Just a thought -intracathecal pain pump

[MakinIT]

does anyone out there have an intracathecal pain pump? Since my Spinal Nerve Stimulator was such a disastor, I need to look at another option. My doc kinda of brough up the pain pump, wants to talk when I'm "recovered" from this disappointment......anyway..if anyone has any thoughts on this, please let me know...Thank you...

Tracey

[ICNDonna]

I have seen posts about pain pumps. Hopefully you'll hear from some who have them.

Hugs,
Donna

[rachelm]

Tracey,

I'm sorry I don't have any personal experience with the pain pump but I did discuss the option with my pain dr. I always hope for the best in each new treatment option while at the same time educating myself of other steps to take if and when one treatment doesn't work again. At my last pain dr. appt. I asked him what I would do if my interstim quit working for the pain and spasms. I thought we had previously discussed doing a more invasive neurostimulator like what you had the Synergy or ANS but he seemed to think that if the interstim quit working that he didn't think the others would either. He said hopefully we won't need it but he would probably suggest the pain pump if my pain got worse. He said the nice thing about it is that it delivers the narcotic directly to the nervous system at the parts most affective at a fraction of the dose taken orally or through patches. This helps you not become as tollerant to it at higher doses and it seems to have a much better pain reduction than other pain treatments orrally or in patches. I think it's another one of those options that you have to research and weigh out the pros and cons carefully. I think it's completely reversable but I'm not sure of the risks. Medtronics site has a link for pain pumps if you haven't visited yet.

I hope that you find something that will reduce your symptoms some and help with the pain. Please keep us posted.

Rachel

[Dixiefireball]

i'm sorry i don't know much about it either.
i have also read post about it but dont know enough about it to get you advice.
hopefully someone will be by shortly to give you some advice.
sending you hugs and prayers
Rhonda

[MakinIT]

Thanks guys appreciate the start!! I feel like I'm back to the begininning in my illness. I hate this stupid disease. I'm feeling sorry for my self, my belly really
f..... hurts...especially since the stupid car accident and the damn procedure didn't work. I've had to take percocet more than I like, in order to reduce my pain. If I was only taking percocet, I'd be fine. But I'm taking MS Contin, valium , atarax, PLUS zenegran and trileptal for nerve pain. the percocet is "as needed" and I was fine (like once a week) until my car accident. Now I take it 1-2 times each day and that's with gritting my teeth. Needless to say, I'm sleeping Alot! I have to start school in 3 weeks from tomorrow.

ANyway...I still feel like my tailbone is on fire from the prodedure but that is finally diminishing.

I really love you guys...thanks for the help. I've been considering dropping my psychotherapist because nothing seems to work. I like him and all but since the procedure failed, meds are the pits, Pt won't be paid for anymore until October...I don't see the point in having a continual visit. Everything sucks and all I can think of doing is complaining...I don't want to just ***** and whine.


thanks for listening...

Tracey

[rachelm]

Tracey,

I'm so sorry this has been such a rocky road for you.:grouphug: I certainly know the frustration of failed procedures and sometimes you just need to be able to vent and have people validate you that it stinks right now. I will be praying that you begin to find relief and hopefully as you recover from the car wreck you will have some improvement in your IC pain too. I know it's almost frustrating to hope when you are disappointed so much so I will hope and pray for you. Will your autoinsurance pay for PT for the accident injuries? It's just a thought...

Hang in there girl. :kiss:

Rachel

[MakinIT]

they are paying for chiropractor care for my daughter and I but of course my husband is harrumphing because he somehow got the idea if we go over 400 then our rates go up. Then He got into an accident yesterday. Wasn't his fault, and he and my youngest daughter are fine, thank god. She has a very deep bruise on her liver and back so the doc gave her some pain meds because she cant' stand to be touched there.


Gotta go computer problems....my battery pack isn't working right so I'm running low on power.

bye now...t

[blue]

If you were to get the pain pump, would it be attatched to you? How would that work?

[Dixiefireball]

Tracey did you go to the er after the accident and let them them xray you to see if there was more problems caused by the accident????
if not i think you should go. it really sounds like something else happen in that accident and you need to find out what it was and get it treated.
if you need me hon you have my phone number and my email address.
I have some ideas I would like to talk to you about so hope your computer is fixed soon.
:grouphug:
sending you hugs and prayers
Rhonda.

[MakinIT]

No..I didn't go to the ER...but ok, mom I'm calling my uro tomorrow and have been in contact with my PT's....is that better? Blue: the pain pump is like those other thingys they put inside of you. Every so often, they have to refill the medication, and I'm not real sure what that entails, and very infrequently they have to change the pump. but it sure as hell beats this zombie feeling and pain. My pysch seems to think it's a good thing too.

thanks

[IcyAngel22]

T-

I think complaining helps me cope with the disease so I don't mind, vent if you need to. I want to give you some encouraging words but I can't think of anything that would make your pain or frustration go away. So just know you are among family. An IC family. Even though I'm new and I don't really know everyone I feel the love from everyone. That's what helps me. I complain alot too don't feel bad about it we all need to cope somehow. Good Luck to you.



