PAIN PUMP

[kathyd]

Thanks David for responding to my questions re garding cushiosn and describing how you set yours up . I appreciate the info.

With regards to thermal radio frequency, does one need to have positive response to a ganglion inmpar block in order to beneift from thermal radial frequency?

I had a ganglion impair block recently and like most block I've had ,the numbing agent wore off fast and I was back in pain again.

The dod said that I had to have at least 6 hours of good releif in order to try something called phenol ? which I believe burns out the nerve...

This doc didn't tell me much about it... and Im not sure if he does the procedure you described...
Just wondered about the block question etc..

Also with a zero gravity chair is it possible to sit without your painful areas touching?

Sorry for the questios.. I am just desperate to find a way out of pain, and a way to sit even briefly.
Thx very much and best of luck to you.

[kathyd]

Hi folks
This question is a repeat of the above to anyone who can answer.
I am desperate for pain relief from my intense anal rectal pain (following nerve section surgery in 2011, things went downhill gradually to the point where I am in tears and seve pain each day... very hard on all of us in my home. I also have had a long flare up of my Interstial Cytitis but I believe it is nerve related...(same issue).
The treatments David described sounded positive and interesting..
--- such as thermalradion frequecy to the sensory nerves to block pain signals... Is a successful ganglion impar block a prerequisite for this? How much relief must one get to be "successful in this type of block.. My pain is very stubborn and ingrained in my CNS and it seems l almost impossible to turn off! But like anyone else I have a spinal cord and a brain, so something has to do the trick. ..and break thorough the pain.
About the zero gravity chair, would that work for someone with anal rectal throbbing? How about ny cushion that would work for this issue? I too have a mini van with adjustable top and bottom seats.. and am trying to figure out a cushion scenario that would allow me to drive... but my pain occurs on contact, and lasts after I get up..long term. This is new since my surgery...Before it only sitting caused pain..for the most part.
Now even bending imparts pain..It did not a year or 2 ago, so I figure whatever the surgery did( Scar tissue pressing on nerve ??) is worsening things.

I am currently pursuing a pain pump trial but so hard to know if you've got the right doc.
If anyone knows of a responsive pain doctor experienced in intrathecal pain pumps in (the NJ NY. PA or any where in the MID Atlantic states) PLEASE respond. I am willing to travel far if I have to, but flying would be tough.
It sounds like David's doc is on the cutting edge with various procedures... David if you see this ... where are you located?
Thx everyone for any info. I would appreciate any recommendations for the above>
Kathy

[Violet M]

Kathy, have you heard of Dr. Zhou? http://ppa1.com/meet-the-doctors.html He treated a former member here who was very happy with his treatment. He's a very nice doctor. I don't know if he does pain pumps but he might know someone who does.

Have you tried ketamine yet?

Violet

[kathyd]

Hi Violet
Thx for your posts.I replied a few times but somehow it hasn't posted.

I appreciate yoiur suggestions and encouragement.
Dr Zhou is out of the country so I proceeded with a trial with the doc I have been working with. He is very conservative with dosing of meds. but I understand why.
He wants to be careful and avoid dangerous side effects..
Anyway I will be working with him and his surgeon. Now I just have to hang in there until the implant surgery as my doc wants to keep my (ineffective meds) status quo till then
Will keep you posted
Thanks for all the support!
warm regards,
Kathy

[kathyd]

Hi Violet
Just wanted to respond to your kind inquiry about me...Can't find the exact thread ,but I'll respond here.
I choose a doc in my area who has good experience with the pump. I had my trial and had enough relief based on the mild amount of meds my doc used, that he was very happy with the results.
He has a very conservative approach as he goes slow and steady with meds in order to avoid side effects..etc.
Thus it takes patience and faith as you don't see dramatic changes yet,but he and every other doc/nurse I've met during this current process, assures me that this is his style and the way he works. ..and that of course it will take awhile etc..
I had my pump placed on Monday and am home from the hospital. When the pump is placed, the surgeon puts only a small amount of the meds used in the trial.. as they want to wait until a couple weeks your body gets used to the pump and begins to heal from surgery etc.
I will kepp you and everyone posted and write again.
Thx so much for your interest and good wishes! I appreciate it.
Kathy

[Violet M]

Hi Kathy,

Keeping my fingers crossed for you.

Hugs,

Violet

[LottaNerve]

Maybe someone who has a pain pump might develop this thread and let us know what it is all about. PLEASE respond if it has helped you

Hi I just realized this thread was here! It was posted around the same time I got my pain pump... It has been over 7 months now and my life has totally changed!!! I am living life again!

