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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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    Alright guys....

    My hearing has significantly changed for the worse. However at loud dB I still have 52% recognition. I think I’m just a good guesser. Lol.

    Dr. Huang asked how my gentamicin journey has been. I told her about vertigo two days later and none since. That days 6-9 I could hardly walk. That now I can’t turn my head quickly and that I have trouble in stores or on the computer. That I lose balance quickly when doing tasks that require bending over. That long days make me feel like I might have an attack but they don’t come. I just get queasy.

    I said “I’m ready for the laby. Let’s just get it done!”

    To my surprise. She shook her head no and said there’s no need. Between my hearing decline and what I described about my experience she believes from HER experience with other patients who’ve done this protocol that we effectively did a chemical laby. That I’ve probably lost 90% function on that side and that will suffice as to stop vertigo and drop attacks and that now my focus needs to be rehab for compensation. That my imbalance and current feelings are not going to be vertigo that it simply means I have more recovering to do.

    I asked “what if vertigo comes back?” She said I don’t think that will happen but if it did we would confirm with the water in the ear test and then do a laby. But most likely it would be from my good ear if that happened so she’d want to be sure before doing an unnecessary laby on an already dead ear.


    So that’s where I’m at. I have to trust her and have faith in the gentamicin. I said “I know others who have had it and then vertigo returned later. I don’t want that.” She said that’s when people space a few injections weeks apart to save hearing. Which is not what we did. We flooded your ear daily with gentamicin for 21 days plus did a booster injection to start and essentially did a laby that way. This is much more significant than the low dose protocol. So I should trust it and get back to living.

    So guess that’s what I will do. Xoxoxo.
     
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  2. Onedayatatime

    Onedayatatime Active Member

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    Sounds like an all to familiar story. Lets see how long we can drag this out. Perhaps God is trying to teach us patience. You have to choose to trust someone. Might as well be the Doc who seems to give a rats a$$. My Doc always says "this is what I would do if it was my ear" when he tells me the next step. I call it the sucker punch.
     
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  3. Saera

    Saera Active Member

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    I feel like she was being sincere and felt very confident that it had done the trick. Saving me a surgery. Time will tell if she’s right.
     
  4. AnneT

    AnneT Active Member

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    Thanks for sharing the results and details of your conversation and the doctor’s rationale. It makes me glad that I pushed for the second shot, even though I’m mopey with the bouncy eyes etc right now.

    I get those feelings too, of whoop is that a mini vertigo? And then it’s gone. Besides that feeling, I’ve had no attacks since June 5.

    We can rehab together here! Let’s cheer each other on.

    Hopefully you will feel well enough to work soon... get the fiancé off your back ... and start a savings account for laby time, just in case!!
     
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  5. wendy

    wendy Member

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    It makes sense what your doc said. Hopefully you are feeling less anxious about your situation
     
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  6. AnneT

    AnneT Active Member

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    After sleeping on it, how are you feeling about the plan?

    Did your Dr H suggest a vestibular Physiotherapist, or give you any exercises?
     
  7. Saera

    Saera Active Member

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    Those feelings of “is it coming?” And then goes away. She says is very common in gentamicin labyrinthectomy patients. So she says I’m right on track.

    She did. I meet with them on 8/20. I am nervous. But time will tell. I’ll keep meds with me and probably not go a lot of places alone for awhile. It’s like PTSD.
     
  8. California Sun

    California Sun Active Member

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    Saera, I keep good thoughts for you, that this will be the end of it and you can go on with your life.

    If by some chance, this were not to work, did the Dr. say when that would become apparent?
     
  9. Saera

    Saera Active Member

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    She said if I have vertigo or another drop attack she’d go to a laby after making sure it isn’t my good ear that’s now causing issues.
     
  10. Onedayatatime

    Onedayatatime Active Member

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    Are there plans to do a VNG test at some point to see how effective the Gent was? BOL to you on the rehab and getting on with life.
     
  11. Saera

    Saera Active Member

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    Those aren’t considered accurate. According to some studies. Right now it’s wait and see what happens. She feels confident it’s at least 90% dead.

    Not sure what else I can do unless or until I have more attacks. Praying I don’t!

    Anxiety is still at an all time high. That will take time.
     
  12. Clare

    Clare Active Member

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    From your description of how you've been feeling (really lousy), it sure sounds like a chemical laby to me. The first month after my surgical laby was tough, but the next month was much better, and by 4 months I was doing what I wanted to do and enjoying life in ways I hadn't in decades.

    I stopped the diuretics right away -- so nice to be free of the side effects. I had to take valium for the ride home from the hospital, but was advised to avoid it afterward so my brain would be alert to the changed balance signals for retraining. Zofran was helpful for nausea in the first week or maybe two, and then I didn't need it. I ate the foods I'd missed for 15 years (but often found prepared foods too salty for my taste). Through the recovery I tried to compare my progress week to week and month to month, noting the positive changes, which helped restore my confidence. It's rough for you now, but know it will get better and you will find yourself doing things you couldn't prior to treatment.

