non stop. PD: you're beautiful
I have a CSF caused by scoliosis. It would involve a novel procedure to fix it. I keep getting doctors concerned and saying somethings wrong but it never goes anywhere from there. Hopefully I get a medical breakthrough you seem to be achieving as well.
Dye in your body is nothing compared to dealing with what you have. The Dr's doing the blood patch will explain patching the whole they create in order to fix you too. You got this far and I'm assuming your faith has been strengthened by all you have been through. I cried with you btw. Lol I can't wait for the day I have that realization moment you just shared with us for myself. I know it's coming. Still wish you could find a way to let us know what Dr you saw. I swear I get leaks, I have hEDS and pots( but the pots comes hard when my ear leaks or nose or my back hurts where I had spinal taps) I have upright headaches near daily during those days. I'm so tired of Dr's. I won't give up. I have cci and aai and they want to fuse my occiput to c2 but 3 and 4 are too hypermobile. I just want to see a Dr who will give me a chance. I am so incredibly happy for you. Don't turn back because of fear. GOD has not given us a spirit of fear. He gave you the answers which you worked very hard for. Go for it!!! No fear!!!
Once you finally get properly treated, you should send a nice long letter, complete with copies of your diagnostic and treatment paperwork, to that "honey " of a doctor. Be sure to refer to her as Honey, in the final sentence.
This process sounds very familiar and I think maybe I have the same doctor as you! I am also in the same boat as far as approaching a CT myelogram which I've been trying to avoid at all costs. My first multilevel blood patch brought no improvements - my doctor gave me the choice to try another multilevel patch, or go for the myelogram to try to find the leak. Currently I'm avoiding thinking about it. The myelogram terrifies me for all the same reasons! But now that I've been through a blood patch with not even any temporary improvement, I am hesitant to do another one without knowing the leak location... it was expensive, and it required people to take shifts helping take care of me and my kids for weeks on end. I don't know if I can do that to everyone again for something that may not work again. For this reason I'm considering jumping to the myelogram - but I'm so scared. I really relate to this video so much. I am so glad you're being validated and these doctors are wanting to help you. I hate the weight of these big decisions and I am absolutely praying for you ❤
Dr. Cutrer, Mayo Clinic Rochester, MN, the best doctor ever. I have Hemiplegic Migraines, the rarest of migraines. I've had migraines since I was 11. I am now 62, and this type showed up 24 years ago. Please, if you can, go to see him. I have sleep apnea too.
Recently I had a knee injury. Doctors in the hospital were not so gentle and made it even worse! Luckily I went for a private visit to the orthopedist, so I could finally have the necessary scans! Currently my knee is better :) Some doctors shouldnt have got their Jobs!
Hi there, you are not alone i had an injury in the head in 2010 and symptoms pop up the first symptoms was ear pain and tinnitus and bad bad headache i went to a lot of doctors and lots of MRI and they said your all good it is all in your head so i just believed them and go on with my life with all the headaches and ear pain and dizziness and stiff neck and shoulder, speed up to 2021 i had an eye issue and went to the doctor and ohh wait something is not right with your nerve eye and did an MRI and behold csf pressure was found. I don’t know why it take 11 years to be diagnosed but I’m surely blaming incompetence doctors. I hope you will be better soon and you can get all of this behind.
Congratulations! If you want to know what a CT Mylogram is like & what a blood patch is like, I can share… but I’m soooo glad you are being believed!!! 🎉
Congrats Jen, I'm so happy for you (and your family), that after such a long journey you've been on, you finally seem to be on the path that was always meant to be!!!! The one that will offer you the opportunity to 'live your best life.' I will keep you in my prayers Jen and ask Jesus and our beautiful Holy Mother Mary to especially protect and bless every hand; every instrument used; every person that comes close to you in the operating theatre (if you choose to do it). I will pray that if doing it will make life better than you will feel to do it; alternatively if not - then you won't.. What an amazing person you are!!! I just subscribed tonight after binge watching a few vids and you have touched my heart. Trust in God Jen to guide you!! He truly is an amazing and Merciful God.. God bless🥰🙏
The medical community needs to get off their high horse. It hurts their egos too much when a patient has a better understanding of whats going on in their bodies. They need to be more humble instead of assuming every patient is an idiot compared to their "superior intellect"
I understand how scary the prospect of having a needle full of "dye" inserted into your spinal fluid seems. I also know you have had a lot of very negative experiences with doctors up to this point. But I hope you find the strength to go through with the testing and treatment your doctors are recommending. You have fought so long and hard to finally be taken seriously. You are almost at the finish line. If you stop now, what has it all been for? Validation is great and all but is that really enough for you? Whatever you ultimately decide though, I will support your decision. You are the only one who has to live in your body. You are the only one who can decide if the potential rewards are worth the risks.
