Author Topic: Gent treatment on Tuesday  (Read 34557 times)

Offline Alec

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Gent treatment on Tuesday
« on: Dec 15 2003, 02:03 PM »
I'm off to have gentimicine treatment on Tuesday 23rd. This is quite a big step because it is in my only good ear which will mean I will have no vestibular function left in either ear. It is a last resort but since I have been housebound for almost six months now I don't have much choice. Two specialists agree that it is my only option to get some sort of life back again. I will keep you posted as to how I get on. I am a bit nervous about it but realise it is the only way forward. I joined wobblers a few months ago. It is a group of people with no vestibular balance and they all seem to survive so I am quite hopefull I will compensate in time. Wish me luck.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline Fiona

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Gent treatment on Tuesday
« Reply #1 on: Dec 15 2003, 04:19 PM »
Hello Alec,
    Not really sure about what this treatment involves but I hope it's worthit for you.Unfortunately just before Chtistmas however my best wishes for a good result.
 Fiona

Offline jan

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Gent treatment on Tuesday
« Reply #2 on: Dec 15 2003, 05:03 PM »
hello alec,good luck for tuesday.i will be very interested in how you get on ,as my consultant  has mentioned referring me to someone else for ??gent treatment. i am  waiting for my appt to come through.
keep smiling!!

Offline our lizzy

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Gent treatment on Tuesday
« Reply #3 on: Dec 15 2003, 05:15 PM »
Hi Alec,

I hope everything goes well for you. It sounds a drastic step, but an email friend of mine lost all hearing and vestibular function within a year of starting with the disease. He has difficulties, but manages to work at least some of the time as a self-employed builder. He is very upbeat about it all and I admire him enormously. We all learn to cope with our problems because there is no option. Nothing can't be overcome. Perhaps you will only lose sufficient function to stop your vertigo and you will still have enough left to be of some use. I certainly hope so. Anything is better than the constant vertigo and sickness. Keep us posted. I will be thinking about you,

Lizzy
It is always darkest before the dawn!

Offline lady dumbledore

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Gent treatment on Tuesday
« Reply #4 on: Dec 15 2003, 08:15 PM »
hi alec
hope it all goes well for you
keep us posted on your progress

Lady D  8)
I used up all my sick days so i called in dead!

Offline Gail

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gent treatment on Tuesday
« Reply #5 on: Dec 15 2003, 09:38 PM »
Hi Alec,

          Hope everything goes OK for you, best of luck.

                                               Gail

Offline Elaine

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« Reply #6 on: Dec 15 2003, 11:14 PM »
HI Alec,

That's brill news that you finally got a date sorted out.It's a bit close to Christmas but I hope the stuff takes effect quickly enough so that you have a dizzy and sick - free Xmas!
If they do it gently enough won't you have a chance of retaining some balance function or does it all have to go at once? I'm pretty unbalanced and use a stick(or 2 on the days when my knees are bad) so I wouldn't worry too much about that bit.
Keep us posted,
Elaine xx

Offline Suzy

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Gent Treatment
« Reply #7 on: Dec 16 2003, 09:21 AM »
Good luck for the 23rd Alec hope all goes well.  When you are feeling up to it perhaps you could give us all an insight into the treatment and effects.  Merry Christmas and a Happy New Year to all fellow sufferers

Suzy
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barbara

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Gent treatment on Tuesday
« Reply #8 on: Dec 16 2003, 10:20 AM »
Hi Alec,
Good luck for Tuesday. It will be a brilliant Christmas Present when it gives you your life back, don't I know it. It will not kick in straight away and you will feel off balance when it does, nothing new there. Perhaps it will not kick in until after Christmas so enjoy it as much as you can.
We'll be thinking of you. :D

Offline Chris

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Gent treatment on Tuesday
« Reply #9 on: Dec 16 2003, 12:52 PM »
Hi Alec
I hope everything went smoothly today, I look forward to hearing about your progress and improvement to your quality of life. :wink:
Regards

Chris Scullion


The Longest Journey Starts With A Single Step.

Offline macell

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Gent treatment on Tuesday
« Reply #10 on: Dec 16 2003, 09:08 PM »
Hi Alec, Hope things went well today.  I have a pen pal who is also an MD sufferer and she has no balance now but gets about quite a lot with the help of a wheeled zimmer.  Not something we look forward to but at least a means of getting on with one's life.  Hope it makes your Christmas better and that 2004 will be better for you.
I am retired female, diagnosed MD 1996 but have tinnitus and hearing loss going back over 20years.

