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Gent perfusion

Discussion in 'Your Living Room' started by Saera, Jul 11, 2019.

  1. Saera

    Saera Active Member

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    Hey all....
    So I’m the newbie who posted questions about a laby. I saw the surgeon/neurotologist today and while there had two short spins and incidentally had a drop attack this morning before my appointment. When I got there I was given a hearing test and as expected my recognition is at 52% and I have moderate to severe loss in low times and now affecting the upper tones. So she agreed that a shunt probably wouldn’t do much long term for me. She had agreed to schedule me for a laby but in the interim wants me to do gent. She put a tube in my ear and gave me 40 mg today. Then tomorrow i am to instill gent drops into my ear daily for two weeks. This is to hopefully save me a laby but if not it will hopefully make my recovery afterwards better.

    Has anyone done gent perfusion like this? She says I will have imbalance but that will be no matter what we do. And that with as sick as I’ve been and my poor hearing that this chemical ablation is appropriate and that I’ll need some help regaining balance but it should stop all vertigo and drop attacks.

    Advise and encouraging stories and words would be so appreciated. As I’m terrified of how these next two weeks will be. I just can’t handle much more spinning and puking!!
     
  2. redwing1951

    redwing1951 Well-Known Member

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    The best advice I can give is to get ready to walk A LOT!! Most likely the gent won't kick in for a few days so don't panic. Once it does you should feel like you are on a boat going over gentle waves and bouncy. You might feel like a bobble head.
    This will last for about a week or more. Start walking as much as possible. Walk on different terrain. Use walking sticks if you need them. This is so important to do. Your brain will adjust to your vestibular system being destroyed on the MD side and the more you walk the sooner it will compensate. Make sure you get plenty of rest in between your walks. It's not a pleasant time but should only last for a couple of weeks before you start feeling better. Keep us posted on your recovery and best of luck. Walk,walk,walk.
     
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  3. Saera

    Saera Active Member

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    Thank you redwing! She did an injection today and then wants me to do drops in the tube she put in my ear three times a day for the next two weeks I guess? She will still a laby if this doesn’t work but wants me to kill off hopefully all function but if not then at least anough to make recovery easier after a laby. She says my hearing will go with this dosage and frequency of gentamicin.

    I’ve had 1 drop attack and three mini spins today on 15 mg of Valium. Nothing stops or slows them down anymore. Perhaps that’s why she is doing this gentamicin perfusion as well as scheduling me for surgery in a month.

    She said to be off work for two weeks or so to work on walking and compensating so I’ll do my best!!!

    Are you from MN? I think another member here is and I am as well!
     
  4. redwing1951

    redwing1951 Well-Known Member

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    I live in NH for the summer and fall. I then fly off to Florida for winter. I have a wonderful life living and playing in the great outdoors.
     
  5. Saera

    Saera Active Member

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    That’s awesome!! I look forward to traveling next year for my wedding in Monterrey CA. Have to get this beast in check first.

    Have you heard of people doing gent at home like this? I can’t find much info on it.
     
  6. AnneT

    AnneT Active Member

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    Hi saera
    Check out my thread, “how do you know if the gentamicin has worked?” for a recent/ongoing experience with (so far) the single injection with 40 mg.

    From what I’ve read and experienced, that may be sufficient. The tube and daily additions protocol was studied but didn’t seem like it was better than just doing injections. I certainly had a dramatic reaction, though it came on gradually for 2 weeks, peaked, and now my balance is improving.

    Dr. Hains’ articles (lots on dizziness-and-balance.com) make sense to me.

    I don’t think you’ll be harmed by the daily gentamicin- maybe it will give you a more robust reaction, and higher chances of getting vertigo free without surgery.

    If nothing else, I figure doing gentamicin (whatever dosing schedule) should make vestibular recovery easier, if we do need to progress to surgery. And it might spare, or in some cases, oddly enough improve hearing.

    I needed a couple of days on benzodiazepines and meclizine, at that 2 week peak, to cope with nausea (and positional mild vertigo- not attacks) - but that seems to be a rare effect). Don’t torture yourself- if you need meds for a couple days, it’s ok. It does then get better. Plan on resting lots - my brain was tired. But also (before the gentamicin takes effect) learn your vestibular rehab exercises, and get a cane.

    I hope it works for you, and that our stories help you! This forum really got me through it.
     
  7. Saera

    Saera Active Member

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    I did read your whole thread and am so glad you took all that time to share with everyone what it’s been like for you!

    I got 40 mg today. I have had attacks today and plenty of meds. Tomorrow I start doing the drops at home three times a day. This will go on for two weeks. I will update on here how it’s going. But yes, her hope is that this will eliminate vertigo and drop attacks and spare me a labyrinthectomy. But if not then I’ve got a head start on compensation post-operatively.

    My laby will be scheduled tomorrow or Monday for sometime in about 4-6 weeks so we shall see what happens in the meantime. I appreciate you calming my nerves. I can handle imbalance and feeling off. But not spinning and puking.