Good to have a doctor who likes people who knows whats wrong with them saves the guess work. If it wasnt safe they wouldnt do it. Buy the book parpare for surgery by peggy huddleston. Helps with a lot of issues and comes with CD. Highly recommend it
It is so exhausting not being taken seriously by these professionals . I’m on a very similar journey and feel I’m not getting any closer to the professionals identifying why I have v similar symptoms : POTs EDS top of head daily pain ( positional related ) positive flat test … since summer 2016 … past counting the years now . Had full spine and head mri - we don’t SEE csf leak - but we could do an ALLERGY screening !!! That was a yr ago but they ‘ forgot ‘ to write to do allergy screening & therefore didn’t do it. Feels like CSF leak to me … but they tell me SOMETIMES we don’t know why you are having these daily migraines / positional headaches ( debilitating type ) need to be horizontal & need to always ‘ sit ‘ with legs horizontal & upper body reclined and have standing intolerance etc etc … i attend the so called ‘ best ‘ neurology hospital in England and they can’t join the dots … they don’t seem to take it seriously at all … they said 3 professionals were meant to look at my MRIs but only 2 did … it is so exhausting to ask them to please tell me why I have these symptoms each day since July 2016 … it feels like a waste of time attending apts and seeing more and more trainees guessing what my symptoms are … Because I also have ms they only want to focus on getting me to say yes to ms medication ( no cure - but lots of msg side effects ) I say no Thankyou . So they say lets do another mri and then you might say yes ! No I won’t . I choose to say no to the heavy duty medications . But I would like someone to tell me why I have CSF leak symptoms and can’t do what I could do BEFORE the csf leak symptoms began . Don’t get enough nose leak to give sample in a bottle. I feel they don’t take me seriously because csf leak is not their priority / or the right people didn’t look at my mri (?) I had an apt this week and asked to SEE my mri ( seeing as it’s my brain !) to me it looked like it was sagging (side view ) .. but the consultant ( trainee was not wanting me to look at my MRIs ☹️. I would like copies of my MRIs but I don’t think they will give me them . I’m in london uk , does anyone know if you can obtain copies of your own MRIs ? They did not offer any copies to me when I showed interest … they were only interested in me saying yes to ms medication
I don't know the UK rules but I'm a little infuriated for you. It shouldn't be hard to see your own images. BTW I have a video on my channel about the findings that are on my MRI, I detailed them so you can make sure your doctor at least knows to check for those specific things!
That's awful about how your being treated in the UK. I hope you can find another opinion there or maybe send your story & scans to a US Dr... I read about UK patients coming here for specialists.
hi this is tom im induring dailey head pressure and headaches also.I also get times of vision loss for 10 to 15 minutes.I had a mri done also and ruled out no tumor.Sometimes the headaches and pressure are unbearable and my neck is sore alot and tensed i get spacey and my temples swell when i eat.I also hear like something drainiig in the back of my head its weird genereally when im lying down
The myelogram dye seems ok - I had contrast dye MRI. They have alternatives to lumbar puncture tests with dye if you suspect a cranial leak? Mine is likely cranial. Definitely go to Stanford, Mayo, Duke, Hopkins or Dr Hepworth - you deserve help. It's probably worth a risk with top experts doing a very tiny needle injection.
I'm sorry you're leaking too! I have had dye for MRI too, but I'm weirded out by it being straight to the brain because the BBB is usually kept so tight. I don't know of alternatives... but I'm 100% with you - this is one of the well-known docs and I'm so blessed to be able to be seen by him 🙌
@@MommingwithMigraine I hear you! The whole thing is scary making more punctures where one already exists!! 😩 The dye creeps me out too. I hope you can find out how to flush it out fast and avoid any weird reactions. Still, worth it!! I'm totally inspired you found a top doc!!! You're a fighter and help me stay strong.
🎉 THANK YOU AGAIN JEN!! And your supportive fam. I hope you can do a PSA & awareness campaign with your new drs!! They need to post a YT tutorial for every ENT dept, headache clinic, ER, etc. Thank you for all you have done for us and yourself. Hero status for me. Lifesaving info!! 🎉❤🎉
it sounds like the reason you were able to get this care was because of your youtube videos/tv appearance right? that's how these Drs found you? I'm so so happy for you, but that makes me sad for the rest of us. it shouldn't be so hard to get competent care /: regardless, thank goodness for you, I hope things are only up from here!
I'm thinking, sheesh, I guess it's time to make some sad 😂 horizontal videos or go on a reality show as a flat contestant. I'm so glad her story got attention, maybe we can use it as a template to show our Drs! I'm gonna make mine a BIG playlist!!
I know your scared about the myelogram. One of specialist you might be seeing had a quote I like of “we do a myelogram not to see if you have a leak, but to find where it is”. I may have miss quoted a little. A CSF leak can be miserable. I know first hand.
I am still on my journey. I just had a second blood patch. I’m hopeful that takes care of it. My first blood patch helped me a lot. In general, I lay down a lot to find relief. I think you have a good chance to find relief. I have only been watching your channel recently. I watched one where you talked about fluid from your nose and I thought “I bet she has CSF pressure issue”. I also saw your video on your brain MRI and the Bern criteria. I’m glad you have made it to the right place.
Spinal CSF leaks don't cause CSF to drain from your nose. They can cause irritation to cranial nerves and cause a runny nose. Is it more likely you have a cranial leak caused by your underlying high ICP? If so, that won't be addressed by a blood patch. Who is the leak specialist, and what did your imaging show?
