Pain pumps.
 

Hi,

I see my PM dr tomorrow and am going to approach him about a pump. Has this ever been done before with ketamine that anyone knows? Just after the last severe hit from RSD the DBS is sounding more and more like something that might not be able to happen, so want to go the Neurosurgeon with every option possible.

So, any of you (apart from Hope - who I PROMISE I will PM back) got one? are they any good? how bad is the surgery?

I am tempted to leave all surgery alone, but I know I cannot continue with my life this way and if there is any way to reduce the pain and spasticity then I am, probaly, willing to try it. (I react INCREDIBLY badly to operations, even needles, the EMG made my RSD a million times worse and after one nerve I had to stop, so the thought of an op is pretty scary).

So, any advice?

Thanks

Frogga xxxxxx

Ketamine pump used successfully
 

Frogga - Maybe this Abstract can help persuade your doctors to give it a try? Authors' contact info provided at the end. I might be able to get whole article if you want it. - Molly

Successful use of ketamine for intractable cancer pain. Lossignol,D.A.; Obiols-Portis,M.; Body,J.J. Supportive Care in Cancer.13(3):188-93, March 2005.

GOALS AND WORK: Despite medical awareness, intractable pain is a serious problem in cancer and occurs in up to 2% of advanced cancer patients. However, few data are available concerning the optimal treatment of such patients. The emergence of intractable pain may notably be due to the activation of N-methyl-D-aspartate (NMDA) receptors located in the central nervous system. NMDA antagonists might thus be an interesting approach in such pain syndromes. PATIENTS AND METHODS: Twelve patients with intractable cancer pain received a test dose of 5-10 mg of ketamine, a strong NMDA antagonist, in order to determine their response and tolerance to the drug. Continuous intravenous infusions of ketamine associated with morphine were then administered. MAIN RESULTS: The acute test dose was successful in all cases (VAS <3/10 after 5 min). The prolonged use of ketamine allowed us to reduce the total daily dose of morphine required (range: 200-1,200 mg) by 50% and allowed eight patients to go home with a portable pump with morphine and ketamine during a relatively long period of time (range: 7-350 days, median: 58 days). Side effects were moderate (dizziness) and they were limited to the test phase. CONCLUSION: Our data suggest the importance of NMDA receptors in the genesis of chronic cancer pain and indicate that NMDA antagonists should be further studied for the management of cancer pain and, in particular, intractable pain.

IN - Institut Jules Bordet, Clinique des Soins Supportifs et des Soins Palliatifs, Service de medecine interne, Universite Libre de Bruxelles, 1 Rue Heger Bordet, 1000, Brussels, Belgium. dominique.lossignol@bordet.be

Safety and efficacy of prolonged outpatient ketamine infusions for neuropathic pain.
 

Here is another study demonstrating positive outcomes, but this study shows success in long-term use in patients out of the hospital (the study i posted earlier was ketamine in patients in the hospital, intended for shorter-term use). - Molly

Safety and efficacy of prolonged outpatient ketamine infusions for neuropathic pain.

Webster LR. Walker MJ. American Journal of Therapeutics. 13(4):300-5, 2006 Jul-Aug.

Abstract Ketamine has demonstrated usefulness as an analgesic to treat nonresponsive neuropathic pain; however, it is not widely administered to outpatients due to fear of such side effects as hallucinations and other cognitive disturbances. This retrospective chart review is the first research to study the safety and efficacy of prolonged low-dose, continuous intravenous (IV) or subcutaneous ketamine infusions in noncancer outpatients. Thirteen outpatients with neuropathic pain were administered low-dose IV or subcutaneous ketamine infusions for up to 8 weeks under close supervision by home health care personnel. Using the 10-point verbal analog score (VAS), 11 of 13 patients (85%) reported a decrease in pain from the start of infusion treatment to the end. Side effects were minimal and not severe enough to deter treatment. Prolonged analgesic doses of ketamine infusions were safe for the small sample studied. The results demonstrate that ketamine may provide a reasonable alternative treatment for nonresponsive neuropathic pain in ambulatory outpatients.
Institution Lifetree Pain Clinic, Salt Lake City, Utah, USA. lynnw@lifetreepain.com

Pumps
 

Hi Hope - you're absolutely right, Thanks for making the difference clear. I couldn't find any articles at all where ketamine was tried in an intrathecal pump. :( I picked the closest procedures I could find where ketamine was delivered long-term on an outpatient basis and safety and efficacy was observed - so at least frogga could try to persuade a doctor to give it to her through an intrathecal pump.

Hi Frogga sweetie,

Just a quickie- yes, here:

This was the first one tried in 2001, successfully:

http://www.anesthesia-analgesia.org/...full/93/4/1032
© 2001 International Anesthesia Research Society
PAIN MEDICINE
The Long-Term Antinociceptive Effect of Intrathecal S(+)-Ketamine in a Patient with Established Morphine Tolerance
Abstract
IMPLICATIONS: Our report describes for the first time the continuous long-term intrathecal application of S(+)-ketamine in a patient with chronic pain and morphine tolerance. Intrathecally applied S(+)-ketamine led to a significant pain reduction and consecutively reduced the doses of intrathecal morphine required for pain relief even several weeks after the cessation of the 24-day period of intrathecal S(+)-ketamine administration.