Offline Alec

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Gent treatment on Tuesday
« Reply #11 on: Dec 17 2003, 11:02 AM »
Thanks for all the messages. The big day is next Tuesday.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline Chris

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Gent treatment on Tuesday
« Reply #12 on: Dec 17 2003, 05:59 PM »
Doh :!:
Regards

Chris Scullion


The Longest Journey Starts With A Single Step.

Offline Christina

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Gent treatment on Tuesday
« Reply #13 on: Dec 17 2003, 09:44 PM »
Hi Alec

Thinking of you now and next Tuesday.  I guess it will be difficult but worth it in the end.  You've had such a rotten six months, hopefully there's some light at the end of a very long tunnel.  A better 2004 on the way.
not waiting for the storm to pass, but learning to dance in the rain ...

Offline our lizzy

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Gent treatment on Tuesday
« Reply #14 on: Dec 18 2003, 08:18 PM »
Hi Alec,

I do hope it will be ok by the time you come to nosh your Christmas dinner!

Lizzy
It is always darkest before the dawn!

Offline Alec

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Gent treatment on Tuesday
« Reply #15 on: Dec 18 2003, 10:52 PM »
I think my Christmas dinner should be ok, it takes about a week for gent ttreatment to kick in I understand. Soon find out though.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline marion

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gentamycin
« Reply #16 on: Dec 19 2003, 04:27 PM »
I hope your future will soon look better than your past.It seems you have little to lose apart from the isolation of being housebound.Best wishes to you and your family

Offline Chris

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Gent treatment on Tuesday
« Reply #17 on: Dec 19 2003, 04:36 PM »
Remember It also takes a week to eat it :!:
Regards

Chris Scullion


The Longest Journey Starts With A Single Step.

Offline lady dumbledore

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Gent treatment on Tuesday
« Reply #18 on: Dec 19 2003, 08:53 PM »
Quote from: "Chris"
Remember It also takes a week to eat it :!:


Wonder if the boss will accept: 'was still eating my xmas lunch'! as a reason for being off next saturday???  :shock:

Lady D  8)
I used up all my sick days so i called in dead!

Offline Chris

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Gent treatment on Tuesday
« Reply #19 on: Dec 20 2003, 11:31 AM »
Quote from: "lady dumbledore"
Quote from: "Chris"
Remember It also takes a week to eat it :!:


Wonder if the boss will accept: 'was still eating my xmas lunch'! as a reason for being off next saturday???  :shock:

Lady D  8)


Sounds reasonable to me :wink:
Regards

Chris Scullion


The Longest Journey Starts With A Single Step.

Offline jackie

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Gent treatment on Tuesday
« Reply #20 on: Dec 20 2003, 05:23 PM »
Hi Alec,
Just found your post after I have not logged in to the forum for a while - good luck with next Tuesday, I think you are doing the right thing in your circumstances and I really hope you will be feeling a lot better after it has taken time to do the job.
Best wishes
Jackie

Offline tricia

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Alex Gent Treatment
« Reply #21 on: Dec 22 2003, 09:36 AM »
Hi Alex

Hope things go well on Tuesday with the Gent treatment, hope it doesn't spoil your Christmas too much.

Best Wishes

Tricia

Offline yvonne

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Gent treatment on Tuesday
« Reply #22 on: Dec 22 2003, 11:20 AM »
Good luck for Tuesday Alex.  And I hope the new year is all you must be hoping for.

Yvonne

Offline Alec

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Gent treatment on Tuesday
« Reply #23 on: Dec 24 2003, 02:40 PM »
G+1

I had the gent treatment yesterday. It was not very pleasant but not as bad as I thought it would be. I have not had any reaction yet, but I didn't expect to straight away anyway. Watch this space.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline our lizzy

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Gent treatment on Tuesday
« Reply #24 on: Dec 24 2003, 06:27 PM »
Hi Alec,

So glad you survived the experience, unpleasant though it was. Let's hope it does the trick for you. I'll keep my fingers crossed,

Lizzy
It is always darkest before the dawn!

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Gent Treatment
« Reply #25 on: Dec 24 2003, 11:46 PM »
Glad you survived to tell the tale Alec!
let's hope it does the trick.What exactly do they do when they do it? I'm curious in case I need a next step(not sure about success of grommets right now)

Elaine xx

Offline Alec

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Gent treatment on Tuesday
« Reply #26 on: Dec 25 2003, 02:52 PM »
G+2

Feeling a bit unsteady today, nothing bad, just a bit more unsteady than usual so the drug may be starting to affect my balance mechanism. Cooked Xmas dinner and ate it ok.  :D
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline our lizzy

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Gent treatment on Tuesday
« Reply #27 on: Dec 25 2003, 04:25 PM »
Hi Alec,

Can't be bad! When are you coming to live at my house?? I could just do with somebody to cook my Christmas dinner! :lol:  My lot are really good at contributing their appetites! I don't know how long Gent takes to work although I suppose it varies with the individual. Hope you are having an enjoyable day,

Lizzy.
It is always darkest before the dawn!

