latest from lostmary
 

Hi all
Well, I say my PM dr/nurse last week. They gave me a 30% increase and I'm doig great. I spent last Fri/Sat/Sun shopping all day, running around, eating out, and I'm back to cleaning ALL the stalls, brushing the boys, throwing the ball for the dogs and starting to clean the house. I feel so much better with the increase. The Dr and how aggressive they want to be with the meds determine ow fast the pump will work. My dr. wanted to be more aggressive as the first 10% increase didn't do much. I was feeling so much better after a few hrs of the incrase. My garden is now ready for planting, which I will start in a couple of weeks. I just want to make sure we don't get another hard freeze. The pump is go wonderful. It's safe (as safe as any surgery can be) and it controlls the pain feeling. I was thinking of the Ketamine treatment, but I don't like the odds, and I don't want to be in a coma for 5 days. Dr. S wasn't an option as he either says that you have full body rsd and you need Ketamine, or he says that you don't have it, or bad enough to be treated and he sends you away. I think he's in it for the money and fame. He doesn't seem to treat anyone who can't do the treatment. Same with scs. The drs. do that because it's money in and then they are done with out. I know...I've had 2 of them. Well, enough of my soap box. sorry about that.

Hugs.
Mary
:grouphug:

Thanks for the update Mary. You will always get my attention on your well being. My wife had ketamine treatments several times with no luck, she had hers at GW Hospital in DC. Well today here in Springfield will be sunny at 70 degrees so your weather may top 75! Have a great day.

jim

Dear Mary,

Your story brings a smile to my face every time I read it. Thanks so much for taking the time to keep us updated. Its so important that we hear the "good stuff" once in a while! I love it!!

Do you think the pain pump would be a problem if you are really thin? I have heard that the batteries for the SCS are pretty heavy and bulky, but how about the pain pump? Is it the same? I have lost a tremendous amount of weight since becoming sick, and currently fit into size 2-4. There really isn't a lot of available flesh on me for any spare parts. Where is your "pump" implanted? Does it stick out? Can you feel it?

And one more question - is there a way they can get the pain pump to take care of head pain? Do the leads reach that far up the neck? That's where the bulk of my problems are. I can deal with the pain just about everywhere else. Its when my head feels like its going to split into pieces that I just can't deal....

I am planning to try ketamine. But could use a plan B if that doesn't work....and I know my doc in Boston does pain pumps.

I am very happy for you!! Take care, Love Sandy

Hi Mary, SO HAPPY for you!!!! I too have often thought of you, you so wanted to take care of your horses and of course feel better.
Appreciate so much the encouragement from your success. Take care, loretta with big hugs:grouphug::grouphug:

Oh Mary!!!
 

THANK you so much for these updates! It's such a beautiful day here! After reading your post I'm gonna head straight out to my horses and give them each a 'long overdue' hug!!

This is answered prayer you know! God is good!

I really wish these pumps were more available to pts!! It seems like docs just wanna push the SCS and send the patient on their way!
Your story needs to be heard by so many people!
It alarms me at how much the docs are pushing these SCS's!
The risk of RSD spread w/SCS is so high! The pump doesn't have such a risk am I right?

You are a complete gem to this forum Mary :Heart:

Sandy,
the good news is that is can help your back and head area. There are no leads, just a cath. from the pump into the spinal fluid. the drugs go into the fluid of the spine, and coat/cover the nerve endings that are in the spine. SO it works with almost any pain that has to go thru the spine to get the brain. It will not work if you break your leg. You will know it. The amt of med. going into the pump is abt 1/300 of what you would take orally. It is so small that there isn't extra to go all over and coat nerves that don't hurt. When you get a new pain ie broken bone, those nerves are going to let you know as it's not set up for something like that. Its a little more complicated then they way I'm explaining it, but it is close. My mind is no longer foggy. one thing I have notice is that it hasn't helped my typing any.lol...I'm glad everyone can read what I type.

The pump is about the size of a hocky puck. mine is in the back and it sticks out just a very small bit. Most of the people get it in the belly. You don't have to be heavy to get it. I know quite a few who are on the thin side. I saw some pics of others with the pump and that was the reason I didn't get it done for almost a year. Then the pain started getting worse, my meds were going up, and it didn't look as if I would have much of a life. My dr. said that he would do Ketamine, but he didn't like messing with the brain cells that way. He also does just meds, or the scs. for him, it is what works for you, not what he gets paid from the companies. The pump area in my back is still tender, when I ride in a car I still put a pillow behind my lower back just to keep the skin from rubbing on the back of the seat when DH turns corners or hits potholes. lol..I'm going to call my PM and see if he wants to hire me to work part time in his front office. He said he did when I healed enough. I fill like I'm ready to go. Ask your dr. as I said in an earlier post, a lot of drs. don't do the pump due to the long long long (almost until you die) relationship he must have with you inorder to adjust your meds up and down depending on how you are feeling.

Let me know what you think. You can pm me and I'll let you know some more info.

Hugs
Mary

Rrae,

How are you doing. I've been soooo busy running around and being busy. I actually have to hold the reins in so I don't do too much. I've been brushing my boys trying to get their winter coats off of them. As soon as it dries up a bit (actually a whole lot) I'll be riding again. I'm hoping within the next couple of weekends. keep your fingers crossed. I know what you mean about the scs. After going thru everything that I have with both the scs and pump, I have to say both scs caused my rsd to spread. With the pump, I don't think so. I do have one area in my right butt cheek, where the battery in the scs was implanted first surgery, that hurts quite a bit. It has gone down with the 30% increase last week, but I know that we will have to up it more to try to tame the pain there. Besides that, no other problems. Any surgery can cause it to spread, but as the meds are going right to the spinal fluid, any spread would be taken care of by the meds so I wouldn't know it. With the scs, yes it spread, and with that we would have had to move the leads to get it to work where it spread. I think the pump way is the way to go9.

Hugs
Mary

YAY for you!!!!!

TY
 

Thanks for the update- It is giving me some much needed hope!!

Do you think the pain pump would be a problem if you are really thin?

i havent been here in awhile due to all kinds of things. but to answer your question. I am 4 10 and 95 lbs and have had my pump for 6 yrs with no problems. the only thing that you will have to get used it that it does stick out because the pumps full weigh 7 lbs and it depends on which pump you get as mine is the large volume one .

Carrie