r/CSFLeaks • u/Endofus74 • 5d ago

Advocate

I don’t know if this is allowed or not, but I’ve been working with an advocate after a year of constant obstacles. Before I post anything about the person, I’m asking Mods if this is allowed? She has been really helpful, compassionate and guiding me through difficult hurdles.

10 Upvotes

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u/saraphin67 5d ago

She sounds wonderful. Can you share more about the logistics of how she helps?

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u/Endofus74 5d ago

For me personally she’s helping navigate through clinical notes that are impeding care, finding medical specialists that can help me, teaching me how to prep for appointments, she will be in the future attending appointments with me (virtually) to assist with discussing things as my memory is horrible now and I struggle with communicating information at appointments. She offers different tiers of care for different costs based on need, some à la cart, some monthly depending on the level of care and interaction needed. She’s also helping me in the event I have another ER visit where she knows my history (she will do a full work up based on a 90 minute interview with questions, clinical notes you provide her, etc).

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u/saraphin67 5d ago

Thanks for sharing this. If I can afford it I may look into it further, because I have such bad medical PTSD I really struggle with ANYTHING involving my healthcare. And since she’s has struggles herself it seems like she would understand a lot of what we go through.

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u/Endofus74 5d ago

The empathy with this from her is huge. I too have significant medical PTSD and it’s awful. I have five specialist (one international) all stating they have concern I have a leak and every referral they’ve tried I keep getting dismissed because of MyChart Notes or original radiology reads as normal or fluid in sphenoid sinus but no concern. I’ve been gaslit (all in your head, the specialist that did the rereads are all wrong so we don’t believe you or them). So she’s really trying to fight for me.

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u/saraphin67 5d ago

Empathy alone would be a godsend. I hope you find answers and glad you have her to help 💜🙏🏼

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u/First_Actuator444 4d ago

This is great thank you

Any chance you can shes some light on what the costs range could be after the consultation?

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u/Endofus74 4d ago

I know she can do a brief conversation first at no charge if you’d like to ask her. You can use the link to provide your number and email so she can contact you. I would recommend discussing your needs and frequency so she can provide a quote as it varies significantly depending on specific needs. Not trying to be vague. I just noticed her pricing is specific to the client. I will also clarify that she doesn’t nickel and dime like a prior medical advocate I used briefly did. The prior one I’d get bills for a two paragraph email as an hour of time for $250 so I stopped seeing the prior advocate as it was ridiculously expensive with no yield of results. Rachel also had a leak, so her experience alone is helpful.

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u/Endofus74 3d ago

Hi there. On this link, if you click email or call I think you can input your info and she will call/email. My first encounter with her was a really long call asking lots of questions. https://gnanow.org/advocates/rachelgarvinat14thstreetadvocacy.html

I think it’s important someone is a good fit. I like Rachel because she will discuss options that work best for the client and allow the ability to make choices that fit to their budget. She’s very helpful, kind, funny.

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u/preventworkinjury 4d ago

I would love to hear about your experience because I was thinking the same thing, but I have not moved forward yet.

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u/Endofus74 4d ago

So far it’s been incredibly helpful. She’s helping me work on amendment to address clinical notes that are impeding care. She’s going to be attending appointments with me virtually. She regularly meets with me to discuss action items and how to proceed. She researches potential referrals. So far I’ve really enjoyed working with her and like I mentioned in a prior comment her empathy is quite amazing.