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 Mom wants to know

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PostSubject: Mom wants to know   Thu Jan 12, 2012 5:04 pm

My daughter has chronic IH..she doesn't want another spinal tap. What happens if she doesn't get one?

Is blindness a sure thing. Whatever happens, it can't be good.
Neither does she have the $5,000 deductible for her insurance for all the meds, tests, copays...neither do I. Is there a financial resource
she is eligible for somewhere in this country? Are there clinical trials somewhere? Any help at all will be appreciated. She is in pain and suffering. Help. Pat
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PostSubject: Re: Mom wants to know   Thu Jan 12, 2012 5:21 pm

Hi Pat, if your daughter's pressure is high and it is causing headache, and visual problems as well as the other symptoms, then it is in her best interest to have the necessary spinal tap to relieve the pressure, as yes, left untreated it can cause her to go blind. I know they aren't pleasant but in the long run an LP is a short discomfort compared to either temporary or permanent vision loss.

As someone who is partially sighted through IIH, I cann't stress enough the importance of doing everything you can to keep your vision.

As for help with medical costs, here is the link to our information on Help with the cost of medication resources (USA) and a link to Advocacy for Patients with Chronic Illness, Inc which I hope will be a help to your daughter.

Let us know how you both get on and if there is anything else.

Heidi hug
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PostSubject: Re: Mom wants to know   Fri Jan 13, 2012 1:20 am

Hi Pat! So sorry to hear your daughter's struggling. Heidi addressed financial resources, but I wanted to make sure you were aware there are some things you can do to improve her LP experience. First, make sure she drinks plenty of fluids the day before her procedure. You can request anti-anxiety meds prior to the tap to help her relax.. remind her to breathe & focus on keeping her muscles relaxed. Also, make sure you request no students or residents perform the procedure. It's not a pleasant experience, but those things can help. Following the tap make sure she lays flat & drinks plenty of fluids. Hot & cold packs can also help with swelling & discomfort.

Unfortunately, there aren't a lot of options for relieving pressure, but it's an absolute must in order to find relief & preserve vision..at least until they can find the right med or shunt option.

Good luck & keep us posted!
Take care,
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