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 Diagnosis of Pseudotumor Cerebri (IIH)

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Vernor
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PostSubject: Diagnosis of Pseudotumor Cerebri (IIH)   Sat Jun 29, 2013 4:47 pm

My neurologist told me that nothing showed on the cerebral angiogram.  I am to undergo another LP in 2 weeks but he suggested that he thinks that IIH is the diagnosis.  He also said that he recommended a shunt - which sort of surprised me.  Instead of trying diet and meds he seems to be jumping right in and advocating for the shunt.  Any ideas suggestions.  I have dropped another 6 lbs and have been watching my salt intake - no difference.  

I am somewhat afraid of the shunt.  Please share your experiences with both. This last month has been sort of mixed - lot of bad days but some good.  I think part of the severity of my symptoms is the stress I am under.  I am the primary caregiver of an elderly mother and also issues at work - none of which are going to change in the immediate future.

I sometimes wonder why I have been blessed :no: with this but I guess we all have a cross to bear.

Thanks for the support

Marc
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MarkyMark
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PostSubject: Re: Diagnosis of Pseudotumor Cerebri (IIH)   Sun Jun 30, 2013 3:51 am

I empathize with you. My dad had a stroke last year, about 6 months before i got sick. Mom and i are taking care of him. Then mom had to take care of me for a few months. This disease really took a toll on my job as well. So you are not alone. Please feel free to vent. It sounds like we have a lot in common.

The one thing i would encourage u to do is get a sleep study. The bipap has really helped me. I would encourage u to try that and also get your hormones checked. And maybe an mrv of the neck would be good to make sure u dont have stenosis. Just my opinion. Hang in there. We are with you!!!
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Heidi
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PostSubject: Re: Diagnosis of Pseudotumor Cerebri (IIH)   Sun Jun 30, 2013 7:01 pm

I too am surprised that your Doctor has suggested a shunt without first trying you on any medication, which is the usual approach. Has he said why he thinks a shunt would be appropriate straight off the bat? We have two booklets Talking to your Doctor about IIH and Talking to your Neurosurgeon, which have useful questions in that you could put to your Doctor and explore other possibile treatment before he dives into a shunt.

Shunts are a longterm treatment and this is why they are usually only done when there is a threat to vision and the medications are no longer effective. Has your Doctor had any experience with patients who have IIH? Have you even been put on any of the medication for IIH? If not ask your Doctor why he isn't trying medication first. Stress can affect your headaches, and you are under quite alot at the moment. With caring for your Mother, you have alot to consider I know. Your Doctor needs to be exploring other options before surgery first or at least give you the options.

Please keep us updated, and we are here for you to help and support you.
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Wylee
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PostSubject: Re: Diagnosis of Pseudotumor Cerebri (IIH)   Thu Jul 04, 2013 12:33 am

Vernor, I recommend that you ask your doc about doing a lumbar drain test to make sure that a shunt is the way to go.
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Vernor
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PostSubject: Re: Diagnosis of Pseudotumor Cerebri (IIH)   Thu Nov 14, 2013 12:50 am

Sorry I have not been active for the last few months.  My mother is now on Hospice care and that has taken most of my attention.  

I did undergo a trial shunt in October.  I am fairly tolerant of most medical procedures but this was very painful.  The Dr had a difficult time placing the shunt due to some issue with the tendons(?) surrounding the spine.  When hd did finally get through he made contact with several nerves and pain shot down my legs - worse pain was in the cheek of my butt - it was horrible.  They finally got the shunt placed and I laid in bed for 2 days while they drained spinal fluid in a controlled manner.  Initially I thought it was working but long term it did not - still had the headaches - unilateral pulsatile tinnitus vision issues.  I asked what was next - possibly try diet and meds?  He stated that the procedure - trial shunt - was essentially equal to what going on Diamox etc.  He essentially walked away from me with no further suggestions.    I went home and of course was one of the 10% that have headaches and had to undergo a blood patch to stop the fluid from leaking.

I am unsure of what I should have expected - immediate improvement?  No one ever really explained to me what to expect and of course I was to ignorant -to tired - overwhelmed to ask.  I am very discouraged at this point.  Could I still have IIH.  A diagnosis of IIH at least gave me sense of relief.

I see the Dr. that referred me to this neurologist Friday.  If he has no answers or further directions I am not sure where to go from here.  I will post further developments
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Wylee
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PostSubject: Re: Diagnosis of Pseudotumor Cerebri (IIH)   Thu Nov 14, 2013 5:17 pm

Oh Vernor, I am so sorry that you did not get relief from the procedure.  My docs referred to it as a lumbar drain test.  I was fortunate in that at the end of three days I felt much better.  I only wish you had the same results.
Sounds like you need to see specialists??  Have you contacted the IHRF in Oregon to see if they may have some ideas?  I will look through my notes and see if I can come up with some other suggestions.
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medmisfit
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PostSubject: Re: Diagnosis of Pseudotumor Cerebri (IIH)   Thu Nov 14, 2013 5:28 pm

Usually people are diagnosed with IIH after getting some relief from draining spinal fluid. I would ask the doctor if it's possible your pain and discomfort from issues with placement could have affected the outcome of the test. IIH can be secondary to other disorders and does make us prone to other headaches/diseases, so could also be a combination of things. Hopefully your doctor will be able to help you sort it out and figure out the next step. Meds and weight loss are usually tried first because surgery is so intrusive..just be persistent and ask for 2nd opinion if you don't feel like you're making progress.
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