It took me 19 years to get my records from the severe car accident I was in and my suspicions that I wasnt being told everything about the severity of my extensive injuries so I couldnt really understand how it was long term affecting me some 19 years after the fact..... I got the case notes and images yesterday... theres bleeding in my ears notated, broken bones I wasnt told about, and indications of spinal injury given that there are like 20 MRIs, 20 cat scans, and 40 xrays of my full spine and this like filing cabinet worth of documentation was kept from me by the legal custodians in a position of responsibility for my well being.... I have had seizures, fainting spells, noticed my self losing hearing, and even lost nearly all of my vision during those 19 years and now I am finally able to sift through the near endless notes and images and put together what actually happened and why i might still have pain and difficulty walking.... I dont remember having the severe spinal deformity I currectly have before the accident and I was told it was bad posture and high body weight.... (For context my spine has a sharp bend diagonally away from what would normally be a natural s curve so mine is more like | \ shape.... I may have sustained a spinal injury. and in all the years of me asking questions I was told even the numbness in my legs was just me looking for attention or Durgs.
update: HERE'S HOW IT WENT AND I CAN'T BREATHE BUT IN A GOOD WAY!!!! ruclips.net/video/Y5FSD08BFGI/видео.html
When you find a doctor who finally listens to you and wants to help you, it's the best thing ever! 💜
SERIOUSLY!! I haven't felt this heard since Dr Driscoll 💯
❤️❤️❤️❤️
It's tragic that had to be said😢
I just wanna let you know watching your videos made me bring this up to my mom. Her nose has leaked for well over a decade. Probably closer to 2. I waited until like maybe 6months ago to bring it up to my mom. She finally met with thay Dr and she brought it up. I warned her she likely wouldn't be taken seriously though so she wasn't hopeful. The dr asked one question about the drip and ordered a test. She has to collect a bunch of her drippings.
The dr also confirmed testing it on a glucometer. Said its obviously not full proof. But it's 100% true.
So thank you. You speaking out about your symptoms and journey may have a serious impact on my mom's quality of life. And as someone who's been dealing with cancer since 1999, she appreciates it more than either of us can articulate.
Wow 💜😳💜💜💜💜 I appreciate this comment more than I can articulate... I'm literally moved to tears. Please keep me updated on your mom!
❤❤❤❤ please let us all know!! We need to spread awareness so chronically ill people are not dismissed bc they are already struggling - even from cancer! Send our love to your sweet mom.
I remember having a similar feeling after finally being diagnosed with ASD and ADHD, the relief of having your symptoms finally being believed can be so unreal at times. I cried for like an hour after each diagnosis. These are two different areas and levels things, I understand that, but also a very big heck yeah at this step in your journey!
Huge hugs for you. I went for 10 years with a disabling spine injury before a judge finally pronounced it. Meanwhile this injury kept me from working while changing my entire life. I lead a very active life before the injury and it forced me into a seriously sedentary life in which I lost friends and my home. I remember the day I got the disability judgment...I cried. I cried because someone finally believed me about how my injury had permanently changed my life. I swear it's like you're charged with being guilty and have to prove your innocence. I'm happy for you, scared for you and emotional for you. I get it. Big hugs.
I am so happy for you!!!! This is my exact story. It's unbelievable that something that's so debilitating, related to head/brain/spine trauma, is not given a standard workup with differential diagnoses.
I've watched so many csf leak videos from Stanford, Mayo, Duke + EDS, POTS on YT and it needs to be taken seriously. I had head trauma from surgery and no one cares - yet I can barely stand or sit up, have sudden pots symptoms, dizziness, bouncing low-high head pressure, horrific postural headaches, whooshing pulsatile tinnitus, neckaches. THANK GOD YOU SPOKE UP AND GOT HELP!!
It is so crazy how many of us are floating around begging to be able to be upright again. So sad. I hope you get an evaluation soon 💜
Thank you!! I am going to try for Duke or Johns Hopkins nearby first! You inspire me. Thanks for raising much needed awareness!! They need to put you in a PSA campaign and instructional videos for new and old Drs!!
Wow, I'm so happy for you! Journey COULD be almost over! That's exciting to contemplate. I wouldn't worry about the dye. It's harmless and they have to be able to see WHERE exactly the leak is. I really hope this is the fix you've been praying for. You deserve to get your life back.
If you only take one thing away from Jen’s journey is never give up. Jen you are so inspirational and I am so pleased for you. ❤
I'm crying with you Jen! I am so happy you are finally getting the answers you need! I don't think anyone realizes how emotionally traumatizing medical gaslighting is until they experience it themselves. I have been dealing with it for two decades, and I know others have dealt with it their entire lives. Seeing you get validated gives me hope and the drive to continue advocating for myself. Thank you so much for being vulnerable and honest. You are giving your viewers comfort knowing we aren't crazy for feeling the way we do. You are letting us see that 'normal' is different for everyone and we can accept ourselves as we are right now, while continuing to work towards someting better. You have shown so many people the real harm in medical gaslighting and the emotional trauma it causes. You are you, all of you, and you have made my life better by being here. ❤❤❤
Finding a good doctor is how I found out I had cancer. Unfortunately it is already stage 4 and I am about to fight it. She also had me diagnosed with so many things that my other doctor completely dismissed. Good doctors are worth their weight in gold!
This is so wonderful, and I am SO happy for you! Crying in my living room. It's so wonderful to see someone in the chronic illness community being so validated. 💖
It gives me strength & hope!
