I had my mri with contrast and they diagnosed a csf leak. I'm in hospital now waiting to be referred to the pain clinic where the road to trying to find its location will start. Your video was invaluable for giving me a realistic idea of what to expect and especially where I needed to push the Doctors, also telling them that I didn't want a lumber puncture because I couldn't spare the fluid. Bringing up the risk of meningitis seemed key in getting their attention. I had to fight with three separate Dr's for the help I needed. The consultants and Doctors I'm seeing now know exactly what's going on and I'm on the path to finding a solution. Thank you so much yet again. The NHS really is in a state at the moment but I feeled very blessed to be where I am. I may have commented alot, my memory has been effected as well as my hearing in my right ear. Wish me luck!
O' yes finally you're getting the help you need! I'm so glad you fought for yourself - although it's annoying that we have to any way. But good luck on the rest of your journey and keep us posted with as many comments as you like because I'm sure your story will help others.
Maya's mom here: Oh my good lord you poor girl! Bravery! My daughter has EDS also...andIdo not have it but I see how she suffers with similarities to yours..just moving around normally is a challenge-that I do mot have .I feel for her pain ever so much I feel for yours so much as well...blessings be upon you both and upon us all.
Thank you for sharing so bravely, my friend. This sounds so awful. I think about the worst pain episode I had (2 months straight untouchable, otherwise I screamed). And this sounds worse as everything is so up in the air, unpredictable and risky. I wish you all the best and sending hugs.
Your series of events recently were all so sudden and I'm very sure that would've been so scary to manage. I hope you have days of better movement and eventual recovery ahead. Hugs.
Just seeing you upright and talking gives me faith. I'm on day 10 of the horrific pain. Been to the Dr's twice, they think it's a viral illness that's dragging. For the first week lying down horizontally helped but its starting to hurt continuously now. How long do we just sit in agony? 39 days ?! I told my Dr i'd be back in a week if its not gone. This pain isn't normal.
O' yes please don't let it drag - do not let it get to where it got for me. The pain is horrendous and yes after the right treatment it will get better. Have you had a brain MRI done yet?
@@FootprintsNoBoundariesByShruti .Im still suffering, I went to A and E after calling 111 and they did a CT which was normal. No MRI. Then I was told to get another Dr's appointment for a referral to a neurologist. My Dr's appointment is tomorrow and I have no idea how I'll get there. I can only walk for 1 to 2 minutes at a time while bent completely double as my head as my spine and head MUST stay horizontal. I'm no longer sleeping at all. I had a text saying I'm referred to a neurologist but no date. Its horrific.
@@FootprintsNoBoundariesByShruti The Dr told me to go back to A a d E and demand help. Eventually after jumping through hoops I had my MRI and it was positive, showing the classic hallmarks of a csf leak. I was admitted and am waiting for the ONE person in the entire hospital who's trained to do an epidural blood patch. Its day 18 and I'm hopeful things will be sorted soon. I did have to fight the NHS every step of the way, bringing up the words 'csf leak' and 'possible meningitis' to be heard and get the attention I needed as they try to send you home every single encounter. Your video helped alot by giving me a realistic version of what I could expect. Thank you
Really sorry about the severe pain you had to go through 🥺 God bless you love! May you get well soon! More and more power to you! You're such a braveheart and a true warrior ❤️ May you be blessed with good health and all the happiness! Ever grateful to you for sharing your experience with us! Can I share a bit of my story? In 2012, a scooty hit me from behind and I fell down, after 2 days my head pain started and it became worse and worse with time and within one year the severity of pain became fixated like from the day my headache started until now I'm having 24/7 headaches non stop. I did go through brain MRI which came out to be normal hence doctor concluded it as migraine but my pain doesn't respond to any medicines. It's been almost 10 years now and I'm still in constant pain to the point where I cannot even do my daily chores, my career is at hault, alll I do is lie on bed. Recently got MRI of my cervical spine which showed loss of cervical lordosis and dessication with mild bulges at C3, C4, C5, C6 hence the doctor said that I might have cervicogenic headaches, the physiotherapist suggested me few exercises, did for 20 days with so much of difficulty but still no improvement and I stopped it as I couldn't persist due to this pain. My pain pattern is heaviness, burning, needling( which I also feel all over my body at times), neck and back pain, top of my head pains while pressing, with bearable vertigo and nausea (not to the point of getting admitted) in the morning and in the night it would be more like congestion type headaches which would feel better with hand massage, any physical activity like walking, dancing triples my pain and gives me too much of vertigo and dizziness. One weird thing about my pain is I feel little better for sometime after taking my bath at night, this doesn't work in the daytime though, my stress & anxiety triggers my pain a lot. My neurosurgeon once decided to test for CSF leak but then I stopped consulting him. All these years I have been in 24/7 pain but miraculously since 3 weeks my pain is reduced around 30-40% only at rest, if I do any physical activity it triggers my pain again, I'm still surprised about my pain reduction for a bit coz I don't know which thing reduced my pain. I have tried 100 of things for my pain but nothing worked till date. Do you think it could be possibly CSF leak and I should get tested for the same? (Just asking as per your experience) Due to this severe headaches, I got so stressed that I got diagnosed with auto immune disease of colon along with that having all the PCOD symptoms! I'm really very exhausted! I'm 21, dealing with this since I was 11. I'm also from Mumbai, can you please give me your neurologist/ neurosurgeon details so that I could visit him? It would be of great help to me☺️ Thank you so much!