Kristin

[MakinIT]

Hi guys

I've been futzing and fighting with this stupid computer. It is not going to last much longer BUT I managed to get it to charge up it's batttery so I can use it for a while. However it is very unreliable, which is why I'm not on the board much. Thanks for your responses to this topic. However, my pain doc decided I was too young to be attached to a pain pump. He said at my age I will be "married" to it, and never be off it. He would prefer to continue looking for other things..(I'm sure to stick in my back or up my tailbone...which is still sore)

Anyway, I'm up to my armpits in lawyer stuff.Fighting with myLTD over wether or not I still qualify. They seem to think I should be healed by now. I disagree to a certain extent. Ahem. (Like today, blood in my urine, major pain every time I peed and cramping...Happen everyso often, usually due to a "new crack" in my bladder) They said since I want to be a student I'm fine to work. I made it clear that I'm taking internet classes and that made it different. The gal agreed. Lawyers are working on Social Security. AnnnnnDDDD, phoey. I thought I'd sign some forms and they'd just take care of it..Nooooooo. Sent me home witha ****load of forms to do and records I have to get. grr.

Any way....Hope all is well with you guys....I miss ya. If I don't respond quickly it's cause I'm driving this piece of doo doo and hoping to whine enough to get a good one.

Tracey

[rachelm]

Tracey,

I'm sorry the SSD process is so complicated. Hopefully once you get all the forms in you won't have to wait for more than a few months.

I'm fairly young too (or I like to think I am...lol...31) so I hope that I don't have to go the pain pump route. I'm hoping that my interstim won't quit working on me because I'm making some career moves that are going to require me to be in better health this next school year. It looks like I'm going to get a new position as an instructional facilitator using my recent grad. training. I'll be working harder than I ever have and doing staff development but I'm excited about the opportunities that the experience will provide me. I know you are working on your masters too so that you can do consulting. I'm hoping that when I'm ready to have my first baby I can do part time consulting work with classroom teachers. I won't hear officially if I got the job until the day before my wedding next week but the principal has told me that she intends to hire me after the wait time required. I'm just praying that I can handle it since it's really my goal.

Keep me posted about your training. What are you getting your masters in? I've just started mine with my Reading Recovery training but I would like to get my masters either in curriculum or Reading. I hope that you're bladder will give you a break soon!! I've had to schedule some down time in during the hectic pre-wedding weeks because I started to flare last week. I'm looking forward to relaxing on my honeymoon and then resting up for my new job when I get back.

It was good to hear from you!! Feel free to pm me some time. I understand the secret language of teachers and IC. LOL. My fiance makes fun of me when I start up a conversation with another teacher and go into that lingo. Have a restfull summer.

Rachel

[MakinIT]

Hi Rachel

I already have a master's...it's in special ed. I'm adding credits to my certififcate so I can consult with adults working with visually impaired kids. I already know a gal who wants to hire me, like, yesterday...but don't have the correct credits......I just can't do the the requirements of my prior job....I'm between a rock and a hard place. They all figure I'm well enough togo back to work if I'm well enough to go to school ssooooo...I'm reminding them that it is INTERNET. i can wear my JAMMIES and go back to bed if I don't feel well and catch the class later.

I desperately want this resolved and soon...

Thanks...

Tracey

[littlebear]

Dear Tracey, I hope that you're feeling a bit better (and that you get all the SSD stuff worked out asap too!). Gentle hugs and best wishes, little bear

[MakinIT]

School got off to a lovely start. I had a horrible weekend and was told by my husband, doctor, and psych ...then advisors at PSU to wait until next summer. Really sucks.

Anyway...I still feel t errible. Think I"m tryiing to pass kidney stone. My Uro told me to hang tough and take pills. If it gets worse to call quickly, they'll get me in one of those bath things.

Ugh. I seriously feel as if I have a hangover...with no fun last night.

Good bye

Tracey

[MakinIT]

I really hate this f...ing computer because I want to talk to you all. My husband went out and bought my daughter and MP3 stereo she downloads music onto or CD's and plays...I know that costs as much as a laptop I want. I think this may be last note for a while. See you all when I can. Love ya.


T

[Ginny]

I am with you 100%. I got the brochure from Medtronic Mini Med on the internal pain pump. I brought it with me to my appt with a pain specialist. He said I am no where near ready to get one. He said the people getting these are on very high doses of pain medication. I am not and he is not willing to give me the pain medications.
How ridulous is this?
Ginny

[MakinIT]

I'm not sure what the heck goes through these doctors minds. I'm so medicated I can't drive. My husband wants to interview (with me) some people after his vacation because I keep getting into mini accidents. a pain pump would remove the sleepiness. It's beyond sleepiness even..I can't even describe it to people.....




good luck...T