Important Questions you should ask your doctors

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The General IIH Questions and Answers board is for posting general questions about IIH that don't fit into one of the other specific categories on the forum. If you're not sure where it goes, post it in here, and if a moderator feels it's more appropriate in another board. Below are some points to remember when posting on this board, and also some guidance on what not to post on this board and where it's more appropriate to put it.

General posting guidelines for the board:
  • please post only general IIH related questions in this board - specific questions about particular aspects of IIH should go on the relevant board in the "Discussions section of the site, i.e. 'Medical Treatments', 'Surgical Treatments', etc.
  • please remember that we're not doctors, and shouldn't be giving medical advice - please see the relevant sections in the forum's rules about medical advice and prescription medication. Sharing your experiences of what's worked for you and your IIH is fine, but you shouldn't be telling other members things like, "If you take X, Y and Z it will improve your symptoms" - there's more guidance on this in the forum rules.
  • please start a new thread for each of your questions, which will help other members who are searching for information on a specific subject and allow others to comment on your questions. If you're commenting on another member's post, please don't add in another question of your own to the discussion - start another thread for it.

What shouldn't be posted on this board:
  • news of your latest appointment, your progress following surgery, progress on a new medication etc. should not be posted on this board, but should be posted in the "Members' stories and updates" board
  • if it's a specific question about a particular treatment, please post it in the appropriate board within the "Treatment" section of the forum
  • Introductions should be posted on the "Introductions" board in the "Members' Area" of the forum
  • more general posts about how you're feeling related to IIH should go in the "Need Support?" section of the forum (registered members only in the 'Need Support?' board)
  • this area is for IIH related discussions only - general conversations, jokes etc. should go in the "Members' Area" - general conversations in either the "General Chat" board, or the "Members Lounge" (registered members only in the Members' Lounge)
...and of course as always, play nice and stick to the rules. ;)


This board is for general questions and answers relating to IIH only. Any other posts will be moved into the appropriate board by the forum staff.
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Posts: 157
Joined: Fri Feb 17, 2017 9:04 am

Important Questions you should ask your doctors

Post by iih » Fri Feb 24, 2017 8:39 pm

We asked forum members what questions they wish they had asked when attending appointments, they came up with the following:

1. How can I have more blind spots now the pap swelling is going down?
2. Why am I losing my vision when I stand/bend over/cough/ stretch/ sneeze?
3. Why do I get strips of lighting and flashing lights in my eyes?
4. Can I drive?
5. Will I have pap forever?
6. Am I always going to lose my vision and have visual problems?
7. Why have the dots in my eye all started to connect together?
8. Why are the dots gray some days and black others?
9. Can I live safely with "moderate" swelling/ is there still risk to my eye sight?
10. Will I have a headache forever?
11. What can I do to prevent the headaches?
12. What painkillers are safe to take and what dose?
13. How are you going to determine if I have high icp? and also can you do icp mointoring?
14. What other medication options are they?
15. Why didn't diamox work?
16. If I go ahead with the lp shunt what are the chances of it working?
17. How can I get the pain under control?
18. Will the lp shunt injure my back?
19. When facing an IIH related surgery I would want to know exactly how the procedure is done. I would want a detailed explanation on how it's done - what it is that the neurosurgeon actually does to you.
20. At each point of the surgery: what can go wrong? And has gone wrong with these type of surgeries in the past? (Doctor's are / and can be often reluctant to give you these facts, but don't give up. You need to hear those stories too as in you have the right to know (before it's too late) what are the possible risks involved.)
21. Every time when the doctor admits that there's a risk of something bad happening - make sure that you know how are they planning to fix it? What are the possible surgeries / procedures etc. that you might be facing if things don't go so smoothly? What measures have to be taken in order to make the situation better again?
22. And always remember that the success percentages are just that: percentages. If 98% of the time some surgery is successful, there is always that 2% who end up with less promising results. Make sure that you think with what (aches, pains, epilepsy, vision loss, impaired hearing etc.) you can live with in the future (after knowing the risks) - because there is life after that surgery. Then, when you are aware of the possible outcome, you can make an informed decision about the surgery.

Do you have a question not listed here? Please comment and tell us what it is.

Posts: 30
Joined: Mon Mar 20, 2017 10:29 am

Re: Important Questions you should ask your doctors

Post by Hannah01 » Mon Apr 10, 2017 1:26 pm

Thanks for the share due to early diagnostic anxiety and fear most of these important question are not being asked

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