Gent perfusion

I recorded my meeting with the doctor. I’m going to listen to it and see if I can pinpoint why she chose this route. Once I gather that information and look at the links your provided I’ll update!!

 

Okay. So listening to her and I converse gave me a clearer understanding of why she chose this low dose daily perfusion. We are not trying to save my shitty hearing we are trying to maintain a low but constant level of gentamicin to destroy the hair cells that are sending the wonky messages to my brain. The goal is to avoid a laby by doing this instead but if a laby happens I may recover quicker due to the ablation done by the perfusion at home. I will know it is working when my attacks stop or slow down and I find it harder to balance. Then I focus on rehab.

So far that’s the plan. Sound familiar?

 

Well today I’m out cutting down two huge eyesore bushes that I can’t stand in front of our new home we just bought end of May. Doing my drops and not feeling the effects yet but alas it is only day 4 really so I am getting chores done that I won’t be able to do easily while recovering.

How are you?? Did you post any updates on your thread?

 

Fingers crossed for you! Update when you feel up to it!!

 

Today is day 4 of drops. 5 since injection. Nothing yet but LOUD tinnitus and very tired feeling. We shall see what the day brings.

 

Today is Thursday. Officially one week out from the injection and 5 full days of drops. Definitely feeling some imbalance and wonky feelings. At times some nausea. Not spinning but like a slow dizziness that if I’m still is almost imperceptible. The more I move or turn my head, the more ick I feel. I assume this is the gentamicin doing its job. As well as tHe tinnitus getting louder as it’s killing my hearing too.

Made it to my sons playoffs games. Held onto my fiancé the whole time and had MAJOR anxiety throughout but stayed the course and even got some pictures. Tonight is another game and my stepson has a tournament this weekend. Hoping I can make it all. Even with some help. I am trying to keep moving and not give too far in to the iciness I feel. Whether it’s vertigo or the gentamicin working, I want to try and keep pushing through.

Here’s my adorable son playing ball just because I’m so glad I could go see him play. And they won!

 

Thank you. Right now I’m laying in bed for a bit. I have a game to try and attend tonight so I’m resting up in the meantime. This is VERY hard for me as I’m usually always on the go. I do think I’ll need some rehab. Anne T where did you get your ideas for “training” for vestibular rehab? I can’t get in for a couple weeks yet and I wonder if I shouldn’t start now even while still doing drops for one more week?

 

Super helpful. I just tried a few. And the side to side movements and bending over to lick something up is super hard for me. Never was before so this must be the gentamicin. Omg I’m happy I feel like crap. Hahahahaha!!

I’ll work on them slowly and take my breaks knowing I still have a full week of drops to go. I’m going to check out that thread now.

 

I have baseball tonight but will wear glasses and bring a cool cloth and cover my eyes like horse blinders to focus on what I can and not try to do too much. Super queasy today and uneasy. Small Valium and some zofran before ball as well. Then home to bed!

 

I a dolly owners the gentamicin. If I lay still in bed and don’t move I feel pretty darn good. Start moving around and I’m sea sick! 6 more days of drops then I will see what’s next. I’d like to KNOW it’s done it’s job before starting rehab full force and venturing out with confidence and not my buddy anxiety.