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Cribriform CSF Leak Not reachable via Endo?

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Old 07-24-2017, 09:50 AM   #1
Korkee
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Unhappy Cribriform CSF Leak Not reachable via Endo?

Hello I was diagnosed with a cribriform csf leak with a meningocele/encephalocele protruding into the ethmoid sinus. My doctor told me that he would not be able to reach the site of the cribriform defect via endoscopy.

So the other option is a frontal craniotomy and I obviously want a second opinion.

I'm going to schedule a visit with a neurologist as well as another ENT.

Has anyone else here had the same experience and if so how did you handle it, what ultimately happened?

This is my first time on any forum of this site, I'll check back ASAP for responses. Thank you in advance.
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Skeezyks (07-24-2017)
Old 07-24-2017, 07:00 PM   #2
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Hello Korkee: I'm sorry you are faced with this difficult situation. I cannot comment on it. Hopefully there will be other members here on NT who will. However I just wanted to leave a brief reply welcoming you to NeuroTalk. My best wishes to you.
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Korkee (07-25-2017)
Old 07-25-2017, 07:53 AM   #3
PamelaJune
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My mum had this option proposed at the end of 2014, after it was explained she said no thanks. I'm grateful to this day she didn't have it. She had in the lead up to the proposal 3 separate blood patches injected just into the dura in the hope they would find the leak and plug themselves, she also had a manipulative procedure to resolve her vertigo, as she had both the CSF leak and BPPV vertigo going on at the same time and was in hospital for 4 months having multitude of tests daily. Since discharge in February 2015, my Mum who just recently celebrated her 86th birthday has not looked back. The blind blood patches and the manipulation worked and she has not had another incident since.

Many of the tests identified established the leak was in the cranium above the nose, but where exactly they couldn't pinpoint, the fluid dripped continueosly from her nose and her headache was terrible. One morning I visited and they had cotton wool buds stuffed up her nose to catch / test after she had been given a nuclear die injection the day late before. Poor mum felt like after all the x-rays, ultrasounds, MRI's, CT scans, Cat scans you name it she had it. So much so that at one stage she began to worry she would become radioactive - I had to laugh at that one...

So please do look at all options, opening up the face, peeling it back off to expose the area under the brow / nose etc is not an easy recovery and the surgeons who talk about doing it are just so blasé. Well mums surgeon certainly was. All I could think was she is not a Guinea pig. She's my mum, a person in need of help but not investigative procedures just so you can make a name for yourself. I'm sorry if that sounds bitter / negative.

I also had csf leaks myself in 2012, they could not identify exactly where my leaks were or what had caused them (I had some pain relief injection procedure about 3 days before the headache started) my pain Mgt specialist to this day swears he didn't pierce te Dura but he does think the pressure following the procedure may have caused them to simultaneously appear. I had a massive grand mal seizure the night before they were due to do the blood patch. I fractured T3,4,5&6 and fractured ribs 8&9 when they did CPR. My Pain Ngt Specialist did 2 blind blood patches and the issue resolved itself. The headache disappeared almost as soon as I woke up following the procedure. Of course I was more concerned with the pain my back was offering up from the seizure the night before, I was in agony and asking to see my pain Mgt specialist, the nurse, I heard her talking to another nurse outside my room, she said all she wants is heaven opioids and I'm not giving them to her, she can go home. They discharged me and 2 weeks later found (after me begging my GP for X-rays) that I had sustained several fractures to my thoracic region and 2 of my ribs. They apologised but I've never been back to that facility and I'll never trust them again, they lied to my husband on the actual night stating I had suffered a panic attack and because I couldn't remember the last 3 hours I could say nothing. Luckily the woman in the bed next to me wrote it all down and gave me a letter and also sent a copy to the hospital ward clerk as she was horrified. My PM said they never contacted him at all, I understand that, it's not his fault. But anywY, re the CSF leak recovery - I had to be patient, I had to lie flat for 6 hours to begin with and then every 2 hours for the next 24 hours just get up to go to the toilet only. I followed his instructions to the letter and have never suffered again.

I'm so sorry you are in this situation of having to make a decision. Just remember our body produces litres and litres every hour of CSF fluid. You are not at risk of running out. Get a 2nd opinion please, it's a huge procedure and I'm told painful and a long time is spent in terms of recovery. Plus, there is also the fact they still may not be able to find the leak loacation....

I dont mean to upset you, just get more than one opinion, it's best you do so.


