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 lumbar shunt revision #3

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medmisfit
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PostSubject: lumbar shunt revision #3   Sun May 06, 2012 5:39 am

I had daily head & spinal pain for three years before I found someone that understood my symptoms. I had seen three different surgeons during this time..one that even presented & sat on a panel at the IHRF Conference last year. They all said my symptoms were from low pressure because my shunt was overdraining when I was upright, but there was nothing they could do because my LP always had a normal opening pressure. I spent all that time trying any medication or alternative therapy suggested in hopes of finding relief, but what I found was a renewed trust in myself. I think most of us have those moments in diagnosis or treatment when we feel we're losing our minds. We doubt our symptoms & start to question our ability to judge/manage pain. We're told nothing can be done or are belittled by the opinion of an "expert".

I've really been kicking myself because I had fallen into the trap & started to give up hope. I honestly was ready to accept my fate & be miserable because all these specialists were telling me it wasn't going to get any better. They did acknowledge my pain & seemed to know what they were talking about, so why continue to beat my head against the wall & continue to throw away a bunch of money on things that don't help..it's all so exhausting! Then I saw a post from another member that broke my heart. Someone so discouraged by the experts that she was actually doubting her pain. I responded to her post & was reminded of advice I was given by a diagnostician many years ago. He told me that no one knows my body better than I do, so I should never stop looking for answers until I've found someone that hears me. Laaaaaa..I heard the angels sing..lol. It was a true epiphany & just the kick in the pants I needed to try again. I called my neurologist & asked for another referral. He had done a MRI & thought everything looked the same, so gladly passed me onto a pain management specialist. He was awesome! He heard every word I said & validated all of my concerns. He agreed that there seemed to be an issue with my shunt & offered to refer me to Cleveland Clinic. He ran some tests to rule out other possibilities, but refused anything intrusive like another LP. He even made follow up appointments at no additional charge so I wouldn't get lost or forgotten..it just takes one person to make a difference, right?! I went to Cleveland Clinic & finally found some answers.

They looked at the MRI my neurologist had done, took my history, & told me my shunt was malfunctioning. They said my brain showed obvious signs of low pressure/fluid (not just developed Chiari Malformation or narrow channels that other surgeons noted, but things that could be caused by low pressure & may be reversible) & all my symptoms made complete sense (including the balance issues & tingling that no one else could place, but they said were typical & made perfect sense). They also told me that they haven't used LP for this issue in YEARS because they found it to be unreliable & archaic..even seemed surprised that anyone in this day & age would. They just used history & symptomology for diagnosis..reminding me that LP should always only be used as a last resort. I finally had my surgery last week & have had no head or spinal pain since they replaced my valve/catheter. I'm cautiously optimistic, so decided to post here instead of the success section..wouldn't want to jinx myself! I really just wanted to share some information about the things I didn't know & encourage those of you who may also be struggling..never give up!!!

Wishing you a pain free day!
Take care,
Julie
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Betsy
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PostSubject: Re: lumbar shunt revision #3   Mon May 07, 2012 2:42 am

Awesome! Glad youare feeling better. The Cleveland Clinic is full of great people, who do great work.
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Wylee
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PostSubject: Re: lumbar shunt revision #3   Tue May 08, 2012 5:24 am

What fantastic news Julie. I am so glad this has worked out for you. May the good times continue to roll on and on and on!!
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PostSubject: Re: lumbar shunt revision #3   Tue May 08, 2012 4:44 pm

Thanks Betsy & Linda! I'm still a little leery..like I'm holding my breath or waiting for the other shoe to drop, but we had storms again last night & I sat up to watch the rain..it's a great feeling! Now I just wish I'd heal, so I could get out and enjoy it..lol.
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PostSubject: Re: lumbar shunt revision #3   Wed May 09, 2012 4:50 pm

Great update, Julie!! Very Happy My thoughts and prayers are with you that everything continues to go well. *hugs*
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PostSubject: Re: lumbar shunt revision #3   Wed May 09, 2012 7:09 pm

Julie I'm so pleased for you it's about time you got a break hug cheer

Betsy so good to see you back we've missed you! hug
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medmisfit
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PostSubject: Re: lumbar shunt revision #3   Wed May 09, 2012 9:36 pm

thank you
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