My Unseen Illness - CSF Leak
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- Опубліковано 5 лип 2020
- Part 1 of my Unseen Illness video describing my experience with a cranial cerbrospinal fluid (CSF) Leak including symptoms, diagnosis, and surgery.
Part 2 coming soon which will be all about SCDS.
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#csf #csfleak #invisibleillness
I’m feeling your pain sweetie, I’m watching to see your journey.
Thank you I am going in next week finally after dealing with this and when you said meninges or dura mater I have a mild spinal cord injury at umbilical cord and this governs my dura mater so I will stay positive as this has literally scared the life out of me. Sending love and light to you .
Thank you dear one for sharing this story, it is my story too. The only difference is I haven’t had any surgery yet. Some of these docs are so frustrating. My first real painful unbearable headache began 2 weeks ago. Older and alone now, pretty scared. Going to look for part 2, these stories are my only comfort.d
I am so sorry you are going through this just know you are not alone and have faith you will be better and become the woman you once were.
I wish you the best, really. You deserve to live a normal life and I’m gonna pray for you so that is possible. Stay strong!!!!
I am so sorry you have been going through this, Jordan. Thank you for sharing your story. I will be praying for you.
Thank you so much!
God bless you thanks for sharing your testimony I collapse the other day. I’ve been having the same symptoms you’ve described I’m known for buying tissues all the time specially, since I had a hit concussion three years ago I’m so sorry you’ve had to go through this bless you❤
Thank you for sharing your story
I hope you feel better by now, I also have a CSF leak, the illness is called Spontaneus Intercranial Hypotension SIH. There is a really good video about it from a medical team from germany that only works on this SIH illness. For me, i'm soon on my 4th bloodpatch, the first one helped alot, the second did nothing, the third did a little bit, but since the leak is very hard to find, and the bloodpatch needs the spread to the leak there is need for multiple patches. You need hi-quality mri with contrast injected into the dura to find the leak, and you need a very good mri doctor to view the imagin to trace and find the leak. I'm still not heald, but I'm just about one year in since my diagnosis.
Thank you for sharing
I have had ear problems since I was a toddler. I am now 69. I have had the same craniotomy you described 4 times. All failed so I had obliteration of my left ear. And yes…still have the CSF leak. I’m so frustrated. Completely deaf now in my left ear and I’m scheduled for surgical implantation for bone conduction hearing implant at MEEI. I have the best surgeons, but so wish this leak would just go away! I have a genetic condition SSCD and my daughter has now been diagnosed with same. She is a successful architect and at this time no need for surgical treatment.
I’m going through hell right now going on 50 days with this horrific positional headaches. I’ve spent two weeks in Methodist hospital in Indianapolis they found a leak at T-10-11 they did a blood patch put too much blood I then had a rebound headache the patches failed I ended up in hospital again last Thursday I got a patch at C-7 and L-4 which made me worse. Doctors around me just do not have a clue and look at me like I’m faking or nuts. I have an appointment at Cleveland Hospital May 17th I pray that this Specialist will listen and help me. I feel like me life is over. I don’t live all I do is lay down that’s my relief. Doctors are not educated enough and people with this suffer so much. I’ve been fighting and speaking out it’s the only way I’ll be heard.
I'm sorry for all that you've been through. I also have SCDS and understand everything you have talked about in both your videos. I had surgery and am hopefully still just in the recovery process as I have a lot of symptoms happening still so very wary of it all. I also have really bad middle ear issues and that is not helping not to mention the anxiety and paranoia that comes with this. I'm not sure what is coming from where. This condition has been absolutely debilitating and isolating. I didn't think this would ever be my life. Thank you for sharing your story, I needed to hear it today as its been a rough couple days. I'm sorry you are suffering too but grateful to hear I'm not alone in this nightmare.
Thank you for your comment! I hope your recovery goes well and you find relief soon, i know how frustrating that can be. You’re definitely not alone!
I have SCDS also. It is nice to finally talk to people who can understand what I am going thru. I am sorry for everything you have been thru. It took a little over a year, and I can't even remember how many doctors I saw before they finally found out what was wrong with me. For a while, I thought everyone thought I was just imagining this stuff, and I was going crazy. I finally have a diagnosis. I've spent 3 years deciding about the surgery. So, I haven't taken this lightly. I met all the doctors who will be in surgery with me. This is a big deal. It's my brain they have to pick up. And I am very confident I've made the right decision. I have it on both sides. So they only will do 1 side at a time in case you lose your hearing in that ear. I've done the pros and cons of this a million times. But this has already taken 4 years of my life. I feel like I'm a prisoner in my own house. I always have dizzy spells. After them, I feel nauseous. Then I have to lay down for a bit. Repeat, repeat, repeat. I'm sick of that life. If I don't at least try to fix it, I'll never know if it could have been fixed. And if it doesn't work. We'll, at least I tried.
