Treatment update eosinophilic meningitis

Treatment update eosinophilic  meningitis

Hi, please see my previous post. My surgeon discussed my case with two associates, and have recommended not doing the full surgery to remove fluid, repair spinal covering, and reattach muscles, and add a drain tube for a short while.

The have opted to do a lumbar peritoneal shunt. ???? Attaching a shunt tube in the lower spine, routing it to the outer covering membrane of the stomach. This should lower the spinal fluid pressure. The plan on draining the lemon size pocket of spinal fluid. Then the spinal sac should stop leaking, and heal properly.

The say the shunt could be removed, after further mri's show all is healed, and shunt isn't required any longer, about 6 months.

Any comments would be greatly appreciated. Jay Doyle

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  • Hi

    Thank you for your update. I am not sure whether anyone else on the forum has had a similar experience to you, but maybe someone will read this and be able to offer a comment.

    I hope everyone goes well with the shunt and would be great if you felt able to give us all an update on how well the shunt works for you.

    Claire

  • Had the shunt put in Friday last. The initial pain is a s bad as a lamenectomy. About 3 1/2 cut on the front, and back (lower) That it stitched. It is draining, as I can feel the neck getting a "hollow" but i have terrible head aches, have to take tyenol and lay down to stop them. I'was told the had aches will stop when the pressure change gets used to. I sure hope so.

    have been sleeping most og the time for the last 4 days

    As a side, the surgical tape dissolved my skin, removed it on saturday, left just the sugi-strips, took the off with no difficvulty today (wednesday)

  • Thank you for the update. I do hope that the post-op pain is now easing and that you are recovering from the op. Now that the shunt is in place, it will be interesting to see how this helps your syptoms. I sincerly hope that your headaches are now improving.

    Look after yourself

    Claire

  • The shunt disconnected from the stomach, and I had a fluid build up at the rear surgery site.

    It was in place about 9 weeks, and the surgeon opted to totally remove it, as the leak, should be healed by this time..

    It's been about a month since, feeling better, and the swelling is going down, the upper site has stopped swelling as well. So it looks like it may have worked.

    Still have hand shaking, some speech difficulty, when anxious. Thanks to eveery one who helped.

  • Thank you for letting us know about how things are going for you. So good to hear that you are, at last, starting to feel better now and the shunt has been removed. I hope that your other difficulties now start to improve over time. Take care.

    Claire

  • Thank you very much for you concern Claire. Meningitis, It's something you never expect, till it hit's you

  • Hi, the shunt pulled out of the stomach after about 8-9 weeks. the Dr's opted to remove it, and see if the leak had sealed itself. It did. I still don't know if my "pet rat" has been absorbed. Quite honestly, I fear going to the hospital, or any Doctor now.

    I went for an MRI with contrast over a year ago, and had a full on panic attack.

    As for the hospital that was buying NECC's illegally manufactured drugs, No one in the government agencies seems to give a hoot about it. I feel very angry about this. While in the hospital 18 months ago, unbeknownst to the Doctors, on her birthday, the told her they didn't expect me to live.

    I still have speech problems, slowness, stuttering, shaking hands, terrible short term memory, and depression. I tire very easily, most days I'll slip into a nap in the afternoon, if I get exhausted. I can't control this, and when I'm out, can not be awakened. I have leg weakness, it's difficult to get up if I kneel down. People look at me like why am I still this way after 18 months. If I talk about the meningitis at length, my speech degrades quickly, and at times tears well up.

    I can still remember while in rehab center, have the most awfull hallucinations, awake dreams that had me cowering in the corner, afraid of the nursing staff. I still have these type of terrible (sleeping) dreams at times. thankfully not too often.

    I used to work do on antique clock works, and was a network tech. for the telephone co. My anaylitical apptitude for trouble shooting is for the most part gone. Some times I forget what I'm talking about, mid-sentence.

    After reading posts here, I do realize I am lucky to be alive. People who haven't been here, have trouble comprehending just how overwelming it is.

    To all of us, this is a place to get some relief, by talking about how we feel.

    Thanks for being here.

    Jay

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