    You've got this.
     
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  13. AnneT

    AnneT Active Member

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    Saera
    Good to know that my “woop” feelings are common with gentamicin.

    I get you on the ptsd.

    Good idea to have some anti nausea meds in your pocket for after the physio appointment. You probably won’t need them - this will be nothing compared to what you’ve coped with already!

    Optimism thought for the day:
    I can’t remember if I shared this, but a coworker of my Hubby has Menieres. She had a single gentamicin shot years ago, and is doing great. I mean, she works a stressful job! Wow! She gets the occasional vertigo feeling, but nothing that takes her out.
     
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  14. DianeD

    DianeD New Member

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    Saera, I've been following your journey here with interest since you posted your thoughts on my earlier thread. It's one of those great mysteries of medicine, and indeed of life in general, why some things work for some and some work for none. We here have all been wise to find a doctor we think we can trust and then to do our own research, if only for gaining confidence in the treatment path we chose. We should all keep in mind that the docs have the benefit of experience in their own practices, but other than specific research studies, there doesn't seem to be any huge overall data base of results on any particular treatment, so each of us is a study in itself and by sharing our stories we do help each other. It sounds like your doc has great confidence in your treatment and progress, and you should take heart in that. Enjoy each day that is better than the last and pray for the next.

    The few minutes we get in any doctor's visit does not fully document our individual journeys and all the bumps we deal with along the way. I often think, "this doc has no clue how this really feels", but we all do! There's an old African proverb that goes, "it's only after you have crossed the river that you can tell whether the crocodile has a lump on his snout". We are all sharing information about the crocodiles we encounter on this journey and it is valuable. Remember that the detail you share about your journey, and all the encouragement you offer to others, is helping so many more that do not post but are surfing for information and help with this disease that so few understand. I remember my Mother used to talk about a friend who had vertigo, and as a kid I thought, "what's so bad about a little dizzy"? Hah! Now I know.

    I count every day now without vertigo a blessing and it's been almost 2 weeks. In my case, I think I have John of Ohio and his JOH plan to thank. I started that about 3 weeks ago. But who knows, this disease has such crazy ebb and flow to the symptoms that who can say. And I worry for the future because so many here have posted that they've been on the JOH plan for a long time and have relapsed with vertigo and other symptoms. At least I feel like I'm making a choice to go after it for now in an unconventional way since the doc's way of diuretics alone isn't working for me.

    So, I say stay the course you and your doc have chosen, take encouragement from those who have been down the river, and pray for the best as I will do for you. I hope to see future posts from you that show you are on your way to a full recovery and a grand life ahead!

    Diane
     
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  15. Saera

    Saera Active Member

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    Thank you all!! Been having some family stress so that has not helped ease my anxiety at all.

    I have been still using drops twice a day to finish off the bottle (doc said that would be fine) and between that and the way the medicine works she said I may still decompensate more before I start to go in the positive direction.

    Yesterday was super tired. Now this morning I have a bit of this nystagmus feeling and took a little Valium as that caused me to start to freak out. Today is rain and storms and a good day for resting, crafts and self care.

    Today I’m checked out from family and the issues that have come with exes and the stress they cause. I just can’t take that on right now on top of trying to work with my body instead of against it.

    If anyone wants to read my blog that describes more of my journey, like Diane was saying it may help someone else, I’ll type the addresss below.

    Hugs to all and hope you have a good day doing whatever part of healing you are doing. ❤️
    menieresandme.com
     
  16. wendy

    wendy Member

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    I read your blog and you are a great writer! Your posts reflect your writing skill as well. Thank you for sharing your journey.
     
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  17. Saera

    Saera Active Member

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    Anytime! Please feel free to share with anyone who may want or benefit from reading something like it.

    Big hugs.
     
  18. Saera

    Saera Active Member

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    So after seeing the doc last week she said I should just finish off the bottle of drops. So I did drops twice a day for another few days. Now I’m back to feeling super off balance and queasy a lot of the time. Also having a headache the last two days that isn’t helping at all.

    Tinnitus is up a notch or two as well.

    So all this to say my anxiety is through the roof. Is it the gentamicin or is it menieres? I wish she’d have just agreed to the damn surgery and then I wouldn’t be panicking because I’d know that after that day I’ll be good. Now I’ll always wonder.

    I hate menieres and Valium and zofran and tinnitus and pressure and headaches and all of it!!

    I’m so flicking it all off and cussing it out.
     
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  19. redwing1951

    redwing1951 Well-Known Member

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    ......my thought is the gent is still working especially where you did take the drops the last few days. Don't panic...tinnitus can be up for a few different reasons and stress is one of them. Try to focus on positive thoughts and breathe. Maybe get a walk outside if you can tolerate it and rest. Tomorrow is a new day.
     
  20. AnneT

    AnneT Active Member

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    Hopefully the queasy off balance feelings mean the bonus gentamicin is killing off more of the Menieres. I know, it’s hard to be patient!!

    Are headaches new for you?
     

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