My surgery is set for August.
So, anyone out there that has semicircular canal dehiscence. I feel for you it is no fun. I hear my heartbeat. When I talk, I hear an echo. My hearing fluctuates , but I'm losing my hearing in one ear. How does that work.?
I really do feel for anyone who has this. My compassion goes out to you. And my prayers 🙏
Have you connected with Momming with Migraines? She believes she has a CSF leak and is currently trying to get a diagnosis. She also has the constant running nose and made a video about all of her symptoms
I have not, I haven't been on UA-cam or social media much in the past couple months because I have been so tired and dealing with more symptoms. Hope to update soon though and I will check her out
I have this and my doctor thinks im crazy when i tell him i can feel the fluid running in my head down my throat, out my eyes, and nose. It happened to me after i went to chiropractor and got an adjustment. Its hard to keep a job or do my job because any kind of straining triggers it and it makes me feel weak and woozy. I just fight through it and hope one day it heals but i cant stop working i have a wife and lots of kids and a student loan to pay. I wish there was some help for me and my doctor would take me serious. Even sitting or standing for long periods of time triggers it he thinks its nerves. I know its fluids. I feel it and taste it and see it.
I want to cry hearing you say all things things. After the leak happened and received no help from the er or Doctors i started experimenting on myself to see what was going on. I noticed lifting things triggered it. Then i noticed eating too much also triggered it so i said ok when there is too much pressure on my spine the leak in my head is triggered so if i ate less and didn't lift anything i was ok. But how can i live this way? I must lift things to work and i have to eat to get energy. My doctor has no idea what my problem is and i do but its obviously a CSF.
One thing that helps a little is wearing a tight hat on my head.
Oh wow that is extremely frustrating! I would definitely get a second opinion, look for a skull based ENT or neurotologist. If you are on Facebook, there are a few CSF support groups and they are really helpful for finding good resources, I think in one group there is even a doctor list where you can find doctors in your area. I can’t remember which group that was though, but if you go to groups and search CSF you should be able to find them and request to join. My symptoms also got worse after a chiropractor, which makes sense because that will increase the CSF flow. I hope you find some answers soon and a doctor who can help!!
I have had a migraine for almost 5 years following 2 concussions due to rear end collections. I literally feel water dripping out my ears at night and my pillow is wet. My partner literally squeezes my head super hard when its so bad my vision is going. I have liquid flowing down my throat out my ears nose and even eyes sometimes yet no one can find anything. Ive had 2 head MRIs.. suggestions? I am sure I have a CSF leak but no one believes me. I literally feel like I am going crazy. All of your stories makes me realize I am not alone. Thank you
@@shannaodell5781 i don't have the answer. I believe eating foods that trigger inflammation around the spine makes it worse. I believe that inflammation pushes against the dura which causes the fluid pressure to build up which causes the leak to flow more. I am no doctor. If i could i would lay down in bed for 1 month straight and eat a healthy inflammation free diet for all those days. I wouldn't twist stretch strain bend or reach for anything. I would drink only water for those days along with the inflammation free diet. I would also cit back to only 2 meals a day for 30 days. I believe this would really help. I want t to try this. I have tried the diet part that really helps but i have to cook and lift and twist and take care of my kids while my wife works. I get a lot better but then i always do something twisting lifting or bending that causes it to flow again. If you can lay in bed for 30 days and do all the things i said you may get a lot better. Laying in bed without holding a cellphone up over your face for 30 days i mean. Even that causes you to strain a bit.
The goal is to get as much pressure off of your spine and dura long enough so it can naturally heal itself.
One last thing. You also need to be stress free. Stress tenses up your body and that will also put pressure on your spinal fluid.
I am so sorry
Im so sorry to hear about this. I had a brain tumor removed and I wonder if i have CSF leak and dont know it. I have pressure in there and get dizzy and lightheaded at times
I’m pretty sure I have a CSF and I’m terrified! I can’t stand it getting any worse and find surgery very scary. I can’t help but wonder if surgery will make it worse like it did you. For years I’ve wondered what was wrong now I know and it’s very scary to me
So sorry Jordan
I went through the same thing but out my Right ear
Now I have another leak but on its my Left ear
how do you get diagnosed?
Agreed
hi Jordan...i have some idea, but i wondered how you are doing, so went to your channel...4+ surgeries, huh...
i have an "idiopathic' SIH, and have had some quite "high-level" diagnostics, with no leak found, stil crazy after 3+ years!
I guess i need to have a better look at your videos, before asking "how are you doing?"