    Taking it easy and not working for the next couple weeks is going to be very hard for me. I have 4 busy kids and a husband. I’m the caretaker and person who keeps things in order and controlled chaos. To be still and focus on me will be very hard. But do is laying on my bathroom floor and going to the ER three times in four days. Lol.

    The struggle is real!!
     
  8. AnneT

    AnneT Active Member

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    Oh wow! You’ve got lots on your plate. There’s another guy on here who wrote about his gentamicin journey and I think his worst days sounded much milder than mine.

    All I can add is - let people know what’s possibly going to happen over the next few weeks- friend, family, and church/synagogue/mosque type community you’re comfortable with. Keep track of any offers of help, ask if you ask short notice etc. Can Husband call in absent from work on short notice? Even just having a helpful friend over for an hour or two, and asking them to do a chore or two, and keep you company; or someone to take the kids out so you can have quiet will enhance your sanity and recovery!

    Not knowing when you’re crappiest day will be makes planning hard.

    Try to prepare some meals ahead of time, get play dates/babysitting backup plans, etc just in case. I wasn’t able to drive - I’m just feeling now that I’ll try driving in a few days (swiveling head left and right is still mildly effortful on my eyes). Noise, environments where there’s movement (kids would count!) were utterly exhausting for a few days - even seeing wind moving branches. I didn’t have much appetite so didn’t feel like cooking for a few days. I’m lucky that my boys are grownup and Hubby is housetrained:) (me, not so much lol)

    How old are your kids? They may be thrilled with sendout or cereal for a couple of dinners!
     
  9. Saera

    Saera Active Member

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    I will try to search for his journey as well. Today I have the same wretched tinnitus that usually means I’ll have an attack. So my meds are sitting right next to me ready to chew/dissolve anytime. I cannot find one person or study about people doing gent drops at home so that bothers me some as I can’t read other experience or the turnout from it.

    How many injections have you had now? 2? I hope you’re feeling strong enough to drive soon. I’m sad that I won’t be getting my morning starbucks.
     
  10. redwing1951

    redwing1951 Well-Known Member

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    Saera my OTO from Mass Eye and Ear Infirmary told me that if 2 gent shots don't stop the vertigo than more than that most likely will not. I stopped after 1 shot because I felt like crap for 8 months and vertigo returned. I said no more just get this over with! He never mentioned the treatment you are doing.
     
  11. Clare

    Clare Active Member

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  12. AnneT

    AnneT Active Member

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    Saera
    Once I’m home on my computer I can more easily look for those articles etc for you.

    I’ve had one shot, on June 5. I’ll see my doctor on Monday July 15 for consideration of a second one, or the wait and see approach (if vertigo attacks recur, go for second shot then.)
     
  13. AnneT

    AnneT Active Member

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    Tim Boysen’s gentamicin thread is in the Database under Traditional Treatments.
     
  14. Saera

    Saera Active Member

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    I think my doc is doing this because she can’t even get me in for a laby for 4-6 weeks. So she wants to start killing off the function ASAP to stop my attacks. I had 4 yesterday. Short but definitely there and causing all sorts of anxiety and heart stress. I will probably still have the laby at his point but who knows what will happen with this style of administration. Lots of unknowns.
     
  15. Saera

    Saera Active Member

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    Thank you! I’ll go look now.

    I had the total of one injection yesterday and will continue with daily for two weeks. Seems like a lot and has me kind of nervous. But her explanation made sense. So I either have to trust her or not. That’s tough and producing much anxiety.
     
  16. Saera

    Saera Active Member

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    Last night was my first set of drops at home. Woke up today in vertigo. Altogether this is Day 3 we will call it. Injection on Thursday. Nothing until Friday evening as pharmacy was delayed with the drops.

    Today might be a rough one. Head movement makes me dizzy and nauseous but holding still I feel fine. Hard to know if it is menieres or the gent. Waiting for the fiancée to get home so he can serve me iced decaf coffee. While I binge watch Hallmark movies. Will try to walk later when I know he’s around to help me.

    Here’s to day 3!
     
  17. AnneT

    AnneT Active Member

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    Is this vertigo the same direction as your usual attacks? Slower? The fact that it stops if your head is still sounds hopeful that maybe it’s the gentamicin (or just the inner ear rebellion against fluid being there.)
     
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  18. Saera

    Saera Active Member

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    It was much slower. I never threw up. Valium helped. And I was able to sleep it off. It has lasted pretty much all day. It’s better now though so still uncertain of what the cause is. If it was menieres I hope it’s my last one. If it’s the gentamicin I hope I’m just going to be able to manage it as it comes.

    Man, what a hard and uncertain path we are all on.
     
  19. AnneT

    AnneT Active Member

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    Tough crazy path for sure. Just take it hour by hour, moment by moment for now. You’ve got this.
     
  20. Saera

    Saera Active Member

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    Woke up today. No dizziness. Must have been a menieres attack yesterday. Albeit much different than any others I had. Today is day 4. I plan to stay home but do all my not a cleaning and housework activities and see how it goes. Appreciate everyone’s feedback and support. It really gives me something to look forward to since no one else gets it.
     

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