CSF leak? Headache anyone?

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fredntan
fredntan Member Posts: 1,821
edited June 2021 in Stage IV/Metastatic Breast Cancer ONLY

I am in year 8 with MBC bone only. It seems this year is the year of the headache for me. I have been on my docs to see about this. They are slow.

The head pain started in January 2021 after I got the last of the moderna shot. I dont know if it's related?

It started as mild annoying pain when I bent over...there would be really bad needle like pain in my head if I bent over...no big deal...I just stopped bending over.

I mentioned it to my oncologist in February. I went to a ENT in March.

She did a CT of head..then a MRI of head...told me to see neurologist..

It was taking a long time to get in....so I mycharted him....he responded that this was out of his area...and for me to be refered to headache clinic...the wait to get in there was july...this was in March...

Fortunately I have a great pain doctor...I showed him the report from MRI...the MRI says I have a meningoencephalocele in my sphenoid sinus..the pain doc said....you need a neurosurgeon..

Finally got to see him last tuesday and yesterday...it is evident I have a cerebral spinal fluid leak somewhere. He showed me some cysts on my spinal MRI that could be causing this...they have scheduled me for a MRI, more scans, and a myelogram..argh

I was a interventional radiology nurse before all this mess.

So now I just lay in bed all day...pushing fluid, ...trying to increase my caffeine.

This is not quality living.

I am 54. I have had a lot of toxic chemos and meds to survive....but for what?

The last bone scan also showed atypical femur fracture to left thigh..I did a lot of xgeva. After a very long MRI to left hip and femur...the orthopedic said left thigh looks fine...be did not mention the 2 cm worth of necrosis to top of femur head. But I guess 2cm is small??

I am so sick of being a patient...my poor pup needs her own emotional support pup.

Thanks for letting me vent



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  • moth
    moth Member Posts: 4,800
    edited June 2021

    fredntan, wow, that is a long time to try to sort out the cause of the headaches, never mind actually treat.

    keep pushing those fluids & caffeine! Did neurosx say they could fix operatively if required or is it too soon to say?

    There are days where we just need mourn our gone lives. Like WTH, how did we find ourselves here??



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  • Partyoffive
    Partyoffive Member Posts: 188
    edited June 2021



    I’m so sorry it’s taken so long for you to get some answers and that you are not feeling good. I too have had a headache it’s going on 4 weeks now-my hemoglobin is at a 7 so I was put on iron about two weeks ago so far it hasn’t made much of a difference so we are moving onto an mri. I wish you the best of luck and know that having a constant headache is no fun. I hope they find something to help you feel better soon

    Kristin

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  • fredntan
    fredntan Member Posts: 1,821
    edited June 2021

    does your headache get worse when you get up? If so you might want to investigate low volume headache.....


    The brain gets grumpy if it doesn't float in its cerebral spinal fluid. Increasing fluids and laying down can help this kind of headache.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2021

    fredntan, I really hope this can be improved for you. I had CSF leakage after a lumbar puncture to rule out leptomeningeal disease/metastasis of my breast cancer, and that headache was brutal. It took a surprisingly long time for me to feel better from that procedure, actually. (That may have partly been because I do actually have cancer on my dura, actually.) Anyway, those kinds of headaches are truly awful. I hope the neurosurgeon has some suggestions.

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  • fredntan
    fredntan Member Posts: 1,821
    edited June 2021

    Argh

    I just got out of the hospital 2 days ago! The head pain got bad over a week ago.....I had my husband take me to the big UTSW hosp. This was sunday evening june 6th. It's all still a little fuzzy...but they did a MRI of the brain and a CT scan of the brain...I have never had a hospital do a MRI right then and there..

    The scans showed that I had gas or air up there in my head! It's called pneumocephalus.....I'm still trying to understand it....they admitted me to ICU . It took hours for me to get to my bed...they needed to do surgery....

    But since I was on blood thinners...we had to wait...they did a fess procedure....functional endoscopic sinus surgery....they went in through my nose to repair a defective sphenoid sinus. The sphenoid sinus is small and in middle of head...gas or air was escaping there allowing CSF fluid to leak. I was on stroke and seizure precautions..

    The ENT patched up the sinus...I had to be intubated for the surgery....I hate those tubes down my throat..my throat is just now feeling better...


    I still dont know why !

    That was awful

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2021

    fredntan, oh my goodness! I'm speechless that you just went through all that - I can't even imagine! They really don't know what caused that to happen? Incredible.

    How are you feeling now? Any better yet? I just hope you start feeling better soon, and that this problem has been fixed for good. It sounds like your doctors knew what to do. Thanks for updating us.

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  • fredntan
    fredntan Member Posts: 1,821
    edited June 2021

    I'm recovering...just tired....appetite down...I am on activity restrictions....cant bend over...or pick up anything heavy ..

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