Positional Allergies 😆 needs to be a SNL skit. (Standing up is closer to trees? Ceiling vent lint? No)
Right? And in a person with no history of allergies. Go figure 🙄 😒
Same 😄🤔🥴🙄😤 What are they teaching in med schools? Only help people if you can sell them meds?
I haven’t commented in quite a while but this deserves a comment. I am so happy for you Jen, prayers for your outcomes in the future! I hope this continues in a positive direction!
Jen. I have MS. These types of MRI using dye injected into my brain is yearly for me. This stops the lesions that is on my brain or spinal cord. Drink lots of water after to rind your body of the dye. This test can lead to a treatment plan. For me, MRIs can alert to possible inflammation and develop a new plan. Do the test my friend. Blessings of health and peace
Thank you Lisa, I think I must. I wonder with breastfeeding... 🤔 Bug hugs, you're a close friend by now 💜💜💜💜💜
I would lay off nursing day of and after. Better safe than sorry with little ones. Not nursing for those days should be fine. Milk production is stable and babies older.
How much longer do you expect to breast feed? Could you schedule the test to occur on a date that is after the natural end of this period, or would that create a problematic delay?
the dye for CT myelograms is not the same as for MRIs.
Congratulations, Jen! I’m so so incredibly happy for you. 💖💖💖
Thank you thank you thank you 🥰🥰🥰🥰
I’m so happy for you!!! Validation from doctors is huge
This is great news! I'm so glad that you finally got the attention of the right people! You have made such a titanic effort, poured so much energy into self-advocacy, and somehow maintained your momentum, and you are finally getting a hard-earned well-deserved response from the knowledgeable professionals that should have been reached years ago. Thank you for documenting all of this. I hope this leads to answers and remedies, and maybe even a change in the process so that fewer people in the future will have to take such extreme and persistent action to get what they need.
I am soooo glad they finally correctly diagnosed you.
Doctors, even specialists, can be so frustrating….
This is huge Jen, I'm so glad you're getting incontrovertible validation and a path forward. Good luck with whatever you decide!
Congratulations !!! I really understand how you feel I’m on the same they say is panic disorder I’ve been trying to get evaluated for POTS finally I got my tilt table test next week! Now praying they see something
Praying they can diagnose you with the right thing!
YAY!!! So happy for you! You fought so hard for yourself and now it’s paying off.
So glad progress is being made!!
You and me both! 😂 thank you!
My mother invented this tradition for our family. When we got good news we would hold hands in a circle and jump up and down yelling "Happy circle, happy circle."
This would be worthy of a "happy circle." You can do one in memory of my mom if you want..
Hope you finally get relief soon ❤. I started to have symptoms last August 2022 after a chiropractor adjustment. I had two prior brain surgeries in my childhood to remove a brain tumor. My local neurologist brushed it off as migraines as my MRI/EEG came back clean. Didn’t suspect CSF until I watched more videos here on RUclips. Once I got back from Disney, I started to complain more and more about my my symptoms of nausea, position headaches, ringing in ears, can hear my pulse, and losing alot of weight. He finally sent me to a headache specialist at a bigger hospital and the neurologist said right off the bat you are heading down the path of low spinal fluid from a CSF leak. My recent brain MRI and CT of my neck came back the same as previous scans but she still thinks there is a leak somewhere in my spine and will be getting a lumbar puncture in three weeks.
❤I feel your relief of your professionals having eventually decided to offer the patch & yet this is the fix for a csf leak at present . If I were being offered this , I would feel that it seems to be the only possible fix & there is no way of knowing if it will work the 1st time , if they may need to do a 2nd or 3rd patch . If I were to be offered this I would feel that I need to give it a try even though it feels like an enormous decision , yet it is debilitating to continue with these symptoms every day ( I would feel that I would have to try this because there does not appear to be anything else that could fix it☹️.
It is very scary to have to go through this procedure . I tried saying to one co sultans that I get a different type of headache when I lay flat - feels like too much pressure … they shut me up with sone comment that I can’t remember what if was now . Our voice being heard is all that we need . Best wishes if you decide to try the patch and all that it entails ❤
Thank you for weighing in! 💜 I do think I give it a try, and to your point, I think multiple patches is more likely than just one. Still worth it!
I'm so happy for you!!!
While for a different reason, I absolutely understand what it's like to be searching for a reason for what is wrong with you and the joy of figuring out what it is, even before the actual treatment.
I hope that they are able to fix this so that you no longer have to deal with a CSF leak. I also hope that if/when it is fixed you have a similar response as a I did to my valve replacement for a leak, which is more or less a domino effect of symptoms abating. I can't tell you how happy I was, and if not for all the drugs I was on at the time, I would probably have cried to wake up and not have a headache after the surgery.
No idea whether I have a leak or not (it's definitely possible, especially considering I sustained 14 concussions of varying severity in the space of just over 6 years, on top of having EDS, but don't know), but, because of watching your videos, every time I get hit with what has thus far ended up being just a rhinitis flare, I still always check it with my glucometer, just to make sure - normally when I get them, it registers as "low", but this last time it registered as an actual number (only 20-something, but still higher than all the previous times), so I will definitely be keeping an eye on that, and I know to do that thanks to you.