Is it pretty much always a cfs leak when you leak water substance? Could water coming out be something else? Why does the whole happen in the first place?
Yeah, I’ve had air popping all day long. Are used to get headaches three times a week. Sometimes I’ll get them in my sleep and I’ll wake up with them sometimes or sleep them off and then get them at the end of the day. My headaches have gone away using sumatriptan, I was taking propanolol because of the anxiety but all they did was make mine muscles numb and tingly. The side of my face will get tingly and burning sensation with rage through it. It would stop me in my tracks. I get muscle cramps sometimes they last for like a month, I drink about a gallon of water today a little bit less sometimes 64 ounces I was just running a 5K last week. I went for a nice walk yesterday collapsed scraped up my name, my shoulder, my hand, I’ve had lack of vision in my left eye I have coat hanger pain 24 seven I have nerve pain in my neck the base of my skull to the point where touching things does weird things like feel like leather, but otherwise shouldn’t hurt. What’s the log at double vision the roof of my mouth seems to changed like there’s a bump in the bone separation my nose just started bleeding before I went to the ground yesterday I went to the ER. They did their run up check my heart they felt like it was OK for me to go because I didn’t have a stroke or a seizure and that’s what he said he said that I should get with the cardiologists I think the ER is where they start you out going through all the hoops They know that they can’t fix it. Only Jesus can really help in my situation is the best doctor around I don’t count on that getting better but I can count on things working for good together all around things. I want to get better in times of pain I accidentally get closer to God I had a massive headache and Cushon three years ago. It’s only my third one. This one was pad I was having shakes because my anxiety would just flare up out of nowhere like I couldn’t control it with my brain like this thing that happened yesterday I tried to calm down because I tried to calm down. I couldn’t breathe, and I couldn’t breathe. My heart started going, so I stopped and I got tunnel vision and I taste of blood in my mouth. My nose started dripping blood. The worst part is I feel like I’m being ignored by anything that could help me has actually been the opposite only thing I found the more helpful is church relationships not so much religion but I’m talking good quality relationships based in faith in Jesus Christ hope you enjoy the calm and I’m dropping it off. Bless your new journey. Peace be with you and your family.❤
HOW DID YOU FIND OUT, I'VE BEEN DOING THIS SAME FOR MANY YEAR taking Claritin D FOR OVER 10 year now at 80 yrs old neurologist Saya no to any further surgeries. I NEED HELP
In that time did you ever notice if your cfs was intermittent? I have times when I did not leak out of nose but mostly kept headache, low energy and ringing in my ears, occasionally balance issues. Leak always returns but it definitely has something to due with physical activity. I'm currently on 2 anti depressants.....just tired of it all.
so your right runny nose hasn't stopped yet? does it run when you lie flat?
Is it sticky or just water drops ?
Did they ever test your pituitary hormones to see how it’s being affected by the CFS leak? Other than fatigue, did you also have other pain symptoms?
I have headaches all day everyday and no one mentioned cfs mri and ct all clear
Have you seen a neurologist or ENT?
My nose started running every day after a turbinate removal in sept 2019 (conchotomy),
only left side clear thin liquid (little bit slimy/stretchy) comes out my nose during the whole day. It tastes sweet. When I lie flat on the bed or flat on my stomach it stops. It’s so annoying, i can’t lead a normal life.
I found some information on the net:
Thin-cut CT scans are used for detecting bony defects, while MRIs may help in the screening of encephalocele, hydrocephalus, or other pathologies. CT cisternography is used if no definite defect can be found based on CT alone.
i am going to request a ct+mri of my frontal sinus, sphenoid sinus, ethmoid sinus and cribriform plate and dura mater and olfactory fossa and the turbinates(concha) and fovea ethmoidal as well.
I think the thin slice CT scan is the best scan for it, at least from what I’ve seen and read from people in the CSF leak and SCDS support groups on Facebook. I hope you find answers and relief soon!
Sweet woman have you looked into Stanford they have aleak Institute as well. As in LA and Duke. My name is Lauren and I had a leak CSF leak for seven years originally from a general puncture from an iPad Air or hope this information. LA is just a hospital called Cedars Sinai and then the school is working on a CSF program as well. If you need any more help just text me back as I am trying to be an advocate to help others at least reach out and get proper information you need in your neurologist to refer you and I can see how we are hesitant.
They plan on fixing my septum as well and I have symtopms of a leak
I hope all goes well and you find some relief!
Hello, my name is Andrew. I'm a 19 year old college student. I have been battling daily headaches and muscle tension in my upper back/shoulders/traps/neck for over a year. I'm doing atlas orthogonal treatment right now. I have gotten maybe 4 adjustments and I haven't gotten any relief. Also I'm looking into the CSF Leak Treatment. If anyone has any ideas or input please let me know. Thank you so much.