Offline Alec

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Gent treatment on Tuesday
« Reply #28 on: Dec 26 2003, 05:21 PM »
G+3

Still not much reaction other than feeling a little unsteady. Nothing serious though. The hearing is down a bit but that may have been because yesterday was a busy day hearing wise. I did start to have a spin attack earlier but it came to nothing.  :?

Further to my post, I had another spin early evening but again it came to nothing. Very odd.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline our lizzy

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Gent treatment on Tuesday
« Reply #29 on: Dec 26 2003, 07:34 PM »
Hi Alec,

That sounds promising if your impending spin didn't materialise. I am so pleased you are keeping us up-to-date. I have no idea how long Gent takes to work or how you know it is working. My ears have been whistling, roaring and screeching today. I have been eating things I wouldn't normally eat yesterday and am suffering the consequences. Still, if it stops at noises I don't care!

Lizzy
It is always darkest before the dawn!

Offline Alec

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Gent treatment on Tuesday
« Reply #30 on: Dec 27 2003, 03:56 PM »
G+4

Started the day with a small spin attack at 3.45am.  :(  It never was a bad one, it just seemed like the others, never really got going. I was unsteady when I got up at 8.30 (lie in) and was much the same for about two hours. The unsteadyness went and I am now feeling ok. Hearing is a bit down but not by much.  :roll:
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline our lizzy

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Gent treatment on Tuesday
« Reply #31 on: Dec 27 2003, 04:12 PM »
I always think it is weird that spins come in the night. You would think that with everything at rest it wouldn't happen. It sounds as though the Gent treatment is kicking in now, Alec. Let's hope you can look forward to a good year in 2004,

Lizzy
It is always darkest before the dawn!

Offline jackie

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Gent treatment on Tuesday
« Reply #32 on: Dec 27 2003, 05:14 PM »
Hi Alec,
Just back from the time away at my parents' place where we had a great Christmas, hope you are continuing to be OK with the gent treatment and thanks for keeping us all posted.

I managed to walk up to the top of a hill at parents' place at Church Stretton so I'm feeling a smug glow of achievement right now as it is the first time in several years that I've been able to walk that far, and uphill too!  Although it was at a snail's pace - but the slow tortoise got there!.  My son kept me company but we got overtaken by a man on a cycle heading into the wind - he had legs like tree trunks (and how I wished I was fifteen years younger!)
:-)
 :lol:
Best wishes
Jackie

Offline Alec

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Gent treatment on Tuesday
« Reply #33 on: Dec 27 2003, 05:34 PM »
Nice one Jackie, it's so nice to hear when someone achieves something like that. I am so pleased for you.  :D
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline Elaine

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Gent Treatment
« Reply #34 on: Dec 28 2003, 01:08 AM »
That's sounding good Alec.And at least you got to eat your Xmas dinner without seeing it again lol :wink:
I've had my first dizzy free xmas for 3 years too  :D
Elaine

Offline lady dumbledore

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Gent treatment on Tuesday
« Reply #35 on: Dec 28 2003, 03:12 PM »
Hi Alec
glad everything seems to be going ok for you  :D
also just realised what the G+1 etc means  :?  hehe im a bit slow on the uptake this week

Lady D  8)
I used up all my sick days so i called in dead!

Offline Alec

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Gent treatment on Tuesday
« Reply #36 on: Dec 28 2003, 04:57 PM »
G+5

Still waiting for a reaction. I'm a bit unsteady but nothing abnormal in that.  :lol:  I expected a lot worse and so am quite happy at the moment but it may be just too early for the drug to be doing its bit. The next few days will be the big test.  :?

Yes, the G+5 means 5 days since Gent treatment.  :D
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline our lizzy

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Gent treatment on Tuesday
« Reply #37 on: Dec 28 2003, 10:24 PM »
Hi Alec,

Glad things are going well. Unsteadiness is a way of life with us Menierians!

Lizzy
It is always darkest before the dawn!

