Seven days in the hospital...

Clearwater AL

Extremely helpful member
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Joined
Aug 28, 2013
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2,932
Reason
PALS
Diagnosis
12/2018
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State
NC
City
Get Real
I’ve been in the hospital (first step down from ICU) in the NeuroScience
Department for 7 days for a severe a headache. So bad I was incapacitated
I had to be taken the hospital by ambulance.

I had brain fluid leak which stopped on the third day in the hospital which
changed the approach. The headache persisted so they put me on morphine
intravenously every three hours along with what they called a “cocktail”l
of three additional pain suppressors.

Long story shortened… they did two Occipital Nerve Block shots in the
back of my head. They told me it was going to uncomfortable ( which
really means you’ll remember it for a long time ) It was but they felt
it was the last resort sort of some kind of dangerous surgery which
would require ventilator and with my ALS it would have to stay. My
directive I chose not to.

Well.... the Occipital Nerve Bock shots worked. The pain of the shots
was worth it. I was lucky.

Gotta note this, reviewing all the Could This Be ALS I missed I did noticed of
all the 20, 30 and early 40 year old trolls… none of them were closed but some
got 12, 18 and 22 replies. Not once was a referral of how rare it is to be
diagnosed with ALS in those age groups. Maybe I’ve missed it… it is
not rare in those age groups anymore. :)

Anyway I’m home recovering but… I tried hard to stay mobile with my
rollator but this event took a toll on my legs being in bed ( one of the beds if you
try to get out of an alarm goes off ) for 7 days so its on to the PWC.

But.... glad to be home.
 
I am so sorry you had to go through this Al. Very happy you are back home. As you say it is hard for us to recover from things. Wishing you the best
 
So sorry that you experienced that. I'm glad that you were able to get relief. Those beds with alarms are annoying for sure when I was in the hospital last year they put that alarm on so I wouldn't get out of bed. I'm glad that you're home.
 
Al, That sound like a horrible experience. I'm glad you're home.
 
Again… back home again after a one night and next day stay.
The clear fluid running out of my ears, nose and eyes started again.
They called me in for a spinal tap.

They did their sales job again, “it’s not that bad” – “we’ll numb
the area real good” – “ you’ve probably had back aches that were worse”,
Seeing in your record the number of nerve block shots you’ve had on
your lower back.” He got three good vials.

It’ll be a while before I sign the papers for that procedure again. :)

All three vials came back clear. They are referring me to an ALS
familiar ENT specialist. I told them if at all possible I want Wake
Forest.
 
Sorry Al. Can your neurologist help with the referral? Particularly when they said ALS familiar it seems as if you should see the specialist your neurologist recommends
 
Thanks Nikki.

I haven't got the hospitals referral yet so...

I've already sent communication to my Neuro... waiting to hear back
from him too.

Side note... Hospital gowns. If you ever spend a week in a hospital
forget about modesty. I refuse to do number two in a pan under
me so the nurses had to walk me to the commode. I got using the urinal
jug down pat but I need help with that too, in a bed if you just put a leg
over the side the alarm goes.

I had great nurses, 7AM to 7PM. One about 3AM came to give me
my pain shots... she is studying to get her commercial real estate license.
We talked about 20 minutes. A couple other nurses too talking about
ALS.

Ok, I'll get off... gotta take my second round of meds, hope they let
me get good sleep
 
Al, I'm so sorry that you're having to go through this again. I hope that your referral comes through quickly so you can get to the bottom of the problem and get it taken care of.
 
The hard part has come. Nobody wants me to drive anymore.

When I was 14 my father started me in the go karts, I did some
drag racing and then a Sportsman Modified stock car until I
just couldn’t afford the money and time any more. My job,
family came first. Driving is/was a second nature to me,

So. just getting in the car and go somewhere are over. Now
I have to wait till Ann can carry me to the store or wherever.
And she does the speed limit, uses the signal light, when
nobody is coming or behind us. When we are on an open road
where the speed limit is 55 that’s what she does,
I told her the police here will give you 10 mph… nope 55,

So I just search our Sirius XM car radio for interviews, like
Howard Stern (not some of his shows) and the political
channels and the NASCAR channel. I put the speakers on
just my side.

I knew the day was coming… but not this soon.
 
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I am really sorry Al.
 
Geeze... now I'm hearing it about the riding lawn mower.

Whatever....
 
I'm sorry, Al. I can still drive but I can't walk far so why do I bother. It was a big deal this morning. I took my light PWC out to the car, got in and drove 1/4 mile to Publix. Parked in nearest disabled spot. Got out and made it to the ATM machine. Then into one of those slow carts to pick up a few groceries. My big outing of the day.

I drive like Ann. I obey all the rules, even on I-95 when people are going 20mph over the speed limit. I'm sure it pisses a lot of people off.

I've had two lumbar punctures. Actually, the one Pulley at U of FL was best. They lost the fluid before they did all his tests so I got the second one done here in Daytona. Radiologist. The needle felt like he was drilling a hole in my back. It hurt like hell and went on for 20 minutes. He said it would just be a little pressure. Right. Pulley let me drive home right away. They made me lie down on my back for four hours, during Covid, with an N95 mask on. Never again.
 
Yea... they did good sales job on me before the procedure about the 'discomfort".

But to others reading our replies... it is a very important test that can reveal so
things. If your doctors needs/wants it - it can discover the root of your problem(s).
Other diseases have uncomfortable tests too.

The two shots they put in the back of head I'll remember for a long time but
it worked

Recently I had a tooth molar taken out, it was the last molar at the back of my
jaw. It took three numbing shots before I didn't feel him tapping on it. He
commented it was one the tougher one he's pulled. After the numbing shot
wore off it wasn't very comfortable for two days.

So.... sometimes you have to suck it up and do what your doctor asks for.
 
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I have had many lps for research and by 9 different providers. Some of those I had several from the same person.
Some are better at it than others but my absolute worst experience was from someone who also had been one of
the best. Everyone has their off days

If they numb you up properly and hit it the first time it can truly be just pressure but if they miss and hit bone or a nerve
it can be miserable. But as Al says it can yield valuable information
 
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