Hi... I'm so sorry that I missed your comment. You haven't mentioned, so I'm assuming that you've not had a CT Mylogram? Some of the leading CSF Leak doctors say that an MRI may not always be able to identify the leak which is why a CT Mylogram is suggested. I see the neurologist at Kokilaben hospital - Dr Raut. It might be worth seeing him and asking him what he thinks about it being a CSF Leak especially since you say you feel better at rest. I really pray you get the treatment you need and feel better very soon. Good luck.
I can only imagine that this had to have been the Worst thing to ever happen to you. My MRI was thought to have shown an aneurysm but there was none. After the second MRI was done 😩, he thought I was suffering from Chiari Malformation but they confirmed I didn’t. The last thing he told me was that I could be suffering intracranial hypotension and that they need to see if there is a CSF leak. I thought my pain was going away but it’s back. Something tells me that I’m about to walk in your shoes. Sheer HORROR. I’m in BIG BIG BIG TROUBLE! All of this in the wake of a divorce. The pain is annoying and I wish it would just go away.
O' gosh - the timing can never be right for crappy stuff like this. Is the neuro going to do another investigation to see if they can locate the site of the leak?
@@FootprintsNoBoundariesByShruti if my pain keeps up. I had told him that I was improving. But later I felt a different kind of head pain and it comes when I’m nervous too. The Neuro wants me back in 6 months. But I may contact him again. I don’t know if I want to do an epidural BLP or if it will even save me (strict with blood use due to my beliefs). Naproxen holds the monster back for a time but I DONT regularly take NSAIDS. He’s just watching it for now. I can’t tell if he is 100 percent sure but the last MRI (😬😰) didn’t reveal a CSF a leak. But sometimes they can’t. Nobody is sure. But it’s legit because the pain has been here since May 2021 and it came in the wake of my wife being unfaithful and leaving. All of this was unexpected. The medicine Topamax did nothing for me too lol. My only prayer is that I wish it would just resolve and go away instead of being the big bad wolf. 🤣. I’m scared to go through what you went through tho. But if I do, I will brace myself.
@@darkwing7966 In the same boat. How are you? I was given Naproxen too which did help me sleep when I first got it, but not now. I am bedbound and can only walk for 1 to 2 minutes bent completely double as my head and spine MUST be horizontal. How are we supposed to get to appointments? It's been over 2 weeks since the initial headache. Edit: I now in hospital and its been diagnosed as a csf leak. Make sure to push and get help!
Hi... since my head pain is now different and we still suspect a leak, I recently got to understand that an MRI isn't the best way to find a leak. It's usually best done by injecting a dye in the CSF and then doing a CT imaging. Again, this too isn't 100% but supposedly better than the other options out there. There are quite a few good webinars out there which might be helpful to have a watch - I'll link here: 1. th-cam.com/video/EXPY9x2UuRA/w-d-xo.html 2. th-cam.com/video/nKk_B3UTJ_c/w-d-xo.html
![My Endometriosis Story | How I Was Diagnosed with Endometriosis [CC]](http://i.ytimg.com/vi/Cfs_XoWhMTA/mqdefault.jpg)
![[TH] 2024 PMGC League | Survival Stage วันที่ 1 | PUBG MOBILE Global Championship](http://i.ytimg.com/vi/FVFT-PFwU80/mqdefault.jpg)
I had my mri with contrast and they diagnosed a csf leak. I'm in hospital now waiting to be referred to the pain clinic where the road to trying to find its location will start. Your video was invaluable for giving me a realistic idea of what to expect and especially where I needed to push the Doctors, also telling them that I didn't want a lumber puncture because I couldn't spare the fluid. Bringing up the risk of meningitis seemed key in getting their attention. I had to fight with three separate Dr's for the help I needed. The consultants and Doctors I'm seeing now know exactly what's going on and I'm on the path to finding a solution. Thank you so much yet again. The NHS really is in a state at the moment but I feeled very blessed to be where I am. I may have commented alot, my memory has been effected as well as my hearing in my right ear. Wish me luck!
