Getting pain pump soon!

[RSD_Angel]

Morning!!

Well I have offically been told that i need a pain pump and that this is the last resort for me and my RSD. This was my docs last option and tried EVERYTHING else to no avial....

I saw him last month and said., ok.. it looks like we need to talk about the pump. he was hesitant from the beginging of seeing me that i would end up with this, but because i am so young (28) that he didnt want to put it in me because i have such a long time to live and that only adds complications on to it.. soo he said that he and i would have to try everything before we did this. SOooo looks like i will truley become Bionic. I will have a spinal cord stim, peripheral stim adn a pain pump all in my body.. and have a remote and control for each! the air ports will really love me.. lol.. one in my leg and 2 in my belly.. good lord!! lol.

I just want to know what anyof you have been through with the pump?? and what i can expect. I could have had this surgey next week but i am taking classes at my local college to try and keep my mind off the RSD pain, so i didnt want to do it in the middle of everything just in case i couldnt finish and that would be awaste of the money i spent on the classes.! So i am getting the pump january 8th... maybe by my bday (the 25th of jan) i will be in less Pain??? always can wish right!!

ok.. talk to you all later!! thanks and have Missed you all sooooo much. Hope everyone comes back!!!

;)
Amber

[Diamon Lil]

Hello Amber: I am sorry to hear that you now have to get the pump. You have been through so much already. I hope that it works for you for a very long time and that your pain disappears completely. Maybe someone will come up with a treatment for RSD in the foreseeable future. Maybe the doctors are barking up the wrong tree in treating RSD. I remember years ago the medical establishment was sure ulcers were caused by stress and a type A personality. It turns out ulcers are caused by a bacteria. I just hope someone finds what causes RSD and we all can get better.

I admire you that you are taking classes. How do you manage to sit for so long and focus with so much pain? You go, girl!!!

Regards, Lil

[coleen h]

I am so very happy and hopeful for you. I think we have spoken before. The pump is the only thing that really worked for me other than very high doses of morphine. I was on 360 mgs of long acting morphine for over two years. Yes you read that right. What can I say, I survived.

The pump has given me a new life. Instead of being bedridden, I can shop, cook, play with my grandkids etc.

I used to get 18 mgs morphine in my pump. But they switched me to dilaudid and I get 3.4 mgs of that per day. It works very well. I still have to take breakthrough meds but it's been over three years now and still going strong.

I think you'll be down less than two weeks. And yes, you will be in much less pain when they turn it on. I takes a few months to get to a steady dose that you are good with.

Good luck!

Coleen

[markdoc]

I have an old model metronics pump(8 years). It worked for a little while, 1 yr, then not so good. The insert surgery was outpatient & not bad. The reason for failure was pain doc not listening. I needed to up the dose of fent & he woudn't. It's still in me in case a new drug comes along. Now I'm on 1800 micrograms fentanyl q4h by losenge & 150 mg MSIR q3h prn. Still alive & have insomnia. Good Luck!

Markdoc
RSD rt arm 1997
Spread to rt leg after fall
Spread to lt leg, another fall
Starting in lt arm now

[RSD_Angel]

Good morning,

I am kinda scared about getting the pain pump... just the what if's and all. Did you guys have the bad headache after the surgery?? and what kind of limitations did you have after the surgery? And how long did it take you to get the meds right in your pump. My doc said that he is gonna try the baclofen adn a narcotic.. hasnt said which one, but i am on oral Baclofen and MS contin now, so it will prob be those 2 still?? I tried the fentenyl patches adn LOVED it!! it helped the best with the pain, but i am allergic to latex and it had latex in the sticky part of the patch so i couldnt do them any more.. can they put that in the pump??

Yea i am taking classes,, it gets my mind off it and consentrated on something else. I am only taking one on campus class and its only monday nites, and the rest are online classes. I will get my 2nd degree in december in Medical office management and coding... I used all my credits/classes from when i took my nursing through that college and i only needs 4 more classes to get the 2nd degeree.. soo im doing it. Its hard yes, and the professors know my situation, and understand and the classes arent that hard anyhow, soo its all good.

Well have to go .. talk toyou all later today!!

;)
Amber

[markdoc]

The surgery was uneventful for me. No headache, not much pain, it was just painful to bend over for a while. No unusual post-op limitations. I had two incsions, small one on back over spine, & the larger one in front near waist. I had morphine & baclofen 1st. Then switched to fentanyl. Fentanyl worked much better. As far as how long to get the dosage right depends upon how well your doc listens & how often your appointents are. I would do it again w/ the right doc.
Good luck!

[Rob123]

Hi, I would not get a pump because it could cause your RSD to spread and the the pain,go to Dr.Hooshmand website.You just type Dr.Hooshmand and all these different site will come up. I wish you the best in finding some kind of treatment that will work for you.