This is after 18 years with PNE and interstitial cystitis, after multiple treatments, physical therapy, nerve blocks, acupuncture, dry needling, paradoxical relaxation, biofeedback, neurofeedback, you-name-it. Then came the surgeries - TG with Dr. Hibner in 2010 and two neurolysis surgeries with Dr. Dellon in 2011. I spent more than two years bedridden, because the surgeries just made it worse! In fact, not only could I not sit, but I also could barely walk, and even standing was painful!

Anyway --- The pump removes most of my pain! What pain I do have is not even noticeable most of the time, unless I think about it. I have come to love my pump, and named her "Gertrude" out of gratitude for giving me my life back.

My doctor is a pain specialist who oversees the pain program at UCLA. His name is Dr. Joshua Prager, and if you google him or go on YouTube you can watch his videos on chronic pain, ketamine and advances in CRPS. He has his own practice, where I go approximately every two months to have my pump refilled. The magic elixir in my pump consists of bupivacaine (same as marcaine), clonidine (a blood pressure med with properties that reduce pain) and morphine. I didn't go through the pain program, because the pump itself has been so effective for me I have been able to rehabilitate myself with careful exercise, healthy diet and the joy of being out in the world again.

Because the medications are going directly into my spinal fluid, only 1/300th of the amount is needed that would otherwise be needed orally. So I am actually on LESS pain medication, but it is SO MUCH MORE effective. And because the largest amount is the bupivacaine, I am anesthetized where there is pain, instead of my brain! None of that foggy-opiod-brain. The knife-pain in my left vulva and buttock, as well as my bladder pain, are now numbed, which is what I had been begging for all along. It has been 6 months at least since I have used any ice on my buttock or between my legs! I was also able to titrate off the Fentanyl patch, as well as hydrocodone (Norco) and diazepam. I still take a small dose of levorphanol (2 mg) approx. twice a day and a low dose of Seroquel at night. These are to "down-regulate" the pain receptors - to quiet down my brain and central nervous system after all the years of cycling pain signals. When I asked Dr. Prager what the Seroquel was for, he said: "it tells your brain you're not suffering." Hmmm! I liked that. Maybe at some point I will be off oral medications altogether! We'll see....

IF, after reading all that, you want more info, I do have a blog with more of the story:
"From Surviving to Thriving: Overcoming chronic pelvic pain from IC and PN" at: http://scaseyquilts.wordpress.com/

Please PM me if you have any questions. I'm no expert; I only know my own experience, but I'm happy to share it.

[kathyd]

Hi everyone
This message is for anyone familar with the use of ketamine for pain I'm hoping that "Lotta Nerve" pops in and reads this,as I know you had tried ketamine, but in different amounts etc.
Sorry if this note. is long ...will try to be consise!

I have had only a small amount of pain relief with an internal pain pump Ive had for about 19 months. I still need to use 2 types of rectal suppositories-- one for pain, and one to address spasms,and helped with emtpying bladder. It was far from perfect (I still couldn't sit and was dealing with the constant use of laxatives to keeps things" moving".... A real problem as I posted about often.. It would be either too little output or too much! My system was a mess from all the constipation vs. diarrhea from laxatives.
Despite those struggles--, in the past few months I started getting more active. and feeling a tiny bit better on some days! I attribute this to the work of a new PT, the best one I've had in years...who found multiple trigger points in my painful anal/ rectal and urethral areas and has been working on them. She noted some progress and I noted the above rise is activity levels thankfully! very minor but it was something!
..I was able to occasionally dine out with my family and able to drive very locally, and be on my feet shopping for quite a while...Sure I had after-pain but seemed to bounce back faster recently. My PT, my pain doctor , and my infusion nurse all encouraged me to stay active and were happy for the progress. My PT has a special at home protocol which I'd slowly started as well. She feels my pain is from severe muscle spasm and many trigger points.. She also felt than the 'clenching' I do in my pelvic floor and all the worry' fear I have added to this. I agree.
Things seemed to be progressing.
However due to the bowel issues and the fact that the pain pump was in a spot that aggravated my bladder,
my pain doctor and I decided to try a new protocol-- to titrate me slowly down off the meds in my pump and switch me over to another medicine which treats pain without the constipation. Sounded like a good plan!
He planned well and had me "covered" with a combination suppository which included 5mg of ketamine/gabapentin/ lidocaine/ and 5mg of valium. (I forget the doses of the gabapentin and lidocaine in the suppository).. He also rx'd a Ketamine Troche- a tablet placed under the tongue which dissolves ..this was for possible increased pain during the titration.