But I know what it's like to finally be believed and finally have a dr. who's willing to order the appropriate test - the sheer relief it brings, even if we were never shaken in our confidence in the first place about whether or not we were making the symptoms up (I had hard evidence, and my primary had my back the whole way, but she couldn't order the test herself, otherwise she would have done it immediately, so we had to get a specialist to do it, and the first 4 I saw flat out refused).
Looking forward to the update on whether or not you recommend the myofunctional therapist you were seeing, but you've got big decisions ahead of you right now, so the update can definitely wait until you're feeling up to it.
In so happy for you a your Journey. There can be so much gaslighting in the medical field. I can sadly absolutely relate. validation is so important. I pray that it be used all to God's glory!
I went for years knowing I had some level of Hydrocephalus. The doctors would say that my symptoms don't fit what they have been taught. The last one I went to told me that I was just depressed. I was depressed because I knew what he was going to say. I gave up and lived with my issues. I started having trouble walking and had to start using a cane. My wife talked to my Primary care doctor and he recommended a doctor that had diagnose the issue with his Mother. Wow what a difference! He was in his 60's and a Harvard Trained doctor. It took him a few minutes to determine the issue and scheduled Spinal Tap. My pressure ended up be 35 cm instead of the normal 10. They removed some of the CSF and the difference was huge. I danced back to the doctors office from the Hospital. He send me to a surgeon and we scheduled a VP Shunt to lower the pressure. It's been wonderful, but still had more issues than I want to discuss here but it's wonderful when you have a doctor who listens to you and figures out the issue!
My only issue now is he's retired. :-( Hopefully I won't need to see another doctor on this anytime soon. I'm 1 year from stage 3 cancer surgery to remove my left kidney. All went well but they only give me a 53% chance to living 5 years. So the Hydrocephalus isn't my main issue any longer.
Stay Healthy and live your life like it ends tomorrow.
Rick
Congrats (sorry at the same time though for what you have been going through) on your hopefully soon to come fix that hopefully reverses some of the problems that you have been dealing with with incompetent providers.
It's okay to cry about the realizations of the things that you have experienced that you shouldn't of had to go through.
Lots of emotions here. I'm so happy you're making progress! Seems like such a long drawn out process, but eventually, finally, headway! Like always, your videos post on significant days of my own journey down this path. I just completed my brain MRI with and without contrast, today. I'm anxiously awaiting my results, knowing the doctors this time are looking specifically for clues and signs of CSF leak. I can understand how you are feeling. Just the thought of actually knowing what your illness is, finally, after all this time, is a very intense feeling. I have often thought about how I would feel should I get any sort of confirmation on mine. Scary and glad at the same time.
If you don't do the CT myelogram, are you going to see if they'll do a blind blood patch? I feel like either way is going to be a little scary and risky, but just know that whatever you do, I'm here cheering for you to get better!
I don't subscribe to you, but I do check in on your channel every oh so often for updates. And all I can say is I'm teary eyed on my couch right now, so thankful and hopeful that your ( pun intended ) patch for everything might be coming soon. I can't wait to see more updates and hope they are all positive.
I am seriously tearing up along side you. Praise the Lord!!!
I HOPE some of the doctors who dismissed you were at that conference. Hopefully, that’ll learn ‘em. Please do whatever is best for you and your beautiful babies. I’m so glad you’re finally being taken care of.
SERIOUSLY!!! How easy is it to learn from watching videos from Dr Carroll, Schievink, Mayo Clinic, POTS & EDS differential diagnoses process. Science should be the process not gaslighting, guessing, or hunches...
I can be so angry with docters who think they know everything, but they dont. I struggle with pain for years. They said it was nothing and im to young to have rheumatism (28) and know finally they said they are going to test me, because i cant lift up my glass anymore.
I hope you have answers soon and that you will get your life back
The best is yet to come, you beautiful, amazing person Jen.
Hi. I just want to say that you are my new inspiration. I have been going through almost word for word what you have been through. I have EDS, dysautonomia and Gastroparesis. I have apparently had a migraine every day for the last 5 years. Until I discovered CSF leaks… I researched and googled and joined groups and am pretty sure I go from high pressure to low. I leak clear fluid out of one nostril as well as have a post nasal drip. I’ve had sinus surgeries and have osteophytes (spurs) on my cervical spine. I have reverse kyphosis (military neck to the point of my neck bending more in the other direction. I was a nurse before this horrid issue landed me bed ridden for a very long time. I have seen 3 different specialists and many different GP’s who look at me like I’m a hypochondriac. They tell me I have anxiety which is causing my migraines… the only times I feel anxious is when I have to visit a Dr. I had a magnificent Assoc Prof who straight away diagnosed csf leak just from listening to my symptoms and performed a non targeted blood patch which made me feel good for 2 days but then bam back on the ‘migraine train’…. I have only just come across your channel and I want to thank you. You have empowered me to advocate for myself and keep insisting for the tests to prove that something more is wrong than just the migraines . Sending you healing well wishes and hope that by the time I get to the end of your videos you have been treated and sealed. Big love from Australia ❤❤❤
I’m so excited for you! Sending you all the good vibes for Monday from this Aussie pharmacist!!!
With ups and downs in life, I think you on an UP.
