CSF Leak

[weeleighluigi]

Originally Posted by disney332

Sending dibb hugs... they are in short supply at the mo.

Take care

Disney332

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That's very sweet of you. Thank you

[weeleighluigi]

Originally Posted by storm

Past life i trained offshore medical staff. CSF leaks were always part of the course, cause,recognise,test & treatment. Still shocks me GP's don't test & pass it off as rhinitis. Hope you don't have to wait to long for treatment.

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My Neuro did an MRI thinking I had positional headaches (caused by low CSF pressure, in turn, normally caused by a leak). My MRI was normal, it wasn't until he asked me to tell him all my symptoms again... I could hear him thinking... He asked me.."does your nose run?" I initially thought to myself "what kind of daft a*£e question is that" 😂😂... But my truthful answer was Yes! And he had me explain to him when it runs. I could HEAR the light bulb moment in his head! He explained to me that my low pressure headaches will be secondary to the CSF Rhinorrhea.

If he has solved the riddle of my awful headaches and symptoms for the past 3 years... I owe the guy a drink! 😂😂😂

[DonnaD]

Originally Posted by weeleighluigi

Oh my goodness, I feel his pain! I am 3 years in to this!
My doctors couldn't figure out what my issue was, i must have an attendance list like that filing cabinet from Bruce Almighty! I have been wrongly diagnosed with vestibular migraines and a Functional Neurological Disorder in the past. I have just sent my tube of fluid off for analysis on my neurologists direction. I am hoping they have found the answer.

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Your story is making me very curious. My daughter has Functional Neurological Disorder. It does seem like the correct diagnosis for her due to varying symptoms over the last 4 years including non epileptic seizures, paralysis, vision problems and unexplained hearing loss.

However she also has a massive problem with fluid in her ears (despite grommets) and a constant need to blow her nose despite the tissues being quite dry. She doesn't have a true streaming nose like a cold. I was thinking nasal polyps but as her problems followed a head injury a wonder if a CSF leak is possible.

Do you know if it is possible to have this without headaches being a problem? I had a failed epidural that caused a dural tap years ago and that caused enormouse headaches every time I stood up.

[tracy99]

Have they said how they are going to fix it for you.
Tracy x

[weeleighluigi]

Originally Posted by DonnaD

Your story is making me very curious. My daughter has Functional Neurological Disorder. It does seem like the correct diagnosis for her due to varying symptoms over the last 4 years including non epileptic seizures, paralysis, vision problems and unexplained hearing loss.

However she also has a massive problem with fluid in her ears (despite grommets) and a constant need to blow her nose despite the tissues being quite dry. She doesn't have a true streaming nose like a cold. I was thinking nasal polyps but as her problems followed a head injury a wonder if a CSF leak is possible. I feel like the headaches are a garunteed symptom.

Do you know if it is possible to have this without headaches being a problem? I had a failed epidural that caused a dural tap years ago and that caused enormouse headaches every time I stood up.

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I am no expert but the headaches that you experienced when you had your epidural, would be low pressure headaches. And they would have been caused by a CSF leak. I imagine you were put on strict bed rest and told to have lots of fluids and caffeine? Maybe a blood patch?

CSF can leak from eyes, ears or nose, but can also leak from spinal areas like your one. I think quite an important thing would be that it's only 1 side it leaks from. As much as I have read (my Neuro actually told me to Google it, I did but I also still have Uni credentials so i also read medical journals and studies) as far as I can work out, it would only be one side that leaks. I can't figure out though if it can be ear and nose on one side.

Maybe you could bring it up with your daughters doctor? It was actually my physio that flagged that she didn't think I had FND. My doctor then agreed.

[weeleighluigi]

Originally Posted by tracy99

Have they said how they are going to fix it for you.
Tracy x

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They have to find the leak first, but my Neuro says it involves going up through the nose, repair the hole in the dura (?) The membrane around my brain and repairing the hole the fluid is coming down through? I'm not sure on the exact details, I was too shocked about his revelation to be listening properly! 😂

[tracy99]

Fingers crossed they manage to repair the leak soon and they don’t leave you too much longer, now you seem to have the correct diagnosis and you can start to look forward to travelling again.
Good luck
Tracy x

[DonnaD]

Originally Posted by weeleighluigi

I am no expert but the headaches that you experienced when you had your epidural, would be low pressure headaches. And they would have been caused by a CSF leak. I imagine you were put on strict bed rest and told to have lots of fluids and caffeine? Maybe a blood patch?

CSF can leak from eyes, ears or nose, but can also leak from spinal areas like your one. I think quite an important thing would be that it's only 1 side it leaks from. As much as I have read (my Neuro actually told me to Google it, I did but I also still have Uni credentials so i also read medical journals and studies) as far as I can work out, it would only be one side that leaks. I can't figure out though if it can be ear and nose on one side.

Maybe you could bring it up with your daughters doctor? It was actually my physio that flagged that she didn't think I had FND. My doctor then agreed.

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Yes, you are right about mine. I was on an IV and everytime it ran out I got a headache. I spent a few days horizontal. Luckily I was in a side room in an NHS hospital with it's own toilet as I had to bend at the waist to keep my head horizontal when I got up. It was abit of a saga and I ended up with 2 blood patches before it healed. It was a trainee anesthetist that caused it. Luckily when I was pregnant a senior consultant assured me he wouldn't let anyone else near me for an epidural. I would have ended up with a C Section otherwise.

I spoke to my daughter tonight. CSF could possibly explain her ear problem and I will speak to her ENT next week. Her nose sounds more like polyps as she said it isn't thin fluid but a feeling of her nose being blocked and too small.

Good luck with sorting your leak out. My pain was completely gone within a few days of the 2nd blood patch.

I am so pleased for you that you don't have FND. It is absolutely horrific at times and many people with it are severely mistreated by the medical profession. My daughter has been mostly lucky in that respect but it really limits her life.

[weeleighluigi]

Originally Posted by DonnaD

Yes, you are right about mine. I was on an IV and everytime it ran out I got a headache. I spent a few days horizontal. Luckily I was in a side room in an NHS hospital with it's own toilet as I had to bend at the waist to keep my head horizontal when I got up. It was abit of a saga and I ended up with 2 blood patches before it healed. It was a trainee anesthetist that caused it. Luckily when I was pregnant a senior consultant assured me he wouldn't let anyone else near me for an epidural. I would have ended up with a C Section otherwise.

I spoke to my daughter tonight. CSF could possibly explain her ear problem and I will speak to her ENT next week. Her nose sounds more like polyps as she said it isn't thin fluid but a feeling of her nose being blocked and too small.

Good luck with sorting your leak out. My pain was completely gone within a few days of the 2nd blood patch.

I am so pleased for you that you don't have FND. It is absolutely horrific at times and many people with it are severely mistreated by the medical profession. My daughter has been mostly lucky in that respect but it really limits her life.

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I am glad she has good treatment and doctors around her!

I found it to be one of those things no one knew about or would understand, and no one would try to understand. There is definatly a "it's all in your head" attitude. When I started to get treated and asked about traumatic events in my past, I really started to question what was going on. Then you have non-medical people... who just can't get it, it's not their fault... it has such varying symptoms and because it's an "umbrella term" for a group of symptoms... it's often dismissed.

[weeleighluigi]

Originally Posted by tracy99

Fingers crossed they manage to repair the leak soon and they don’t leave you too much longer, now you seem to have the correct diagnosis and you can start to look forward to travelling again.
Good luck
Tracy x

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Thank you