Author Topic: Important questions you should ask your doctors..  (Read 5382 times)

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Offline x Shelly x

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Important questions you should ask your doctors..
« on: July 20, 2010, 11:58:39 PM »
Leading on from Celestias 2005 'You're life in their hands' post which Idaserafiina came across the other day  http://www.iihsupport.org/index.php?topic=733.0  We thought it would be a good idea to start a discussion about what questions people should be asking their doctors..

Quite often people go into surgery completely oblivious of the risks involved..  Not because they are ignorant and failed to ask questions but that they were simply not aware of what questions they should be asking and their doctors simply failed to notify them of all the risks.  Which is fine when everything goes to plan... But there are times when things do go wrong, that is when people start to question,, 'well why wasn't I told this could happen' etc etc..  The answer would quite often be 'Well, you didn't ask'..

The point is we shouldn't have to ask, it is our right that we are informed of all the risks but very rarely does it happen that way.. People need to be aware of ALL the risks involved and the only way we are going to acheive that is to ask ALL the right questions.

I guess what we want the outcome of this post to be is to decide what questions people should be asking their doctors/surgeons.  We could then put together a list of questions that people could print off and take to appointments to make sure they receive all the information they need in order to make an informed choice when being faced with surgery.

Shelly..x
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Offline gothicglitter

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Re: Important questions you should ask your doctors..
« Reply #1 on: July 21, 2010, 11:22:46 AM »
my questions  refer to my eyes after my recent appointment, i was just thinking about writing this down because my mind goes nuts when am with a neuro
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 safley 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 detrim 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 is the chances of it working?
17. How can i get the pain under control?
18. Will the lp shunt injure my back?

Offline Idaserafiina

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Re: Important questions you should ask your doctors..
« Reply #2 on: July 21, 2010, 03:06:39 PM »
Hi everyone - and especially thank you Shelly for posting this important question. I really hope that we can get as many important questions in here as possible so that we will be able to raise awareness.

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.

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.)

Everytime 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?

And always remember that the success prosentages are just that: prosentages. 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.

IS

« Last Edit: July 22, 2010, 07:56:51 AM by Idaserafiina »
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Offline scoobysnack9

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Re: Important questions you should ask your doctors..
« Reply #3 on: July 22, 2010, 02:25:32 PM »
the optic nerve fenestation i would be interested to as my neuro has mentioned it to me, but after reading on the internet i really wouldnt like it done just incase something went wrong.

Offline shazza

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Re: Important questions you should ask your doctors..
« Reply #4 on: April 17, 2012, 07:41:06 PM »
Thanks for this list of questions i am going to see my consultant the end of the month and have to decide which shunt to have a Lp one or a Vp one i wanted to write a list and didnot know where to start thankyou.
I am so confused to which one I should get to help me
any advice :bang
Sharon

Offline AMHep77

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Re: Important questions you should ask your doctors..
« Reply #5 on: January 28, 2014, 01:25:29 AM »
I did tons of research before surgery and got two neurologist opinions and four neurosurgeons opinions before deciding on a surgeon.  Here is what I learned:

Optic nerve fenestration is only effective if you haven't gotten to the point of headaches.
VP shunt is the option requiring the fewest revisions but isn't an option for everyone.
LP shunt can be done on either side, its generally whatever the surgeon prefers.
No doctors seem to know what that visual irregularities we get is...yet everyone on here seems to have it!
The VP shunt requires a certain amount of space...and depending how "smooshed" your brain is you may not have enough room (I didn't).

Now here are some non doctor stuff I figured out:

The valve is uncomfortable on the hip.  I now wear only dresses and have just been able to deal with stretchy pants.
Wearing heels makes me feel like my drain is gonna pop out of my tummy.
Lots of us seem to have sciatic issues after LP shunts...docs don't seem to know why and want to get lots of other tests done which show nothing.
Granny panties with a nice support panel really make things feel better after surgery...invest!
« Last Edit: January 28, 2014, 12:48:09 PM by AMHep77 »
Trying to keep on rolling :-)