Offline Alec

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Gent treatment on Tuesday
« Reply #38 on: Dec 29 2003, 03:55 PM »
G+6

Hmmmm, a bad day. I woke up feeling very unsteady and then at 11am I had a full blown spin attack.  :(  Either the gent treatment has not worked or I need another injection to do the job properly. Of course it may also be too early for the treatment to have worked so I'm not too upset about it. My specialist did say it may take more than one injection. I will be seeing him next week.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

barbara

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Gent treatment on Tuesday
« Reply #39 on: Dec 29 2003, 07:48 PM »
Hi Alec,
Glad to hear you survived Christmas well. I think the spin G+6 is likely to be the Gent doing it's job. Any change in the status quo in the inner ear makes for the dizzies. It should settle. Here's hoping :D

Offline our lizzy

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Gent treatment on Tuesday
« Reply #40 on: Dec 29 2003, 08:28 PM »
Hi Alec,

Sorry about your spin today. I suppose the consultant might have been very conservative with the amount of Gent injected, in case of destroying what bit of hearing you have. On the other hand, the Gent might not have reached its full potency yet. Are you booked in for another one yet?

Lizzy
It is always darkest before the dawn!

Anonymous

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Gent Treatment
« Reply #41 on: Dec 29 2003, 11:23 PM »
Hi Alec,

Sorry to hear you've had a spin.Let's hope it's just a blip as the gent settles in or that an extra bit is all you need.
It is now 10 days since my last attack  - can I get through new Year too????? Watch this space lol! Left grommet is currently blocked so tried to access ENT emergency clinic today but it was full of people who'd been boxing on Boxing Day! Will have to see what my GP can do about it.

Elaine xx

Offline auralie_shaw

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Gent treatment on Tuesday
« Reply #42 on: Dec 30 2003, 10:29 AM »
Hi Alec,
I had streptomycin treatment in 1988 to destroy all vestibular balance function.  Prior to the treatment, I played video games that 'moved' so as to train my eyes to ignore what thought was happening.  While in the hospital while receiving the last injections of streptomycin (I was being closely monitored as I had hearing still), I began physical therapy to learn how to walk again.

The last days before the last shots, I walked with my legs wide apart, much like a baby in a diaper  :P   Then I did 'wall walking,' where I touched anything upright.

It all passed.  I worked steadily for ten years after that.  I had to retire on disability in 1998 because of synergistic physical conditions.  But not the Meniere's alone.

The doctors' comments were plain:  no scuba diving, but other than that, do anything you want.  I did get my life back.
Peace and blessings.

Anonymous

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Gent treatment on Tuesday
« Reply #43 on: Dec 30 2003, 06:55 PM »
thanks very much for  such an encouraging story.i am in the process of being referred for gent treatment,and i have to admit to being a bit sceptical.hope you have a wonderful new year :lol:

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Gent treatment on Tuesday
« Reply #44 on: Dec 30 2003, 06:56 PM »
sorry i meant to say,you had given me a very positive feeling.thanks

Offline Alec

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Gent treatment on Tuesday
« Reply #45 on: Jan 02 2004, 12:04 AM »
G+9

Still no change. No more attacks but also not much sign of becoming more unsteady which I was expecting if the drug worked. I think my hearing is down a bit but hard to be sure.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline auralie_shaw

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Gent treatment
« Reply #46 on: Jan 02 2004, 02:09 AM »
The Gent treatment does the same as the streptomycin treatment, only with a more direct approach.  I wondered why it had not been suggested, but have since found that if a fair amount of hearing is present, streptomycin is more easily controlled and monitored.

That said, 9 days is short.  I went through a time when I wondered why I was continuing to be poked with needles.  I was no better and no worse.  But, as if in answer to my question, the next day I was quite unstable and had trouble doing anything in the kitchen.  So frozen fish sticks and frozen french fries were what I served my sons for supper.  The cookie sheet was quite large enough that I could manage to find it with one eye shut.

May you soon have that happy moment!  <grin>

Peace and blessings
Peace and blessings.

Offline Alec

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Gent treatment on Tuesday
« Reply #47 on: Jan 03 2004, 12:46 AM »
G+10

I had an attack this morning. Not a bad one but I did need to lie down for about an hour. I think I will need at least one more injection, maybe two.  :?
Alec (forum Moderator)

Whenever I hear the term, 'let's go for a spin', it makes me cringe.

Offline Elaine

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« Reply #48 on: Jan 03 2004, 02:06 PM »
Sorry to hear that Alec.
I feel a bit wobbly today too -maybe it's the weather again  :cry:

Elaine xx

Offline our lizzy

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Gent treatment on Tuesday
« Reply #49 on: Jan 03 2004, 02:57 PM »
Hi Alec,

Sorry you are going to need some more Gent. I know it must be disappointing for you especially as it isn't too pleasant. Are your attacks any less than before you had the injection?

Lizzy
It is always darkest before the dawn!