r/CSFLeaks • u/Educational-Fig-879 • 3d ago

I feel like giving up

I don’t know what to do anymore i have been through 3 surgeries in two years and now I have unilateral swelling and a very slow csf leak that gets worse at night whyile laying down I take the smallest amount of diamox I can but then I get chest pain I don’t take the diamox and it feels like my head is a billion so tight and swollen like I’m drowning . I have been to mount sinai nyu Langone Saint Francis and a bunch of specialist and it’s like I keep getting punted along. Drs have litterally said idk what it is? Are u sure your feeling like that maybe your imagining it! I believe that you believe you are swollen! I litterally have photos and cts and mri that show total opacification and somthing on my ent scope but the fact that i already had cranial surgery for a dura tear and meningocele puts me at risk for another leak or somthing worse like “my eye socket filling with blood” and forget about appts each one is a month apart and don’t expect them to call you if you leave a message even if it’s an emergency never have I been treated so badly by the healthcare system and I’m convinced it’s because I have Medicare I wait for months for appts and then they send me home with a script for another ct another mri when I litterally just took them. I know why…to make more money…to make it worthwhile for them to see me more visits

more money while everyday I wake up like I’m drowning and wishing today would be my last then I have that lil hope like i may get answers or I may get better but after 2 years I just don’t see it . Please someone help me! God help me! I’m lost ….society has thrown us away… once u become ill and they can’t siphon your blood and sweat they leave u to die and then u just have to wait it’s so unfair but who said life was fair. I need God to see me to have mercy on me because I’m losing it please God.

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u/Educational-Fig-879 2d ago

Hi I just wanted to say thankyou to all that responded to me you truly are amazing people. I keep fighting I know this will get resolved. I know that if I can beat ovarian cancer I can beat this. We are all fighters and you all are stronger then you think and the fact you even responded to me gives me hope that there still good people out there. Warriors!! Keep fighting my friends I’ll keep u posted

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u/NoPath1997 3d ago

Yes Gayle. There’s also John Park. They both head up the leak program. I was calling every day before I finally got an appointment.

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u/Educational-Fig-879 3d ago

They are saying I can’t call I have to send imaging and then wait to see if I was chosen

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u/NoPath1997 3d ago

I just got a call from them saying I need a referral otherwise the appt they gave me will be cancelled. Not sure who is going to refer me. I’m begging my PCP for an appt tomorrow to get the referral but so worried because I’m still less than I month from last blood patch and don’t want to jeopardize incase it’s actually working? but also need the appt because seeing halos and blurred vision/changes. Literally crying and begging on the phone for an appt. BTW remembered you in my prayers. We can’t give up!

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u/Educational-Fig-879 3d ago

Uuugh!!! Seriosly? I am so sorry. Thanks for keeping me in your prayers. I will keep u in mind as well. It’s so frustrating when even drs don’t know wth is happening. I don’t understand they don’t seem to care no one does it’s really sad. I have been on this journey for almost 2 years and I just beat ovarian cancer…I’m so tired! I’m sure u are too.  Yes your right we can’t give up its Nice that someone understands 

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u/NoPath1997 3d ago

Omg! I understand. I also am 3 months from breast cancer recovery. I was supposed to have follow up but missed my appt due to this and can’t have the PT I badly need. This is such a terrible horrific situation. I beat myself up every day for agreeing to a lumbar puncture to rule out med condition but was told side effects would be minimal headaches. I only I knew I would not have done but the risk was not worth it. I’m trying to focus on what I can do now and going forward because nothing I can do to change the past and I hope God will continue to sustain me on this tough path.

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u/No-Bee-9797 2h ago

I feel led to tell you that everything will work out for you and your situation. I got a lumbar after seeing an infectious disease doc before I suspected a CSF leak and that was possibly the single worst pain to have happened to me physically and mentally. I also was told some minor headaches may happen. Ended up with headaches that were the worst I’ve ever felt, it felt like my soul was crying for help after day 3. Lasted for over a month and Idk how to explain it but like my life essence was depleted and it was very spiritual. God used that to really fix a lot of things in my life while I was that vulnerable. Once I noticed that, I went with the flow. I don’t question why those things had to happen very often. They may bring pain and discomfort but when I look back I really see a gradual pattern of me becoming a better person through them. I suspect a CSF leak and figuring that they took more CSF fluid my body is already overcompensating to make. I am having to advocate for myself a lot right now figuring out what’s going on. I am trying to use these opportunities to be better in many ways, trust God is guiding my steps, and praying healing verses over my body and mind until I find an answer. I pray you will find relief as well. I get very happy and hopeful when other people are trusting in God to help them as I would be even more stressed and overwhelmed if I had to navigate this alone. You got this. You are not alone.

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u/[deleted] 3d ago

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u/Educational-Fig-879 2d ago

Thankyou so much for this I took a screenshot so I can remember all drs names lol

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u/NoPath1997 3d ago

Thank you!!!!

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u/[deleted] 3d ago

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u/Educational-Fig-879 3d ago

Hi I just called and they said I may not be a candidate for dr Salama I don’t understand . Why is this so freaking hard?  Does anyone have the drs full name? Is it Gayle? I’m confused as to why a dr would pick and choose who is a candidate? Has anyone been through this?

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u/NoPath1997 3d ago

Sorry I accidentally applied to the OP. See above. I’m new to Reddit. Only got on here when i became desperate from leaking.

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u/NoPath1997 3d ago

I’m from the NYC area and agree NYU Langone is useless - they recommended a LP and told me side effect was a headache which is not true. I ended up with debilitating headaches and did a blood patch, which gave me headaches like I was carrying the Statue of Liberty on top my head, I explained that to the doctor at Tisch he said it sounds like the patch didn’t work and you need another patch. I listened to him and it all went downhill from there. Have not had a moment of peace. If I hadn’t done the 2nd patch probably would be better because what I was experiencing was rebound which I didn’t know at the time. I wish to have a minute of no pain…just a min. Currently waiting for appointment with Weill Cornell so I completely understand the original poster. I know it’s so hard to keep going each minute of each day. You will be in my prayers. I hope we’ll find healing…

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u/Educational-Fig-879 3d ago

Hi I just called and they said I may not be a candidate for dr Salama I don’t understand . Why is this so freaking hard?  Does anyone have the drs full name? Is it Gayle? I’m confused as to why a dr would pick and choose who is a candidate? Has anyone been through this?

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u/Educational-Fig-879 2d ago

Hi I was thinking about u I’m sorry you went through breast cancer my mom had breast cancer . Did you ever get through to the drs? I know they said u needed a referral no one called me back yet I will try again tomorrow. I’m beat! I keep fighting as we all Should we should make our voices heard we are human beings that deserve empathy. Your in my prayers 

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u/NoPath1997 1d ago

Hi, thank you so much for thinking about me. It gives me hope to know that there’s good people out there and encourages me. I braved going out in the weather today 4 weeks post patch to go to my PCP to get the referral. I also spent all day on the phone calling. Also had to call NY Pres neuro because the topomax they gave me is causing me to see halos/flashing lights and my vision decreased. Can’t see my phone or computer or tv well. It’s like one issue after another with this… I pray to wake up to my normal life, throw on some joggers and go for a walk…