O' yes finally you're getting the help you need!
I'm so glad you fought for yourself - although it's annoying that we have to any way. But good luck on the rest of your journey and keep us posted with as many comments as you like because I'm sure your story will help others.
You've been through do much, Shruti. Thank you for sharing all this information. Who would have guessed EDS could lead to this!?
Thank you Katie. Yes it's surprising yet not surprising as to how much is connected back to the same issues.
Maya's mom here: Oh my good lord you poor girl! Bravery! My daughter has EDS also...andIdo not have it but I see how she suffers with similarities to yours..just moving around normally is a challenge-that I do mot have .I feel for her pain ever so much I feel for yours so much as well...blessings be upon you both and upon us all.
Thank you for sharing so bravely, my friend. This sounds so awful. I think about the worst pain episode I had (2 months straight untouchable, otherwise I screamed). And this sounds worse as everything is so up in the air, unpredictable and risky. I wish you all the best and sending hugs.
Your series of events recently were all so sudden and I'm very sure that would've been so scary to manage. I hope you have days of better movement and eventual recovery ahead. Hugs.
Just seeing you upright and talking gives me faith. I'm on day 10 of the horrific pain. Been to the Dr's twice, they think it's a viral illness that's dragging. For the first week lying down horizontally helped but its starting to hurt continuously now. How long do we just sit in agony? 39 days ?! I told my Dr i'd be back in a week if its not gone. This pain isn't normal.
O' yes please don't let it drag - do not let it get to where it got for me. The pain is horrendous and yes after the right treatment it will get better.
Have you had a brain MRI done yet?
@@FootprintsNoBoundariesByShruti .Im still suffering, I went to A and E after calling 111 and they did a CT which was normal. No MRI. Then I was told to get another Dr's appointment for a referral to a neurologist. My Dr's appointment is tomorrow and I have no idea how I'll get there. I can only walk for 1 to 2 minutes at a time while bent completely double as my head as my spine and head MUST stay horizontal. I'm no longer sleeping at all. I had a text saying I'm referred to a neurologist but no date. Its horrific.
@@FootprintsNoBoundariesByShruti The Dr told me to go back to A a d E and demand help. Eventually after jumping through hoops I had my MRI and it was positive, showing the classic hallmarks of a csf leak. I was admitted and am waiting for the ONE person in the entire hospital who's trained to do an epidural blood patch. Its day 18 and I'm hopeful things will be sorted soon. I did have to fight the NHS every step of the way, bringing up the words 'csf leak' and 'possible meningitis' to be heard and get the attention I needed as they try to send you home every single encounter. Your video helped alot by giving me a realistic version of what I could expect. Thank you
@@Serenity7250 wow I’m so happy for you!!!! I am in Texas and no one specializes in leaks so I’m waiting to see doctors in z at California
Really sorry about the severe pain you had to go through 🥺 God bless you love! May you get well soon! More and more power to you! You're such a braveheart and a true warrior ❤️ May you be blessed with good health and all the happiness! Ever grateful to you for sharing your experience with us! Can I share a bit of my story? In 2012, a scooty hit me from behind and I fell down, after 2 days my head pain started and it became worse and worse with time and within one year the severity of pain became fixated like from the day my headache started until now I'm having 24/7 headaches non stop. I did go through brain MRI which came out to be normal hence doctor concluded it as migraine but my pain doesn't respond to any medicines. It's been almost 10 years now and I'm still in constant pain to the point where I cannot even do my daily chores, my career is at hault, alll I do is lie on bed. Recently got MRI of my cervical spine which showed loss of cervical lordosis and dessication with mild bulges at C3, C4, C5, C6 hence the doctor said that I might have cervicogenic headaches, the physiotherapist suggested me few exercises, did for 20 days with so much of difficulty but still no improvement and I stopped it as I couldn't persist due to this pain. My pain pattern is heaviness, burning, needling( which I also feel all over my body at times), neck and back pain, top of my head pains while pressing, with bearable vertigo and nausea (not to the point of getting admitted) in the morning and in the night it would be more like congestion type headaches which would feel better with hand massage, any physical activity like walking, dancing triples my pain and gives me too much of vertigo and dizziness. One weird thing about my pain is I feel little better for sometime after taking my bath at night, this doesn't work in the daytime though, my stress & anxiety triggers my pain a lot. My neurosurgeon once decided to test for CSF leak but then I stopped consulting him. All these years I have been in 24/7 pain but miraculously since 3 weeks my pain is reduced around 30-40% only at rest, if I do any physical activity it triggers my pain again, I'm still surprised about my pain reduction for a bit coz I don't know which thing reduced my pain. I have tried 100 of things for my pain but nothing worked till date. Do you think it could be possibly CSF leak and I should get tested for the same? (Just asking as per your experience) Due to this severe headaches, I got so stressed that I got diagnosed with auto immune disease of colon along with that having all the PCOD symptoms! I'm really very exhausted! I'm 21, dealing with this since I was 11. I'm also from Mumbai, can you please give me your neurologist/ neurosurgeon details so that I could visit him? It would be of great help to me☺️ Thank you so much!