All this is leading up to my question about Ketamine.
My pump nurse decreased my pump meds by about half, as per my doctor's plan. Since I had been at this level or lower when I first started with the Dilaudid in my pump, she didn't expect too much added pain. (My pump meds are not at a high level due to my bowel issues)
Within a few hours I felt the difference....pain went up! So I used the ketamine suppository to treat it.. and went about my day. My doc, PT and nurse all said to stay active and positive during this transition and use the pain meds if needed. So I joined my family out for dinner for our son's B'day... perching at the table with cushion .This hurts but was usually do-able as mentioned above.
This leads me to my question: can bladder flare from a small amount amount of Ketamine --- kick in right away? (ie Ketamine cystitis?)
I 'd been having a "bad' bladder day anyway with more frequency and hesitancy in peeing ... but after the use of the ketamine suppository, my urge to pee became constant, I had burning... I was in a flare! Id heard about" ketamine cystitis " or flares from it, but didn't expect it to happen to me as I'd had ketamine infusions in 2011, twice with no bladder flare..to my recall. But Im a worrier, and over-think things..even subconsciously.
I panicked, called my doc in the AM. asked him to stop the transition , and return me to my old protocol ..I thought I had ketamine cystitis
My pain doctor didn't know much too about this, so I explained it to him. He had thought maybe I didn't take enough ketamine, and given it a chance to help my increased rectal pain, and bladder issues;--- which might be the case, but I panicked and wanted to just put things back the way they were. I may've over-reacted, as after several years of this pain, trying so many things etc I have become very anxious...clenching and expecting the worst...etc. Its hard not to worry!
So. My doctor complied, he wants to help me.. my infusion nurse kindly came out the next day and put me back up to the former pump dose I was at.
She knows me well and was very vocal about the her thoughts that that one dose of ketamine in the suppository had NOT caused this flare.
All I knew was, both my rectal pain and bladder issues were bad, so I chose to do the above.
But guess what, a couple days later I'm still in bad pain, my bladder has calmed down a little but I still have hesitancy (I sometimes have to stand in shower for a long time to push drops out to get relief .... a BAD habit I know---something Ive been doing for awhile!)

So does anyone know.... Can this small amount of ketamine cause ketamine cystitis ie, a bladder flare from ketamine? Is this likely? Any thoughts would be appreciated. Im thinking maybe I overreacted, as my bladder can "flare" and/or be calm for no particular reason!
So hard to predict. Im sure those of you with bladder issues or pelvic floor dysfunction (my diagnosis) can relate!
Its hard to believe that just last Friday I was out with hubby enjoying a nice 'date' ... with after-pain later that was not too bad,etc.. based on the possible "progress I'd made.
I actually felt like "me" again for that few hours. Now Im back in pain.
All the changes -- the back and forth with meds this week could be why?
My CNS probably is in a whirlwind trying to figure out whats going on!
Any thoughts about the ketamine and what I described would be appreciated...As always, thanks so much everyone!

( And Hello to Lottan Nerve if you happen to read this... haven't been in contact for awhile...hope all is well with you!)

[Mod 15]

Kathyd, it was fantastic to read that you had made some progress and felt a little like your old self again. I am so happy to hear that.

It is also fantastic news that you found a PT that has helped you. Finding a team of medical professions that listen to you, work with you, and can help is more than 1/2 the battle to getting well. It seems like you have done that with your PT and your pain specialist.

It sounds like your pain doctor and you really came up with a good plan to try and wean you off the pain pump. You are so fortunate to have a doctor willing to work with, prescribe Ketamine troches, try some compounded rectal suppositories, and have a plan in place to wean you off the pump.

Regarding your question with the Ketamine cystitis flare. I do not feel like I would ever tell you either way that your increase in urinary symptoms was due to the Ketamine or not and this is why. You had IV Ketamine in the past and it didn't bother you bladder so on one hand it doesn't seem like it would bother your bladder now. On the other hand, placing Ketamine rectally gives a higher dose closer to the bladder compared to what you might have gotten IV and MAYBE that made your bladder unhappy. As you pointed out they were decreasing your pump meds, even at a low dose maybe that contributed. It sounds like this has really stressed you and understandably so now you are back to unconsciously clenching your pelvic floor. With all the bad weather we have had on the East Coast, changes in barometric pressure could have even caused it while it was moving across the US. Maybe like me, sometimes you have a flare and you have no idea what caused it, just happens. You have so many moving part to what could have caused the flare.

Since it sounds like you have a good working relationship with your pain physician you will not know whether it was the Ketamine unless you try it a few more times to determine if there is a correlation between the Ketamine and the increase in bladder symptoms for you. But, mentally, it might be more than what you feel like you want to deal with while trying to decrease your pain pump. You could ask him if you could try to decrease the pain pump again but use suppositories without the Ketamine to give you peace of mind. They could increase your dose of valium and/or add baclofen for the spasms.