Enjoy those moments of grace and cherish them. That's what keeps us going.
Just like with parenting. If you don't remember the moments of joy, your children can (and will) drive you mad.
True that. Hugs your way!
I hope that doctor was at that conference ("Honey!") Happy tears for you. I'm in the process of getting another evaluation from an "unremarkable" CT scan and that gives me hope. And YOU give hope to a lot of people with invisible illnesses. Cheers!
Go for it Jennifer! Have trust and hope!
I´m crying, so happy for you
Yay!!! Congrats, Jen!
I’ll keep my fingers crossed for you. Would your myelogram be a DSM? I’ve been lurk watching your videos because, although we would otherwise have nothing in common, our journeys have been very eerily similar. I have a myelogram coming up next week. It’s been 5 years for me now, and the impact has been, well, you are one of the few people who can empathize, and I don’t need to say more. I would say that we’re aware of the same caveats involved (the myelogram), I think the tap concern is worth risking. In this case, the surgeon knows precisely where the hole is if it doesn’t self heal, and they can fibrin glue it with extreme precision if it causes a leak.
Gosh. This was moving. Hope you get answers!! Unknown on DSM. I'm feeling it's worth the risk because the risk of NOT is also a risk!
Another thing we have in common is the tongue tie. An insignificant coincidence? Maybe not.
I've had one after the birth of my first child. Spinal block caused a leak. Pretty easy procedure, wasn't a big deal for that cause.
I’m so happy for you!!!
Jenn, I had a blood patch. When I had my first baby, the anesthesiologist punctured my dura…and that was the worst week of my life. They would have to sedate me because the pain was so bad. I remember very little of that time, bits and pieces because they thought I suffered a stroke, but my CSF was leaking. That is the worst migraine to live with, let alone if you have two children. The ONLY thing that saved my life was knowing my aunt was a nurse in the ER and knew to perform blood patches on individuals like that: the blood acts as a sealant/band-aide to the “bleeding” dura and heals itself that way. I don’t take blood transfusions, so the blood used was my own. I’m not sure how my life would have turned out had I not had a medical field worker as someone in my family. If it improves the quality of your life, I would highly consider that option.
Oh my gosh. Yes! Your support and encouragement and story were such a great thing to read this morning, thank you so much. Stay tuned, tomorrow I share the plan!
That's incredible !!! Wow congrats!
That’s absolutely insane it took this long, but I’m glad they finally move with your case. The doctor could’ve given you a bit more information than an email, but I’m glad that things are going out positive progressive direction. Are they able to recommend you treatment options if you decide not to do the milligram? I don’t blame you for wondering about the risks, I think it’s always important to consider those before agreeing to anything medical.
I had a pretty severe brain leak, it’s ridiculous how terrible drs can be! Who is your Dr? I had a wonderful Dr
This is amazing. I am so glad you found a great doctor. ❤
I'm so pleased for you. You totally need to email the proof to that dr and address it to Honey, i told you so.
Congratulations!
Thank you!!!!
I know how it feels , I suffer from chronic headaches due to 6 brain surgeries, brain hemorrhage , brain hernia , meningitis , hydrocephalus and intracranial shunt. While writing this i have had a horrible headache for 3 days non stop.
PD: you're beautiful
I have a CSF caused by scoliosis. It would involve a novel procedure to fix it. I keep getting doctors concerned and saying somethings wrong but it never goes anywhere from there. Hopefully I get a medical breakthrough you seem to be achieving as well.
amazing news!
Heck yeaaaaa!
I am so happy for you! Big hug, if you want!
Dye in your body is nothing compared to dealing with what you have. The Dr's doing the blood patch will explain patching the whole they create in order to fix you too. You got this far and I'm assuming your faith has been strengthened by all you have been through. I cried with you btw. Lol
I can't wait for the day I have that realization moment you just shared with us for myself. I know it's coming. Still wish you could find a way to let us know what Dr you saw. I swear I get leaks, I have hEDS and pots( but the pots comes hard when my ear leaks or nose or my back hurts where I had spinal taps) I have upright headaches near daily during those days. I'm so tired of Dr's. I won't give up. I have cci and aai and they want to fuse my occiput to c2 but 3 and 4 are too hypermobile. I just want to see a Dr who will give me a chance. I am so incredibly happy for you. Don't turn back because of fear. GOD has not given us a spirit of fear. He gave you the answers which you worked very hard for. Go for it!!! No fear!!!
Once you finally get properly treated, you should send a nice long letter, complete with copies of your diagnostic and treatment paperwork, to that "honey " of a doctor. Be sure to refer to her as Honey, in the final sentence.
This process sounds very familiar and I think maybe I have the same doctor as you! I am also in the same boat as far as approaching a CT myelogram which I've been trying to avoid at all costs. My first multilevel blood patch brought no improvements - my doctor gave me the choice to try another multilevel patch, or go for the myelogram to try to find the leak.
Currently I'm avoiding thinking about it. The myelogram terrifies me for all the same reasons! But now that I've been through a blood patch with not even any temporary improvement, I am hesitant to do another one without knowing the leak location... it was expensive, and it required people to take shifts helping take care of me and my kids for weeks on end. I don't know if I can do that to everyone again for something that may not work again. For this reason I'm considering jumping to the myelogram - but I'm so scared.