Then go to: http://www.ncbi.nlm.nih.gov/sites/entrez
and put in a search for ketamine intrathecal. Among the rats and what-all they've tried it on, there are some entries for people too :wink:

And found a small blog entry (have to search intrathecal on the page) that shows it is being used privately, rather than for the several-day infusions.....
http://www.mylot.com/w/discussions/1153257.aspx

If there's that, there'll be others...just run out of time,

all the best :hug:

Thanks!!

Mollsy and Artist - the articles are brilliant - I will be taking them in with me! I am hopefully going to persuade him about just trialling the device even if it doesn't work then at least I'll know. Also, I know if I had a pump I could tolerate higher doses of baclofen without the horrific side effects I get which might help spasticity.

Hope - thanks so much babe!!! I will be citing you as an example to them...

Going to argue my corner - so, fingers crossed!!

Love

Froggsy xxxxxxxxx

Heya..

Well... I saw my PM today and he was very blunt as he said there is nothing he can do for me at all, and that we both know he can't cure me and we both know that he can't make me better. We decided to retry some nortriptylene.. oh well! It doesn't work brilliantly, but if I could get more than my max 3 hours then live might get slightly easier.

I have a referral to discuss the pump!! My PM doesn't do them and he doesn't know know if it will be able to help me, especially with the reactions I have to surgery but at least it's something!!! It will be good to know if it will work for me and whether it's something that could be done. Their issue is they are concerned that it won't help with the spasticity enough..

What got to me though was that someone I know who is 19 and has RSD saw him just before me and was being prescribed DMSO etc but they won't prescribe it for me because of the amount of damage I've got or something.

Yet, this girl keeps going on and on and on about not being able to do anything she can WALK, she can use her arms. Oh no. She can't do sport anymore but still plays the clarinet. I was so frustrated and ANGRY that I saw her last night and she was walking fine, totally flat footed and totally normally - no limping, no nothing, YET she turns up at this appointment in a wheelchair without any shoes on and with both of her hands in "spasm" (until she got engrossed in conversation when they, of course, relaxed). I know I'm an evil b**** but that really got to me. (I considered slapping her yesterday when she said she needed to work on her transfers - er, she can walk! and stand! and do stairs! WHY do you need to work on transfers? you can stand and walk without crutches!!!! no idiot is going to hoist you or give you a sliding board, but then realised I can't slap her so just growled instead).

Ok. Feel abit calmer now. I'm not saying she doesn't have pain or that she doesn't have issues with mobility, it's just very frustrating and some days it feels like she is competing against me - which, lets be honest, she has lost before she even started. Why can't she be happy with being able to move around? Why is she apparently jealous of me???? AGHHHH!!!!!!!!!!!

ok. breathe.

...and again!

Love ya

Froggsy xxxxxxxxx

PS... He asked for all the articles you guys found!!! So, just sent them to him.
xxxxx

LOL Rogue....

I know that everyone gets RSD differently and that it is probaly harder for people who don't need the wheelchairs/ crutches etc because they look "normal" so people respond to them as normal, and never think "oh, that person is in pain".

I just cannot stand liars - and to see the change in 24 hours from someone who ran up and down the stairs no problems, walked around totally normally and wasn't using crutches or any support to meeting her in the clinic and seeing her stooped over in a wheelchair, both her arms on her lap, both feet shoeless. It just got to me big time!! So the dr now thinks she can't walk or do anything - but yet, what was her plan when she left the PM clinic? to go to an hour long clarinet lesson - despite the "inability" to open her hands - unless talking. Maybe they now have clarinet thumping sessions?

I guess with me it is jealousy and anger. Anger that she wants to be like me. Jealousy that she is so much more mobile than me. Frustration because I know I cannot change a single part of this myself. I am just yet to come up with a polite way of saying "sod off and get on with your life". I guess as I've got older my ability to be handle misery mates has gone. Yeh, there are times I want to be miserable, that I want to moan, that I'm fed up, but I do try to get on with it or work out ways around the issue, because in the end, misery mates just make this all worse!

The stupid thing is, that if she is trying to communicate with me she is making a terrible job at it as I just ignore her when she acts out.

Hope you are feeling better soon babes!!!

Love ya

Froggsy xxxxxxxxxxxxxxxxxxxx

Frogga,
Can't say as I blame you feeling like you do. That ummm errr geeze can't think of anything nice to call her *LOL*, that person just doesn't get it. Maybe she really likes the drugs they give her *LOL* so she fakes being worse than she is. Maybe she either gives away or sells certain of the drugs the clinic gives her since she obviously doesn't need all they give to her.

When having RSD you envy what everyone else takes for granted: being able to walk &/or look like you walk normally anyway *LOL*, go up stairs, etc etc etc. I don't mean eny in the sense we are not happy for them to be able to do walk or whatever, it is just we envy the 'ability' to do those things. Then to see someone fake it, like that??? Well it is rather frustrating. To be honest it pi$$es me off completely. I couldn't nor would I want to do something like that. Heck I would give alot just to look normal when I do walk *LOL* I can't walk very far mind you, but would like to look normal when I did.

