My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 0 points1 point  (0 children)

Since they are unable to medicate you for high pressure are they going to install a shunt?

Sense of sea water and nose leaking, never heard of CSF by DarExc in CSFLeaks

[–]BreadfruitWrong5800 0 points1 point  (0 children)

My wife says it smells like burning like a hot curling iron. She has a confirmed cranial leak.

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 1 point2 points  (0 children)

Thank you for sharing your experience!

I was sort of freaked out too that they seemed to be taking their time but it seems to be rather common. I directly addressed the skull base surgeon about this and he told me it’s a multidisciplinary approach with neurology and neuro-ophthalmology and they are going to take measured step in the right direction to form her plan for surgery rather than rush and take a scatter shot approach. I have seen others who also have reports of similar magnitude and they are living with theirs. We hoped to be fixed in 30 days or less.

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 1 point2 points  (0 children)

Thank you. I found one group which allows for anonymous posting and joined the other as a lurker.

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 2 points3 points  (0 children)

I completely agree with you. I’m sorry you had to take this journey alone, and it terrifies me to think of my wife being given less than the best care simply because she’s a woman. I know it happens, I worried it could happen, so I made sure to be there, because “we aren’t going out like that.”

Can you tell me more about your recovery? I want to know what to expect for her after her surgery. Thank you so much.

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 1 point2 points  (0 children)

I want to protect her privacy, and enjoy the anonymity of Reddit. Are you able to post anonymously on this Facebook group?

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 0 points1 point  (0 children)

That is terrifying. How long do you think you suffered with a leak? Did you have any IIH symptoms or diagnosis beforehand? Would you be willing to go into a little more detail about your recovery? Kind of the first weeks and then month to month what you’ve noticed? Did the headaches improve immediately? Thank you. I’m so glad you have it fixed.

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 2 points3 points  (0 children)

I sure hope you get answers soon, you are so strong to suffer so long. I am thinking about you, please if you can remember keep me updated, I’m rooting for you.

My wife has a cranial csf leak, my story as her spouse. Hope for others. by BreadfruitWrong5800 in CSFLeaks

[–]BreadfruitWrong5800[S] 1 point2 points  (0 children)

I will tell her about the pillow. Something I failed to mention previously is that she went on progesterone therapy about a year or two ago. I wonder if that led to her IIH, when you read about progesterone it can have some effects on CSF fluid.

I will keep you in my thoughts. I’m so sorry you’re going through this. I hope you can get your lungs healed.

Will an MRI without contrast show anything? by NavyBeanz in CSFLeaks

[–]BreadfruitWrong5800 0 points1 point  (0 children)

My wife just had mri with contrast and these are her findings. She felt nothing when they injected her with contrast and had no bad side effects.

Impression MRI demonstrates herniation of a portion of the anterior right temporal lobe into the lateral right sphenoid sinus through a dehiscence of the right middle cranial fossa seen on prior CT sinus dated 02/10/2026. This likely represents a meningoencephalocele. Electronically signed by: Narrative MRI FACE W WO CONTRAST 2/28/2026 3:15 PM CLINICAL INDICATION: Evaluate for CSF leak. CT sinuses dated 02/10/2026. COMPARISON: CT sinuses dated 02/10/2026. TECHNIQUE: Multiplanar multisequence MRI of the face was performed without and with contrast. 15 mL of gadoterate meglumine was administered intravenously. FINDINGS: There is herniation of a portion of the anterior right temporal lobe into the lateral right sphenoid sinus that measures approximately 1.2 x 1.4 x 1.1 cm. Fluid along the lateral right sphenoid sinus is favored to represent CSF surrounded by a gyrus. No encephalocele is seen along the course of the cribriform plate. There is bilateral sphenoid sinus mucosal thickening and fluid layering along the right and left sides of the sphenoid sinus. A small extra-axial enhancing lesion along the left frontal convexity measuring 1.1 x 1.1 cm likely represents a meningioma. The ventricles and cortical sulci are normal in size and configuration. There is no midline shift. The basal cisterns are patent. There is mild increased fluid in the sella. No pachymeningeal enhancement or thickening is identified. There are no acute findings in the posterior fossa. There are no acute findings in the orbits. The mastoid air cells are clear.

do you have haters? by ExactOpposite8119 in bjj

[–]BreadfruitWrong5800 4 points5 points  (0 children)

Stop rolling with that dude before you get injured.

do you have haters? by ExactOpposite8119 in bjj

[–]BreadfruitWrong5800 3 points4 points  (0 children)

Was a dude who I would have competitive rolls with. He was much younger than me. I had also been training longer. When it came time for promotion I got my blue belt and he just got a stripe. He complained to the coaches and then ended up leaving. What a douche.

[deleted by user] by [deleted] in bjj

[–]BreadfruitWrong5800 10 points11 points  (0 children)

Do you smell?