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 Karen - Diagnosed April 2011

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ksefcovic05
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PostSubject: Karen - Diagnosed April 2011   Thu Jan 05, 2012 9:42 pm

Hello,

My name is Karen. I live in Ohio USA. I was diagnosed with IIH April 2011. I had been having headaches since 12/2010 and they were getting progressively worse. At the time of diagnosis my pressure was at 300% and almost lost my eye sight completely. I was put on a regiment of diamox 250mg three times a day. In October of 2011 I saw my neurologist and told him the symptoms were persistent and begged him for a solution. He referred me to my neuro surgeon. I November 2011 I went to see the surgeon and we scheduled the lp shunt surgery for 12/21/2011. I had the surgery woke up and the marching band in my ears were gone and my headaches were gone. On 12/24/2011 I woke up and I started experiencing low pressure headaches and I had a muffled right ear. Went to the ER and they did a ct scan and sent me home with Tylenol 3 for pain. :(

On 12/27/2011 I went back in to the hospital and stayed again this time for 9 days. During the time at the hospital they did one ct scan yet again, and two LPs, a visual field and was checked by a ear nose and throat doctor. All said I was fine. So on 1/3/2012 I was released from the hospital. :(

Today 1/5/2012 I went to another ENT for a second opinion they actually did a hearing test and it turns out I lost my hearing in my right middle ear forever, it not reversible. I am so depressed I feel like I am done. Not to mention that the reason for my IIH is because I was misdiagnosed by another doctor for a gastro problem that he thought I had and put on prednisone for 9 mos. :( I feel so lost and devastated and angry. PLz help.
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Wylee
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PostSubject: Re: Karen - Diagnosed April 2011   Fri Jan 06, 2012 6:40 am

Hello Karen. Welcome to the forum.
My goodness. What a trip you have had! But, I must tell you, I am confused. Your opening pressure should be in centimeters or milimeters of water. Not sure what the percentage means. Could you explain that for me please. Thx!
Prednisone is not ototoxic. It would not cause hearing loss. In fact, prednisone is often given as a treatment after an ototoxic drug has been discovered to be a problem. Ototoxic drugs are those that can cause permanent hearing loss.
"The most common ototoxic drugs include aminoglycoside antibiotics, loop diuretics, and some forms of chemotherapy."

So if you lost your hearing perhaps it may come back. What did they say caused the loss?

And I am at a loss for this new possible cause of IIH.

I am terribly sorry, but it sounds like everything is topsy turvy. I wonder about the team of docs you have treating you. Perhaps you can find a better, more knowledgeable group. IIH is so confusing all by itself without filling someone with so much crazy info. I would be angry too, Karen. Where in the world are you?
Can you get to the Columbus area? Hopefully medmisfit will be around soon and she can offer some suggestions as to where you may go for help. She lives in Ohio too.
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medmisfit
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PostSubject: Re: Karen - Diagnosed April 2011   Fri Jan 06, 2012 5:28 pm

Hi Karen welcome to the group!!

I'm so sorry you've had such a difficult time..of course you're angry and discouraged!! Like Wylee, I'm a little confused by your care and experiences.. do you have anyone coordinating your care? A primary care physician, neurologist, neurosurgeon, neuro-ophthalmologist..anyone that's been consistent and trustworthy?? If you do, I would start there. Talk to them about your questions and concerns..see if they can help you get things under control. There are also guides here that you can review that can help you talk to your neurosurgeon and physicians about IIH and treatments.

Unfortunately, IIH is difficult to properly diagnose and manage..even for professionals that are educated and understand the condition. I think the low pressure headaches following shunt placement are typical. I know I had seizures for a couple of days after my placement and they treated me w/ caffiene drips. It took some time, but I was able to leave after five days. I also know it depends on the type of shunt. I've had mine for over 10years, so it's not programmable..I've had two revisions to adjust flow. If you have a programmable shunt, it may just take some time to find the right setting..that would be a conversation to have w/ your neurosurgeon. You may also find more information regarding Secondary IIH and treatments at ihrfoundation.com.

I'm curious, were you released from the hospital because your conditions improved or because they couldn't find anything wrong? I think you'll find many IIH sufferers that have been ignored at times, so you have to keep pushing and trying people until you're heard. Do you have any family or friends that can support you through the process? The important thing is to stay strong and not get discouraged! There is help out there, so take some deep breaths and try to focus on the positives. I know it's easier said than done, but you have to take care of yourself first. I do also live in Ohio, so if you want to send me a private message I'd be glad to talk to you about possible resources in your area..the important thing is to never give up! We'll support you here as best we can.

hug
Take care,
Julie
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Heidi
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PostSubject: Re: Karen - Diagnosed April 2011   Fri Jan 06, 2012 5:59 pm

Welcome to the group Karen. You've had quite a rough ride and it doesn't sound like your Doctors have followed through on their duty of care with you at all! I too like Wylee am very confused about your opening pressure being done by percentage instead of cms or mms, which makes me wonder how knowledgeable your Doctor is on IIH, because he seems to have given you very little information.
I would ask if it is sensorineural hearing loss which is documented as being experienced in LP shunted patients, caused by the overdrainage of CSF and you may like to read this article unilateral-hearing-loss-following-shunt-placement for normal pressure We also have other members who have had this problem after being shunted. http://www.ihaveiih.com/t325-hearing-loss
IIH does cause Pulsatile Tinnitus but as far as I know nothing has been documented on it causing hearing loss. Diamox also can cause hearing problems and tinnitus so it might be worth asking your Doctor if it could be a possibilty. Here is a link to a site that I think you will find helpful and informative Hearing Loss and Sudden Hearing Loss I think by reading the information on them you will be in a better position to go back to your Doctors and question them about the cause of your hearing loss, because you really need the answers to your questions and to know that you aren't in danger of losing your hearing in your other ear.
I hope this is helpful, and please keep us updated on your progress.
Heidi
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ksefcovic05
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PostSubject: Re: Karen - Diagnosed April 2011   Sat Jan 07, 2012 2:00 am

Thank you all so much for your responses. I am so confused too. The neurologist was the one that told me that my pressure was at 300% and I never thought anything of it but now wonder what the numbers really were back in April 2011. The reason why I was discharged from the hospital on 1/3/2012 was because I had an lp done and my neuro surgeon said that he could do no more for me even though he knew of my headaches again and hearing loss. I have gone to another doctor through another health system and see if I can find a soul that can help me figure this out.
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medmisfit
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PostSubject: Re: Karen - Diagnosed April 2011   Sun Jan 08, 2012 8:22 pm

If you don't get any info from neuro, submit a release of info to the hosp. They usually have them on hosp site. You can request all your records or info for specific dates or procedures. The LP report should have your opening & closing pressures listed. I hope you' re able to find some answers soon!

Take care,
Julie
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sammyjo
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PostSubject: Re: Karen - Diagnosed April 2011   Fri Nov 23, 2012 1:14 am

karren i think you have just answred a question i had i have always known the damage to iih suffres eyes can be permanent but i always wondered i the swooshing in my ears coz of the pressure could cause permant damage,,, i am so so sorry this has happened to u nut thank you for answering my un asked un answered question x x xgood luck karren my prays are with you x
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