Rob

[RSD_Angel]

Hi Rob,

Anything and everything can make RSD spread. I have been through all the options of treating RSD that are out there. I have 2 stims implanted (dorsal collum stim and a peripheral stim implnated) been through trials of radio freq ablation, Botox injections, blocks, meds, epidrual infusions, PT, and this option for me was the last on the list and my doc said that from the begining, that he didnt want to do this untill he had to, bc i am soo young and having a pump at my age and the upkeep on this for the years to come will be alot. But i have gone down the list of options fast and even have waited a year to see if there are other treatments out ther to help me, bc i am willing to do anything! I just want my life back (i know i will never , but i want a more normal one, become a part of the working again)

I have been to dr. hoooshmands site and only read his stuff . Im not sure if I agree with everything thats on there, but have been there and thats all i am gonna say about that.

I think the pain pump will acutally help me alot, bc the meds that he is gonna put in them , i had during the epidrual infusions and would kill for those meds right now!! So I am happy with my decision and I was looking for people that have had the surgery to let me know what its gona be like to go through the surgey and the restritions and all.

Thanks for your post..

Amber

[Rob123]

Hi Angel, How many years have you had RSD!!!

Rob

[RSD_Angel]

I have had RSD for 4 years going on 4 1/2. I have it in my Right foot and ankle and has spread up my leg and in to my lower back and into the good upper leg.

Amber

[Rob123]

Hi Angel, Do you live in nyc or Rochester ny area? I have had RSD in my left foot and ankle for almost 23 years now and it spread up into my thigh area,I know what you're talking about with pain.The pain doctor wanted to put a column stimulator and I did not let him do it,because I read that the column Stimulators can cause the RSD to spread,and then he wanted to put in a pump,and I told him no because you to be very careful when you have the pump and watch what you're doing,it's a pain in the "butt",that's why I stay on oral medicine call Dilaudid,it takes the edge off .

Rob

[RSD_Angel]

Nope.. i dont live near either NYC or Rochester..lol i live about an hour south of Syracuse.

My doc wont give me anything stronger then MS contin for oral meds, bc hes afraid of the sideeffects and the chance of being addicted to them and them to stop working and needing higher levels and this way with the pump the level of meds is very low and wont do as much damage to my system.. I hear you about the restrictions of having the pump, but i cant really move much or bend alot any how.. so i will truly be bionic after i have the pump installed.. i will have 3 medtronics implnated.. i should be their poster girl!!lol. gotta laugh its the only way to get through the day!!

;)
Amber

[stinamp]

I'm 23. living in San Fran.

Im supposed to have some spinal cord stim surgery in december.

i have suffered bilateral RSD in my ankles following surgery 4 years ago.

any advice? from you or anyone. ill take it with a grain of salt. as i have tried PT nerve blocks and meds.

as you know. it is a horrible condition.

eventually i want to get a PHd to go into research about it, because it pretty much consumes my life.

and there arent many good books ive found helpful.
sincerely, stina

Morning!!

Well I have offically been told that i need a pain pump and that this is the last resort for me and my RSD. This was my docs last option and tried EVERYTHING else to no avial....

I saw him last month and said., ok.. it looks like we need to talk about the pump. he was hesitant from the beginging of seeing me that i would end up with this, but because i am so young (28) that he didnt want to put it in me because i have such a long time to live and that only adds complications on to it.. soo he said that he and i would have to try everything before we did this. SOooo looks like i will truley become Bionic. I will have a spinal cord stim, peripheral stim adn a pain pump all in my body.. and have a remote and control for each! the air ports will really love me.. lol.. one in my leg and 2 in my belly.. good lord!! lol.

I just want to know what anyof you have been through with the pump?? and what i can expect. I could have had this surgey next week but i am taking classes at my local college to try and keep my mind off the RSD pain, so i didnt want to do it in the middle of everything just in case i couldnt finish and that would be awaste of the money i spent on the classes.! So i am getting the pump january 8th... maybe by my bday (the 25th of jan) i will be in less Pain??? always can wish right!!

ok.. talk to you all later!! thanks and have Missed you all sooooo much. Hope everyone comes back!!!

;)
Amber

[frogga]

Hey Amber

thats where I am too. I have had RSD for about 4 1/2 years after an accident when I was 16. It spread from right arm and is now full body, so I'm in a wheelchair and can't use my arms (I developed complications with the RSD and developed seconday generalised dystonia meaning that I am effectivly unable to move my arms/ legs and ALSO have the pain and all the symptoms from the stupid RSD).

I have had botox/ lumbar sympathecit blocks, gangion blocks, infusions of pemidronate/ 2 sympathectomies (chemical and surgical), tried every drug out there............................................. ......

however in the UK they don't do pain pumps really (well not for RSDers anyway). I got reffered for SCS's but can't have them because of the RSD - as it would be a non healing thing.

What meds are going into the pump? atm I am on ketamine, diualad ( i think - trying to give the american names for stuff!!), diazipam, benzhexol (triphenylstuff...). baclofen and other stuff. ketamine is the most useful med I have found. However - I saw my consultant the other day and she has told me there is nothing more out there that I can try (in the UK. obviously) and that I just have to get used to life like this. But it's not that easy....

LOL oh well.. i suppose I'm not doing too badly - I started uni 5 weeks ago and apart from the RSD being a stupid really painful no concentration git I am loving it (oh and having to get used to carers :S :S :S)

Oh well..just wanted to say that I'm pleased they are doing something about yours and that the meds helped in an epidural!!

pain free hugs'!!
Rosie ***x