I really relate to this video so much. I am so glad you're being validated and these doctors are wanting to help you. I hate the weight of these big decisions and I am absolutely praying for you ❤
Dr. Cutrer, Mayo Clinic Rochester, MN, the best doctor ever. I have Hemiplegic Migraines, the rarest of migraines. I've had migraines since I was 11. I am now 62, and this type showed up 24 years ago. Please, if you can, go to see him.
I have sleep apnea too.
Recently I had a knee injury. Doctors in the hospital were not so gentle and made it even worse! Luckily I went for a private visit to the orthopedist, so I could finally have the necessary scans! Currently my knee is better :) Some doctors shouldnt have got their Jobs!
Hi there, you are not alone i had an injury in the head in 2010 and symptoms pop up the first symptoms was ear pain and tinnitus and bad bad headache i went to a lot of doctors and lots of MRI and they said your all good it is all in your head so i just believed them and go on with my life with all the headaches and ear pain and dizziness and stiff neck and shoulder, speed up to 2021 i had an eye issue and went to the doctor and ohh wait something is not right with your nerve eye and did an MRI and behold csf pressure was found.
I don’t know why it take 11 years to be diagnosed but I’m surely blaming incompetence doctors.
I hope you will be better soon and you can get all of this behind.
Hey you have the best of the best just imagine not having the best Doctors
Congratulations! If you want to know what a CT Mylogram is like & what a blood patch is like, I can share… but I’m soooo glad you are being believed!!! 🎉
YUP I'd love to know! Especially if I end up needing one!
Congrats Jen, I'm so happy for you (and your family), that after such a long journey you've been on, you finally seem to be on the path that was always meant to be!!!! The one that will offer you the opportunity to 'live your best life.' I will keep you in my prayers Jen and ask Jesus and our beautiful Holy Mother Mary to especially protect and bless every hand; every instrument used; every person that comes close to you in the operating theatre (if you choose to do it). I will pray that if doing it will make life better than you will feel to do it; alternatively if not - then you won't.. What an amazing person you are!!! I just subscribed tonight after binge watching a few vids and you have touched my heart. Trust in God Jen to guide you!! He truly is an amazing and Merciful God.. God bless🥰🙏
The medical community needs to get off their high horse. It hurts their egos too much when a patient has a better understanding of whats going on in their bodies. They need to be more humble instead of assuming every patient is an idiot compared to their "superior intellect"
I understand how scary the prospect of having a needle full of "dye" inserted into your spinal fluid seems. I also know you have had a lot of very negative experiences with doctors up to this point. But I hope you find the strength to go through with the testing and treatment your doctors are recommending.
You have fought so long and hard to finally be taken seriously. You are almost at the finish line.
If you stop now, what has it all been for? Validation is great and all but is that really enough for you?
Whatever you ultimately decide though, I will support your decision. You are the only one who has to live in your body. You are the only one who can decide if the potential rewards are worth the risks.
Good to have a doctor who likes people who knows whats wrong with them saves the guess work. If it wasnt safe they wouldnt do it. Buy the book parpare for surgery by peggy huddleston. Helps with a lot of issues and comes with CD. Highly recommend it
I've had 2 failed blood patches, waiting for the next instalment. Second one caused nerve damage. It's painful.
It is so exhausting not being taken seriously by these professionals .
I’m on a very similar journey and feel I’m not getting any closer to the professionals identifying why I have v similar symptoms : POTs EDS top of head daily pain ( positional related ) positive flat test … since summer 2016 … past counting the years now . Had full spine and head mri - we don’t SEE csf leak - but we could do an ALLERGY screening !!!
That was a yr ago but they ‘ forgot ‘ to write to do allergy screening & therefore didn’t do it.
Feels like CSF leak to me … but they tell me SOMETIMES we don’t know why you are having these daily migraines / positional headaches ( debilitating type ) need to be horizontal & need to always ‘ sit ‘ with legs horizontal & upper body reclined and have standing intolerance etc etc … i attend the so called ‘ best ‘ neurology hospital in England and they can’t join the dots … they don’t seem to take it seriously at all … they said 3 professionals were meant to look at my MRIs but only 2 did … it is so exhausting to ask them to please tell me why I have these symptoms each day since July 2016 … it feels like a waste of time attending apts and seeing more and more trainees guessing what my symptoms are … Because I also have ms they only want to focus on getting me to say yes to ms medication ( no cure - but lots of msg side effects ) I say no Thankyou . So they say lets do another mri and then you might say yes ! No I won’t . I choose to say no to the heavy duty medications . But I would like someone to tell me why I have CSF leak symptoms and can’t do what I could do BEFORE the csf leak symptoms began . Don’t get enough nose leak to give sample in a bottle. I feel they don’t take me seriously because csf leak is not their priority / or the right people didn’t look at my mri (?)
I had an apt this week and asked to SEE my
mri ( seeing as it’s my brain !) to me it looked like it was sagging (side view ) .. but the consultant ( trainee was not wanting me to look at my MRIs ☹️. I would like copies of my MRIs but I don’t think they will give me them . I’m in london uk , does anyone know if you can obtain copies of your own MRIs ? They did not offer any copies to me when I showed interest … they were only interested in me saying yes to ms medication
I don't know the UK rules but I'm a little infuriated for you. It shouldn't be hard to see your own images. BTW I have a video on my channel about the findings that are on my MRI, I detailed them so you can make sure your doctor at least knows to check for those specific things!