High can you give your insta id
How are you now?
I had this and they did not cure me because it was not a constant leak
I have multiple sclerosis
I had this after a front top tooth dental work my nose wouldn’t stop running he gave me metrodazinole and it stopped I’ve recently had really blocked nose from mold and damp exposure it hurts my checks my gums so I did natures metrodazinole and that is payapa seeds which is anti microbial and I do have an infected broken tooth up top on tbe sane side as the running nostril
and my nose was running in left nostril 👃 clearing it all the back caused by a pathogen !! As tbe trigger!! Amebas in my case and they can set up home anywhere!! So I guess out of my lymph drainage so I think it probably due to infection and omebas and allergies to mold in my case it’s so clear now and that would make sence after eating because your ducts produce more saliva so I think it’s due to infection of your ducts and lymphatic system could be cause by an allergen or omebas in which case get tested could be hard to detect but ask your doctor for a round of metrodazinole !!! Could be from the nerves in your gums from your teeth that where infected antibacterial medicine will not kill them tbey only target bacteria metrodazinole is anti microbial omebas and waterborne like Garcia which you can get in lakes swimming pools water supply muddy pools of water if you have had any work done on your teeth these omebas from your teeth can get into your blood stream. Try it and hopefully that will help cured my brain fog too and tbe headaches . You may have an underlying upper tooth infection to consider too. I really hope this helps. If it’s come from tbe nose and upper gums it’s usually come from there originally!!!
"They" are dangerous people. They could have given you supplements that heal the membranes but then they wouldn't make any money on that. Hope you recover! (glutamine & omega 7 + collagen + vitamins)
It's really malpractice how many doctors overlooked this ....
Do you think covid test swabs made this worse?
There's been an increase in infections.
I believe covid nose swab and covid vaccines should be investigated.
Is blocked/stuffy nose also part of the symptoms?
I am wondering the same thing.
did you need surgery?
Do you ever have yellow fluid leaking out? I do...
Mine was always clear which indicated CSF. CSF is clear and watery. Yellow could be regular mucus or something else but I would ask your doctor if it’s concerning
Yes in some cases it's yellow and watery if you have recent problem absolute bed rest can solve it use antibiotics for any infection in brain
i m having. yellow fluid from my nose can anyone tell me is it csf or anything else ??
i m a bit nervous now ..
CSF is usually clear and watery, tastes salty or like metal
@@JordanJunco thanks.
Do you have EDS?
I do not, but I have seen a few others online that have it along with either CSF leak or SCDS
The hearing thing was so interesting cuz my sister have the same symptoms, but she has autism. The interesting part was that the "hearing everything" can be find in different illnesses and i never thought that
Anyway:)
I "suspect" myself of having these. I have the symptoms but i don't think that i have ths illness itself because the fluid that comes from my nose It's not that clear that i've seen on google like water, it's clear but a little sticky. Every single night when i lay in bed and every morning when i wake up my nose stars to run clear liquid. I don't have allergies and it happen for a year. I also don't afford to ask doctor so i wanted to ask you if the liquid that comes from your nose was clear like water. Cuz maybe i have non allergic rhinitis or something else idk. I also have a cyst on my brain but i was operated in 2006 and everything was ok after, like this situation with going to sleep and waking up with a running nose it's kinda new and idk what's going on. And i already had the rest of the symptoms but the cause are other mental health illnesses so i'm very confused about this liquid and very tired of it. Sorry for bothering you!
Allergy to sun?
Can they test for this in a emergency room?
Good question
From what I’ve seen it’s not commonly found in the ER, but with a specialist and specific imaging and tests
@@JordanJunco This is exactly what i think i have
Where do you live if you don't mind me asking?
I'm in Austin, Texas
@@JordanJunco have you heard of dr ian carrol he is an expert in csf leaks and he will actually listen to you the only draw back is that it may take up to a year to be seen by him. I have yet to call him for my leak as I dont have any money rn. Anyways I hope you get better and wish you the best.
@@animallover8779 I am in SA. Also suspect CSF leak. Fluid slowly discharge from left nose nostril (watery). MRI&CT done. Spent a fortune on specialists. Lost my balance. Headaches and dizzy. Have to ly down to get relieve. Plse keep in touch with your videos. Stay strong.
@@susannacoetser1197 there si a video of me leaking on my channel I don't know if you saw it.
@@animallover8779 Thx for answering. Yes I just read it. I also know about Dr Ian O'Connell but unfortunately being in SA it won't be possible for me to go and see him. I reached the end of the road. But plse let me know when you make a break through and keep in touch.
Agreed