Wish I feel like I could give you a definitive answer but these become very complicated areas when so many changes are happening at once.

Keep us posted.

[kathyd]

Hi Mod 15,
Thanks so much for your kind words and very wise comments. So kind of you! Its so nice of you to be happy for the progress I'd made, and I want everyone to know that it CAN happen even if in small amounts! IT was a hopeful sign and I hope to get back to that point very soon.
A week ago tonight I was out enjoying myself! I think relief can 'sneak up on you' in small ways and one doesn't notice it until it's taken away.

BTW, You expressed EXACTLY how Im feeling, as if you read my mind! All the changes at one time etc, probably too much for my mind and body to process etc. And this weather, could certainly be a factor..brutally cold in the northeast and mid-atlantic states.
I tend to 'freak out" a bit (subconsciously )when medicine changes are made. And of course that stress goes right to my pelvic floor. I can't wait to see my PT at my appm't this Sunday --she only works weekends--- and get her thoughts!
I am thankful that my doctor is willing to rx these meds.. I have been through several pain docs prior and none were any good in that respect.
But both my doctor and my infusion nurse know nothing about pelvic floor issues , esp how incredibly painful it is.
in fact the doctor is quite cavalier about me' handling a" little more pain and toughing it out", to give my body adjustment time etc. (this is so different from the usual stuff they treat) I wanted to scream..."Ive been 'toughing it out' since 2011 with rectal pain and since 2006 with urinary."
My nurse, a gal in has been very good to me, but she too is unfamiliar with this pain and can be a "tough love type", not warm and fuzzy!
Last night my doc told me to persevere with the new suppository combo through the weekend. Meanwhile I have a bolus -- a button you press and it increases (for an hour, the amount of medicine that comes through) the pump. I can use it 6 times daily. I admit I'd rarely used it before, as in the past when I did press it (while out somewhere on my feet etc) I felt little or no relief. I was also afraid of adding to bowel issues .
But this weekend I will give it a chance. I've pressed it twice today.
I have my dialudid suppositories-- my usual 'go to' pain ones . He told me not to use them and go only for the new ones.
But I gave in" and used them this PM as pain was brutal and was afraid to risk giving the new one a try and getting questionable or no relief, not to mention "subsconscious' fear of ketamine cystitis.
BTW I so agree with your thoughts on that. I know logically that the risk of ketamine cystitis is low, but once I hear of something my brain files it away, as a "possibility'... then I worry andclench... THATs is most likely part of my pain and why it's taking my body awhile to go back to where I was, even tho my nurse increased my pump medicines back on Wed.

Its a hard to make myself try again with the suppositories but I will. BTW the doctor refused to renew my baclofen/valium suppositories saying the 5mgof Valium in the new supp should be enough to address my muscles spasm both with urinary and bowel issues.. I disagree but hope he's right. He added try "deep breathing". Been there, done that!
My doctor was quite stern by phone when we spoke and he told me the protocol for the weekned ( he does have good points but is a bit condescending towards women, esp during phone calls.) He "ordered me" to stick to his protocol and ride out the pain. I thought my nurse (who has also experienced his condesension in her dealings with him) would support me, but she called me this AM and told me she agreed with him! Very strange and upsetting as she was supportive in her visit this week this week telling to use my dilaudid supps if needed.
Last night she told me to try NOT to use it but to inform if I do.. totally a change in her tune.. I do understand but it sounds like she told Im the worrying type. It angers me so to know they are talking about me like that, when they haven't' a clue how much this hurts!

I will keep using bolus and give new supps another try as prescribed. But if no relief, Im thinking of having hubby call my doctor (he listens to men!)
and remind him how well I was doing so recently and that for now we want to go back to the old protocol, give the physical therapy a chance to (hopefully) give me progress and then maybe re-try his protocol at that point..
I want those Baclofen/valium supps back... Hubby thinks it was just "too many changes" in taking those away,..I agree!

Im Not sure what to do. Who knows ...maybe the new suppository takes several tries before ones sees results and maybe pushing the bolus 6 time daily will help?
Just want to be where I was last week--- on my feet and and with lesser pain that allowed me to function and bounce back after activity

Mod 5 thx again..you hit the nail on the head in so many ways It's so good to hear from an understanding friend.
So thankful for you and everyone here on 'Hope'.. Any thoughts on my next step(tho I know there's no definitive answer, etc, would again be welcomed.
My best wishes to all!
Xo,
Kathyd