Hang in there, people like her get theirs in the end. She still has to get past the good Lord don't ya know???

DebbyV

Pain Pump USES????
 

:)Sorry....I don't mean to be stupid here, but I have been in pain for a number of years due to several failed ( Hydrocephalus) Shunt revisions. My brain has collapsed twice during these 22 surgeries, and this has left me with more pain than most people can imagine in a lifetime...but then most of you KNOW what I am talking about.
I am wondering if I am a candidate for a pain pump now? These surgeries were done in 2001-2002....and I am just miserable. Each time I get hospitalized for something else, the same thing happens, the lectures, the dirty looks,etc. I was dx'ed with Bell's Palsy last week, and the way I was treated in the ER of our local hospital was deplorable.....no one should be treated like that.I went to my opthamalogist for eye drops( the OTC stuff just wasn't working ) and she sent me ASAP BACK to the ER, and yup, you guessed it, the Dr. there was furious with me. HE did what she ( the opthamalogist) asked, another CT-scan was performed, simply to MAKE SURE that nothing had happened within the previous 24-30 hours.....from the 1st scan.
My pain in largely in my head...althoughh it does radiate down my arms at times. On a scale from 1-10, I can tolerate an "8" headache, but most of the time my head pain is much much worse. No one should have to live like this, but what can you do ?
I need help....I don't however, need some doctor ( I live in Michigan ) telling me that I need to see another pain specailist that will obviously see me, make me into an "inpatient " for 2-3 weeks and then, despite everything that each pain clinic has tried ( conventional & unconventional treatments ) the Dr(s) come in to my room,announce that they can't do anything more, and need to put me BACK on my pain meds and send me home....Is there any help out there for someone like me ? I would be willing to re-locate, I am getting tired of this. If I could find some relief somewhere..... IF anyone has a suggestion, a clinic a doctor(s) to see....I am all EARS ( and EYES ).....
Thanks so much for listening to this long and rambling e-mail......
Once again, AM I a candidate for a PAIN PUMP ? Are there cities in which some Dr. might be willing to help me ?
Thanks !

There is a pain pump and SCS forum on Neurotalk -see the link in the Sticky Threads at the top of the homepage.

Good luck to you. Sandy

My internal morphine pump gave back life
 

I'm now on my 2nd morphine pump & I can't begin to express just how much this has changed my pain management - and in all the right ways. For someone considering this option please accept & consider the following:
1: Pumps are not the silver bullet that solves all your pain problems and that you'll wake up the next day pain free. Morphine pumps are more like a very radical last resort when all else fails. All prospective patients must accept that pumps have some serious and rather annoying problems that goes with them. For those in super severe pain, these new problems are worth the hassles.
2: All patients must jump through a lot of hoops for their new 20 to 30 grand gadget that's a real annoyance in the side. They're expensive up front. Not cheap to refill & require a great relationship with your Very trusted doctor.

Even with my pump I'm still on 160mg of OxyContin plus OxyIR I take for breakthrough pain as PRN. Where you'll land is anyone's guess, but accept up front that the pump may be only part of the solution for managing your pain better. After 8 years with these hockey pucks in my gut plus the knot on my back I understand the drawbacks yet I'm thankful each and every day for this technology that helps manage my pain levels bested than ever. You might experience the same too. Insure hope so. Now go get the test & see if this is an option that can help you regain so much more of your life that pain sucks away. Best of luck, Bob

Pain pump surgery
 

Dear Frogga
I know about pain pumps not sure about the med you are talking about ketamine" I assume that is a medicine but I have had my pump for almost 5 years and it has changed my life. before I could do almost nothing because of the pain after laying in a bed for five years my doc offered me one and I took it. He has a clinic next to his office does the surgery there. All his staff so no hospital stay that was a good start. I hate surgery after having five in a row I swore no more. But that is not the right mind set this is not surgery hoping it is going to help the situation after passing the trial you will know if the meds work then they will implant the pump. It took them less than 30 minutes to do the implant I was under did not feel any pain recovery was not bad for me because it only took a couple of days where my other stuff took years. The pump has given me back to me. Now I do not dwell on pain because there is none. When I first got the pump you take pain pills too until they get the dose right for you which can take a month or two but i had relief as soon as I woke up the adjustments of meds is for detail they do not want you to have any pain. That is there job! You can ask me any questions you so desire and I will give you the truth but I will say to stop the pain I would had done anything I have been in pain 18 years with the pump only five of them. I can do so many things could not do before. Do your research and feel comfort when you make your decision. You will have a trial run to make sure they have a med that will work it is done in the office/clinic lasted about four hours if it works they will schedule time to implant it is on the left side of my stomach out of the way of blue jeans many times I forget it is even there it is so small all I do is go in and get it filled when my time comes up takes 15 min's to do then I am out the door in the sunshine. I am going to watch over your post to see what you decide because it is your decision. also remember you can email me if you have questions.
Later
donnieJ