Results 1 to 6 of 6

Thread: NS Dynamics Question

  1. #1

    Default NS Dynamics Question

    I posted here back in March, and you all were very helpful. Am hoping you can offer guidance on a NS dynamics question. NS 1 diagnosed me with communicating hydrocephalus in 2008, but now over-draining VP shunt (lateral & 3rd slit-ventricle); he suspects high-flow occult leak. Referred me to NS 2 (different hospital system) for 2nd opinion/consult. NS 2 says over-shunted, slit-ventricle, no occult leak & remove entire shunt system. Neither recommends myelogram because of additional leak site risk. Have complete Brain, Cervical, Thorasic & Lumbar MR series waiting to be sched’d within next week. NS 1 hasn’t weighed in on NS 2’s opinion; wants to review MRs, but it takes forever to get NS 1 on phone. NS 2 wants to move forward and can “squeeze me in” on August 29th when he’ll review MRs. I expect NS 1 objects heartily to shunt removal. So, NS 1 & NS 2 will be at odds, unless there’s obvious spinal leaking. My gut says 1) there is a hidden leak somewhere (based on history, shunt revisions & sudden onset), and 2) removing shunt is ludicrous because I’ll need one again at some point. I value both NS & I don’t want to irritate either (both nat’lly recognized on CSF leak & hydro issues - I'm lucky in this respect). Am concerned about 1) the vast difference of opinion, 2) that it seems they both want to take lead, and 3) timing – I’ll lose my job if I’m not back at work by mid-Sept; both NS know this. Anyone have advice on how to “juggle” NS 1 & NS 2? And/or, even tho it will take a couple months, should I go solicit NS 3 for addt’l opinion? Thank you in advance.

  2. #2
    Community Member LauraL840's Avatar
    Join Date
    Apr 2007
    Location
    NC, USA
    Posts
    19

    Default

    I think I'd go on and find NS #3 and make apt for opinion. Also, would want to know why neither NS is comfortable with myelogram which might give more definitive notice. Which NS do you think you can talk to about considering the myelo? Do you have Hx of weak dura? What is your Hx with pressure that necessitates the shunt? Sorry if I can't recall!
    Laura

    Better is one day in your courts than a thousand elsewhere
    ...

  3. #3

    Default

    Hi Laura: I agree and will pursue NS3 consult. Am 1/2-way thru scan series and no dural tears/leaks seen yet, altho severe spinal compression/disc damage/osteophytes/hemangiomae (1 benign & 3 questionable) in lumbar. Rad thinks damage extends to T-level; cervical/thoracic scans today. Push-back on myelogram/cisternogram due to near certainty of additional leak site and that they believe me to be intolerant to EPDs. Should get clarification today. No hx of weak dura diagnosed yet, but that's why scans ordered. Pressure hx is complex - can vary from hyper- to hypo-tensive within minutes. Shunt was placed after 3 rounds of CSF Rhino leak when I blew thru 3 fibrin patches within 12 mos. 3 shunt placements & 3 revisions since. Boy, my stuff comes in 3s, doesn't it? I also don't tolerate/aborb CSF fluid in abdomen owing to scar tissue. Think they're considering ETV. Also, think this all minor to the challenges most seem to endure here, but sure appreciate any insights!

  4. #4
    Community Member LauraL840's Avatar
    Join Date
    Apr 2007
    Location
    NC, USA
    Posts
    19

    Default

    Is it safe for me to guess that you're also posting on the hydro board? Thinking it's a pretty active board and you might get some great insights there as well! It's got to be frustrating as all get out to get opposing opinions from top physicians! We've been there and even survived it! LOL
    Laura

    Better is one day in your courts than a thousand elsewhere
    ...

  5. #5

    Default

    Actually haven't posted on Hydro board since March. Will do so and thanks. It IS frustrating, but again feel lucky to have solid (albeit contradictory) opionions from NS's I trust. I'm glad to know you all have survived this! Like I said, more of a social dilemma in many ways. The latest from all MRIs is that there is no occult leak and no relevant spinal compression. Simply over-shunted and now consensus is IH with complex hydro-like symptoms. Go Figure! Have decided to ligate shunt and see what happens. Fingers crossed! Hey question for you....you're in NC, yes? Have you/do you see Dr. Gray?

  6. #6
    Community Member LauraL840's Avatar
    Join Date
    Apr 2007
    Location
    NC, USA
    Posts
    19

    Default

    We are in NC and my husband has seen Dr. Gray! Just talked to her last week when I thought our son was going to have an LP! She's great!
    Laura

    Better is one day in your courts than a thousand elsewhere
    ...

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.