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 Confused. Frustrated. Ready to scream.

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PostSubject: Confused. Frustrated. Ready to scream.   Mon Aug 08, 2016 7:00 pm

Hey all.
New to this group - however, not new to IIH.  Feeling a little lost at the moment, so i figured maybe i'd pop in and see if anyone has had a similar experience, or can shed any light on my situation.

I was diagnosed with IIH back in December of 2010 - although, i'm not really a "textbook" case.  I am not overweight (I'm 5', 115 lbs), I am not o birth control, I haven't taken vitamin D in excess, etc.

They tried me on high doses of Diamox for 6 months after I was diagnosed, and my pressures were still incredibly high (opening pressure was usually between 35-40).  So in June of 2011, they finally decided to put in a VP shunt since my vision was starting to become affected.

After my shunt was placed, everything was fine.  I felt completely normal and things went back to regular life.  I went back to work, graduated nursing school, began working as a registered nurse on a geriatric floor in a local hospital, and just got married this last March.

Fast forward to May of 2016. I woke up at about 5am on May 27th, with THE ABSOLUTE WORST headache of my life. I couldn't even speak.  I was brought to the emergency room, where they did a CT scan and found that the shunt had possibly occluded, and collapsed my right ventricle.  I was admitted, and they put me in for surgery in the beginning of June to remove the VP shunt and insert an LP shunt.  Now, keep in mind, the surgeon who was assigned to me is magnificent - he really is one of the best in NYC. A few days after the LP shunt was placed (he converted it to an LP rather than just doing a revision of the VP, because he doesn't like VP shunts as a whole), I woke up one day with a GIANT lump on the right side of my lower back. I mean literally the size of a softball.  So he put me back on the operating table because he was thinking the shunt malfunctioned.  The lump started going down, so I was discharged from the hospital.  One night while I was home, the lump returned, and my abdominal incision (which I've had since the VP shunt was placed, they just reused the same incision so I didnt have more scars) began leaking CSF.  So we went back to the hospital, and they did ANOTHER surgery to "fix" the LP shunt that was malfunctioning again.  They gave me about 10 days to recover, but after that timeframe I was still symptomatic and I still had a huge lump on my back (which was all CSF fluid pooling), they decided to remove the LP shunt and they put in a VA shunt.

So I have had 4 surgeries from May-July.
I am still having constant headaches - but they don't really feel like pressure related (I've had a few shunt taps done, and now my pressure is always too low). The headache doesn't change if I change positions.  I am still getting incredibly dizzy if I move my head too fast, and my lower back is still killing me (i forgot to mention, during the very first surgery, when they pulled the VP shunt and put the LP shunt in, they had to do a laminectomy) and I just feel off.  I just don't feel right, but I can't put my finger on what it is.

At this point, my surgeon is a bit baffled.  When I have a functioning shunt, my pressure is too low (it is on the lowest setting it can be on without being closed off completely) but when my shunt is failing or malfunctioning, I have too much CSF. 

My surgeon has taken a "lets wait and see" approach, but at this point, I'm getting really sick of waiting.  He's tossed around the idea of doing another surgery to look for a CSF leak in my spine from the laminectomy and maybe that could be the cause of all my current symptoms.  I'm just a little hesitant to have him open me back up again.  If there has been a leak from the first surgery - he's been in my back 3 times after that.  I feel like it should have been caught.  I've tried making appointments with other surgeons to get a second opinion, but either they have an incredibly long wait time (can't fit me in until end of October), or as soon as they hear who is treating me currently, they say they aren't familiar enough with IIH and wouldn't feel comfortable treating me.

My current surgeon has also thrown it out there that he's not even convinced I even have IIH to begin with, since I don't really meet any of the criteria - but then he says that and can't give me any suggestions as to what this all could have been all along.

Has anyone else here had a VA shunt put in, and just never been back to their baseline? Anyone have a shunt and still have constant headaches? It literally feels like someone dropped a bag of bricks on my head. 

I want to get back to work, I want to drive again (I haven't driven because if I move my head too fast I get dizzy and disoriented..i'm too nervous to be behind the wheel like that) and mostly, I want to get back to being a newlywed.. but I need to know at this point, if this is going to be my new baseline.
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PostSubject: Re: Confused. Frustrated. Ready to scream.   Tue Aug 09, 2016 4:09 am

maybe you should go to Johns Hopkins for a second opinion.  I don't know a ton about shunts, never had one.  it does sort of sound like you have a leak in your spine.  but if he's the best there is in NYC, then you should leave NYC for a second opinion because if he thinks you don't fit the criteria then he isn't an expert at IIH either.  look up the modified Dandy criteria and tell me what you don't fit.  obesity is not a required criteria.

FYI if I woke up ill at 5 am with anything, I would blame obstructive sleep apnea.  5 am is when REM sleep peaks and when OSA is worst.  it is when people with OSA who have heart attacks have their heart attacks.  OSA can spike ICP.  maybe it's just a coincidence but if you don't fit the standard bias model for IIH then maybe they should have kept looking for secondary causes.

I am so sorry for all of your troubles.  :-(
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PostSubject: Re: Confused. Frustrated. Ready to scream.   Tue Aug 09, 2016 5:34 pm

Ugh, that's awful! I have both a LP and VP shunt. My surgeon decided to leave the LP in place when I switched to VP because he said he has found it can leave pathways open for CSF to leak if removed, so I wonder if that's what you're experiencing?

I know that it can also take time to heal and for your pressure to stabilize, but the pooling fluid would cause me concern because it suggests there is still a leak somewhere. It is frustrating and disheartening, but don't give up! Unfortunately, they don't know a lot about IIH and I think it's trial/error for them too. Maybe just embrace the bedrest and talk to your surgeon about options.. next step or how long you should/could wait. A second opinion would be great if you're up for it, but it's been my experience that another surgeon won't touch you if currently being treated. IHRF may have additional information and resources, so you could also contact them (phone and email listed at www.ihrfoundation.org).

Let us know if anything more we can do!

Take care,
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Confused. Frustrated. Ready to scream.

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