Quote:
Originally Posted by Korkee View Post
Hello I was diagnosed with a cribriform csf leak with a meningocele/encephalocele protruding into the ethmoid sinus. My doctor told me that he would not be able to reach the site of the cribriform defect via endoscopy.

So the other option is a frontal craniotomy and I obviously want a second opinion.

I'm going to schedule a visit with a neurologist as well as another ENT.

Has anyone else here had the same experience and if so how did you handle it, what ultimately happened?

This is my first time on any forum of this site, I'll check back ASAP for responses. Thank you in advance.
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Old 07-25-2017, 12:42 PM   #4
Korkee
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Quote:
Originally Posted by PamelaJune View Post
My mum had this option proposed at the end of 2014, after it was explained she said no thanks. I'm grateful to this day she didn't have it. She had in the lead up to the proposal 3 separate blood patches injected just into the dura in the hope they would find the leak and plug themselves, she also had a manipulative procedure to resolve her vertigo, as she had both the CSF leak and BPPV vertigo going on at the same time and was in hospital for 4 months having multitude of tests daily. Since discharge in February 2015, my Mum who just recently celebrated her 86th birthday has not looked back. The blind blood patches and the manipulation worked and she has not had another incident since.

Many of the tests identified established the leak was in the cranium above the nose, but where exactly they couldn't pinpoint, the fluid dripped continueosly from her nose and her headache was terrible. One morning I visited and they had cotton wool buds stuffed up her nose to catch / test after she had been given a nuclear die injection the day late before. Poor mum felt like after all the x-rays, ultrasounds, MRI's, CT scans, Cat scans you name it she had it. So much so that at one stage she began to worry she would become radioactive - I had to laugh at that one...

So please do look at all options, opening up the face, peeling it back off to expose the area under the brow / nose etc is not an easy recovery and the surgeons who talk about doing it are just so blasé. Well mums surgeon certainly was. All I could think was she is not a Guinea pig. She's my mum, a person in need of help but not investigative procedures just so you can make a name for yourself. I'm sorry if that sounds bitter / negative.

I also had csf leaks myself in 2012, they could not identify exactly where my leaks were or what had caused them (I had some pain relief injection procedure about 3 days before the headache started) my pain Mgt specialist to this day swears he didn't pierce te Dura but he does think the pressure following the procedure may have caused them to simultaneously appear. I had a massive grand mal seizure the night before they were due to do the blood patch. I fractured T3,4,5&6 and fractured ribs 8&9 when they did CPR. My Pain Ngt Specialist did 2 blind blood patches and the issue resolved itself. The headache disappeared almost as soon as I woke up following the procedure. Of course I was more concerned with the pain my back was offering up from the seizure the night before, I was in agony and asking to see my pain Mgt specialist, the nurse, I heard her talking to another nurse outside my room, she said all she wants is heaven opioids and I'm not giving them to her, she can go home. They discharged me and 2 weeks later found (after me begging my GP for X-rays) that I had sustained several fractures to my thoracic region and 2 of my ribs. They apologised but I've never been back to that facility and I'll never trust them again, they lied to my husband on the actual night stating I had suffered a panic attack and because I couldn't remember the last 3 hours I could say nothing. Luckily the woman in the bed next to me wrote it all down and gave me a letter and also sent a copy to the hospital ward clerk as she was horrified. My PM said they never contacted him at all, I understand that, it's not his fault. But anywY, re the CSF leak recovery - I had to be patient, I had to lie flat for 6 hours to begin with and then every 2 hours for the next 24 hours just get up to go to the toilet only. I followed his instructions to the letter and have never suffered again.

I'm so sorry you are in this situation of having to make a decision. Just remember our body produces litres and litres every hour of CSF fluid. You are not at risk of running out. Get a 2nd opinion please, it's a huge procedure and I'm told painful and a long time is spent in terms of recovery. Plus, there is also the fact they still may not be able to find the leak loacation....

I dont mean to upset you, just get more than one opinion, it's best you do so.
Thank you for your input, the location of my leak is not in question as even I was able to easily identify the defect on my CT scan and MRI before I saw the doctor. The section of brain/meningeal tissue that is poking through the hole is about the size of a couple raisins.

I understand that having this tissue poking through is a threat to my health via meningitis or abscess. The leak is very tolerable since it mostly drains backwards as post nasal drip and is also very occasional.

I am hoping to find someone who can repair this less invasively through endoscopy (although my doctor seems to think it couldn't be reached by this method). Yes having my forehead removed for an inconvenience and minor headaches seems like a big leap.

Thank you again for your input.
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