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

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

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

Hi Molly,
That was a great article. I hope people get a chance to try this for pain control.
However, it addressed IV morphine and ketamine which is very different than an implanted pump. I just wanted everyone to be aware of the difference. I've never heard of Ketamine used in an intrathecal pump which places medication directly into the epidural space. The medication given this way is 100 times stronger than taking it orally. I hope this clarifies the difference. Hope

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

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

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

Frogga, you'll run across plenty of peeps like her in the future. There are many of them, lol. She does have rsd, so I feel pity for her... it's not fun for anyone. I am not in as bad a shape as you are, not by a long shot.... but that doesn't mean I don't hurt, or that I don't get frustrated by my limitations. I fully realize they aren't as bad as yours... I don't have the inner strength to deal with all the junk you do. But no, I wouldn't sit in a waiting room and complain to YOU, no way, no how.... that would just be stupid... and she shouldn't either. I've known folks like that in my life, and it usually turns out they are just trying to become "friends in misery"... she probably wants to have you to talk to, and is comparing notes to show you that she is in the same boat. She's doing it verrry badly, of course, but her motives may be pure. (My ex mom-in-law used to tell me ALL about Jim's ex fiancee wishing they were back together... I thought she was wishing it too, and it hurt my feelings very badly. Turned out, she thought it would make me feel GOOD to hear that others wanted my hubby... so, pure motives, horrible delivery.)

You just have to accept it and move past her. She isn't worth a single one of your spoons. But for a touch of fun, next time make up something totally bizarre and hope she tells the dr. she has it too!

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