That's awful about how your being treated in the UK. I hope you can find another opinion there or maybe send your story & scans to a US Dr... I read about UK patients coming here for specialists.
hi this is tom im induring dailey head pressure and headaches also.I also get times of vision loss for 10 to 15 minutes.I had a mri done also and ruled out no tumor.Sometimes the headaches and pressure are unbearable and my neck is sore alot and tensed i get spacey and my temples swell when i eat.I also hear like something drainiig in the back of my head its weird genereally when im lying down
Oh my gosh I’m feeling your pain! Nobody listens to me either… doctors don’t think it’s csf leak
I’m happy for you
SOOOOO how'd it go?!!!!? I hope it went well!!!!!
The myelogram dye seems ok - I had contrast dye MRI. They have alternatives to lumbar puncture tests with dye if you suspect a cranial leak? Mine is likely cranial. Definitely go to Stanford, Mayo, Duke, Hopkins or Dr Hepworth - you deserve help. It's probably worth a risk with top experts doing a very tiny needle injection.
I'm sorry you're leaking too! I have had dye for MRI too, but I'm weirded out by it being straight to the brain because the BBB is usually kept so tight. I don't know of alternatives... but I'm 100% with you - this is one of the well-known docs and I'm so blessed to be able to be seen by him 🙌
@@MommingwithMigraine I hear you! The whole thing is scary making more punctures where one already exists!! 😩 The dye creeps me out too. I hope you can find out how to flush it out fast and avoid any weird reactions. Still, worth it!! I'm totally inspired you found a top doc!!! You're a fighter and help me stay strong.
🎉 THANK YOU AGAIN JEN!! And your supportive fam. I hope you can do a PSA & awareness campaign with your new drs!! They need to post a YT tutorial for every ENT dept, headache clinic, ER, etc. Thank you for all you have done for us and yourself. Hero status for me. Lifesaving info!! 🎉❤🎉
it sounds like the reason you were able to get this care was because of your youtube videos/tv appearance right? that's how these Drs found you? I'm so so happy for you, but that makes me sad for the rest of us. it shouldn't be so hard to get competent care /: regardless, thank goodness for you, I hope things are only up from here!
I'm thinking, sheesh, I guess it's time to make some sad 😂 horizontal videos or go on a reality show as a flat contestant. I'm so glad her story got attention, maybe we can use it as a template to show our Drs! I'm gonna make mine a BIG playlist!!
Let me know if you need a great editor 😂😂
@@MommingwithMigraine 😆😆 our medical system is nuts 🤣🤣💖💖🦓🦓 You're an awesome role model!!
sending love❤❤
I know your scared about the myelogram.
One of specialist you might be seeing had a quote I like of “we do a myelogram not to see if you have a leak, but to find where it is”. I may have miss quoted a little.
A CSF leak can be miserable. I know first hand.
True! It seems like the question has changed from "if" to "where" 😭💜 How are you now?
I am still on my journey. I just had a second blood patch. I’m hopeful that takes care of it. My first blood patch helped me a lot. In general, I lay down a lot to find relief.
I think you have a good chance to find relief. I have only been watching your channel recently. I watched one where you talked about fluid from your nose and I thought “I bet she has CSF pressure issue”.
I also saw your video on your brain MRI and the Bern criteria. I’m glad you have made it to the right place.
Spinal CSF leaks don't cause CSF to drain from your nose. They can cause irritation to cranial nerves and cause a runny nose. Is it more likely you have a cranial leak caused by your underlying high ICP? If so, that won't be addressed by a blood patch. Who is the leak specialist, and what did your imaging show?
Myelogram dye is just iodine-based and may make your head hurt temporarily, but is gone w/in 24 hours.
Yep, precisely. That is the million dollar question.
You’re where the rum went?
USUALLY 😂
❤❤❤❤❤❤❤
💜🥰💜🥰💜
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Woooo! 💜
It took me 19 years to get my records from the severe car accident I was in and my suspicions that I wasnt being told everything about the severity of my extensive injuries so I couldnt really understand how it was long term affecting me some 19 years after the fact..... I got the case notes and images yesterday... theres bleeding in my ears notated, broken bones I wasnt told about, and indications of spinal injury given that there are like 20 MRIs, 20 cat scans, and 40 xrays of my full spine and this like filing cabinet worth of documentation was kept from me by the legal custodians in a position of responsibility for my well being.... I have had seizures, fainting spells, noticed my self losing hearing, and even lost nearly all of my vision during those 19 years and now I am finally able to sift through the near endless notes and images and put together what actually happened and why i might still have pain and difficulty walking.... I dont remember having the severe spinal deformity I currectly have before the accident and I was told it was bad posture and high body weight.... (For context my spine has a sharp bend diagonally away from what would normally be a natural s curve so mine is more like
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shape.... I may have sustained a spinal injury. and in all the years of me asking questions I was told even the numbness in my legs was just me looking for attention or Durgs.
my gmail is
You are not a leak patient, you are a leak WARRIOR.