Well back from my Lido drip. I made it through okay. I have a bit of metal mouth, but I had that before I went and then also some dizziness when I was having the infusion, so they slowed it down a bit.

I won't know for a few days whether it helps or not. It's one of those things that some poeple get instant relief, some have it after a few day and some it does nothing for. I am hoping it helps because if it does, it means I can have this instead of the shots in the head.

My Pain doc also gave me a bit of a different morphine perscription-one that is longer lasting than the ones I am on now, seeing as I had an allergic reaction to the fentanyl patches. She also mentioned something about the ONS trial leads again, but at this point, I am not even thinking about it. It's like this carrot being dangled just out of my reach and that frustrates me, so I am not paying any attention to it and maybe it will work out if I ignore it. At the very least, if I stop hoping it will happen, I won't be disappointed if it doesn't.

Anyway, that's my report for today. Oh and the lido made me far too sleepy to watch any dvds, so I ended up turning it off only part way through. Oh well!

Okay, I'm sending major positive vibes your way in the hopes that this brings you some relief.

On the DVD topic, at least you were prepared even though you couldn't watch. I find it interesting that the lido put you to sleep. Did they offer any explanation?

Take care and Ellena

I had a morphine drip . it was to see if the drug would help at all if it did i was to get a morh. pump implanted in back of head . when i had that done I was in hosp with neuro and pain doc. i got metal taste in mouth things got all echo sounding they slowed the drip big time I still had the pain then i kinda passed out and was in and out of it and the morphine i.v. drip was considered not to help. and well ya all know what the last option was and I wont mention it P.G.
maybe it is good idea to not think and dwell on it day after day. But I will be praying silently and often for you.

I have talked with destiny she got the o.n.s. her infection still with her and is i.v. anti biotics. cant use o.n.s. right now and has to wait for infection to leave before she can use the stim again.

I sometimes wonder why doc implants durring cold and flu season .

positive wishes and low pain to you P.G.
PEACE
BMW

oh yeah I need to say that I do not have o.n.
I have t.n. and anesthesia dolorosa that is what my P.E.N.S.
is for. I know that Jaime and Ellena know that already but the readers and lurkers should know and not have wrong idea or something.
PEACE
BMW

Hi Guys!
Umm..I don't know why lido makes you sleepy, but it does when it's an infusion. I don't have that same effect when it's a shot in the head. Weird eh?

I am trying to figure out HOW if I end up having lido infusions regularly where I go in to the hospital to get it put in and then go home, HOW I will make it home. I won't be able to drive because it makes me sleepy and dizzy and I would probably have to take the bus and the train (2 busses and a train switch part way to another line) without fallin gasleep, getting dizzy or getting disoriented. The hospital is across the river and when I would get off the bus, I would have to walk about a block to the hospital. Can't ya just see me?

DH works and would not be available to drive me weekly (if that's how often I would need to go-I have no idea) and any of my friends who drive all work f/t. So yeah, it's a bit of a puzzle how this would work....a cab would be $60-$70-ish each way so that's not an option.

I suppose I should cross that bridge (literally! Ha!) when I come to it.

Burntmarshmallow Destiny got an INFECTION!?!? YIKES! That's VERY scary! I will keep her in my prayers. That is one thing I've thought about because for me, it would be disasterous-I am allergic to everything but Cipro so I could NOT get an infection. Also, with having MS and taking meds to stomp down my immune system, I would have to be so very careful.

I think you are right-doing surgery during the most germy part of the year seems foolish. But I am also wondering if she was exposed once she got home-like did she have lots of people popping by to visit and maybe that's what happened? I suppose her exposure could have come from anywhere, really. Hospitals are the best place to get sick.

Thanks for all the kind words and checking in. SO appreciated girls. You guys are very sweet.

Oh and I forgot to mention I went to fill the new script and it turns out my doc wrote it wrong. She asked for mgs. in the odd numbers and this drug only comes in the even numbers. The pharmacist couldn't fill it today-she has to get ahold of my doc and figure out what she wants. She always seems to ask for oddball numbers. I don't know why. If it's not sorted by Thursday, I will let her know and have her call while I am there so they can get on it.

Today I have taken less of the morphine, so maybe the lido is helping. Tonight, I am having shivvers and then my cheeks are hot, so not sure what that means...usually if my face is pink, I am not well...but like I said, I am pretty tired today.

PG
Yes I was chatting again with Destiny last night and she had to have o.n.s. taken out she is on i.v. antibiotics 2 times a day for 6 wks I think .She turned in a letter of resignation . The nurse told her it will be about a 4 month process before she can have o.n.s. put back in. Destiny did say that even with infection it worked very good. but cus of the leads and possible leak with infection it had to come out.
She a teacher and loves hugging kids and kids like hugging her... so with stiches back of head ,neck etc I think it was easy for infection to come . but Like you I will keep her in my positive thoughts and prayers and in 4 months I pray the o.n.s. will be in and working.

PG I was lucky to have stay at home sister who drove me to apts and such. Maybe you could ask the hosp or doc if there is an option for you to get ride back after lido drip. maybe they have a bus or service that has an aid to help you . maybe a neighbor or other family member . I know it is frustrating to have to figure out getting from point A to point B. and I pray there will be an easy speedy solution right around the corner for you.

I hope the med mix up is fixed a.s.a.p. they should be able to do that with a simple phone call so I pray it is fixed when you read this!
Take nice hot/warm bath for shivers and stress. that helps me.
even just soaking my feet the heat distracts from the pains of my face.

PG. keep us posted cus we care and we have you in our prayers and thoughts
PEACE
BMW

SHE HAD TO HAVE IT OUT?!?!? Oh my goodness! I can't even imagine! Her poor body! It's one thing to go through the implant once and get through healing, but to have it then explanted, heal and then reimplanted! I don't know that I would be brave enough...then again, I do understand how it is to desperately want the headaches gone or at least tolerable, so I suppose I'd somehow suck it up and deal.

WOW is about all I can say. I am stunned. I feel so badly for her. That's alot to be going through. THanks for letting me know. I will go over to the other site later tonight and leave her a note.

Hi Gang,
Went for a follow up appointment with my pain doc this morning. She decided to do another drip so she set one up right then and there. LUCKILY, the problem I was worried about about getting from hospital to home with the drip worked out.

There is actually a clip on the line between the bottle full of the infusion and the point where it enters my arm. All I had to do was set the clip to keep the infision from running till I got home. It worked just fine, so this means I can go in, get the infusion set up and then drive home with it clipped. YAY! I knew somehow it would work out.

So, it's running now. She said if I get dizzy, just to clip it for 10-15 minutes and let it subside and then get it running again. So far, I have to say this is by far a better option than getting a shot in the head evert week. Less painful! THe only thing I have to be careful of is that the balloon that holds the infusion is latex and I can be sensitive. So far it's okay and I don't have the breathing (anaphalactic) reaction to latex, thanks goodness!

If anyone is exploring Lido drips, I can tell you it's relatively harmless compaired to some of the other things I have been through. I can't say it's worked wonders yet, but my doc wanted to see if doing it a few times would have an impact. I am willing to try that theory out.

That is awesome news PG . I am So glad you were able to get the drip AND back home safe ! It is really neat how you have a clamp/clip to "work" the drip . Make sure you take it easy ,sit/lay down when you are doing it dont want you falling or anything . I bet this is going to help you with the pain. I think I will message you.
Make sure you take care of yourself. Tons of low pain wishes.
Keep us posted when you can.
PEACE
BMW