Hi... I'm so sorry that I missed your comment.
You haven't mentioned, so I'm assuming that you've not had a CT Mylogram? Some of the leading CSF Leak doctors say that an MRI may not always be able to identify the leak which is why a CT Mylogram is suggested.
I see the neurologist at Kokilaben hospital - Dr Raut. It might be worth seeing him and asking him what he thinks about it being a CSF Leak especially since you say you feel better at rest.
I really pray you get the treatment you need and feel better very soon.
Good luck.
I'm so sorry youve had so much pain and difficulty for so long. I hope you have gotten help and are doing better. I prayed for you. ❤
I can only imagine that this had to have been the Worst thing to ever happen to you. My MRI was thought to have shown an aneurysm but there was none. After the second MRI was done 😩, he thought I was suffering from Chiari Malformation but they confirmed I didn’t. The last thing he told me was that I could be suffering intracranial hypotension and that they need to see if there is a CSF leak. I thought my pain was going away but it’s back. Something tells me that I’m about to walk in your shoes. Sheer HORROR. I’m in BIG BIG BIG TROUBLE! All of this in the wake of a divorce. The pain is annoying and I wish it would just go away.
O' gosh - the timing can never be right for crappy stuff like this. Is the neuro going to do another investigation to see if they can locate the site of the leak?
@@FootprintsNoBoundariesByShruti if my pain keeps up. I had told him that I was improving. But later I felt a different kind of head pain and it comes when I’m nervous too. The Neuro wants me back in 6 months. But I may contact him again. I don’t know if I want to do an epidural BLP or if it will even save me (strict with blood use due to my beliefs). Naproxen holds the monster back for a time but I DONT regularly take NSAIDS. He’s just watching it for now. I can’t tell if he is 100 percent sure but the last MRI (😬😰) didn’t reveal a CSF a leak. But sometimes they can’t. Nobody is sure. But it’s legit because the pain has been here since May 2021 and it came in the wake of my wife being unfaithful and leaving. All of this was unexpected. The medicine Topamax did nothing for me too lol. My only prayer is that I wish it would just resolve and go away instead of being the big bad wolf. 🤣. I’m scared to go through what you went through tho. But if I do, I will brace myself.
@@darkwing7966 In the same boat. How are you? I was given Naproxen too which did help me sleep when I first got it, but not now. I am bedbound and can only walk for 1 to 2 minutes bent completely double as my head and spine MUST be horizontal. How are we supposed to get to appointments? It's been over 2 weeks since the initial headache. Edit: I now in hospital and its been diagnosed as a csf leak. Make sure to push and get help!
Hi... since my head pain is now different and we still suspect a leak, I recently got to understand that an MRI isn't the best way to find a leak. It's usually best done by injecting a dye in the CSF and then doing a CT imaging. Again, this too isn't 100% but supposedly better than the other options out there. There are quite a few good webinars out there which might be helpful to have a watch - I'll link here:
1. th-cam.com/video/EXPY9x2UuRA/w-d-xo.html
2. th-cam.com/video/nKk_B3UTJ_c/w-d-xo.html
How are you doing now?
You are a brave and beautiful girl! Lots of love from Yvanita from The Netherlands!
Thank you so much for sharing
Thank you for watching and dropping in a comment :)
But all of it must have costed huge amounts of money. Get well soon, shruti.
Yes it did but fortunately my medical insurance reimbursed it all. Phew! :)
@@FootprintsNoBoundariesByShruti good to hear that your employer gave you a really good insurance.
@flying the world I'm my employer :D ...It's private medical insurance which thankfully covered it.
@@FootprintsNoBoundariesByShruti hmmm.. Appreciate your approach
Need your guidance bedridden since last 2 years
Hi Rakesh, I'm really sorry to know that you are suffering like this. What guidance are you looking for?