Good Afternoon all , as always I hope everyone is doing well both medically and personally as summer approaches. Thank you very much Kissa and Dave
for sharing your insight concerning the Zyrem and bringing up the possibility
of a pain pump for me. I am very late in thanking you both,sorry about that
but I had three short hospital stays since March. One for a partially obstructed bowel and sorry to say two for another MS relapse.Hey Dave,what was the name of that natural substance you stated that had similar properties to a colon cleanse? My
neurologist has just "upped " my type of MS to now Progressive MS- which is turning out to be a nasty little bugger! Just to give you some insight about the Zyrem I was not napping or sleeping during the day,I just could not sleep at night without waking up at least 7 or
8 times - I was getting maybe 3 to 4 hours of sleep a night. I did decide to try the Zyrem , however, I only have to take one dose a night and it has made a remarkable difference ! My entire body, mind and physical endurance have all gotten better. I am still taking Morphine ER 100 mg 4 x day but I
have now been able to take 8 30 mg roxicodone a day versus 12 a day I used to take.My pain levels are alittle higher now but I am attributing that
to my incresed physical activity - I am now taking more walks with my dog,
doing more PT at home and spending most days outside fishing or boating.
I just use my cane or sometimes my walker and it works out fine. Now,for
the BIG question, I never thought about a pain pump and my PM MD, she
has never brought it up-but after reading your responses to my last post,
maybe it is something I should comsider.I am also wondering perhaps, they
could deliver my baclofen ( for MS ) that way ? I am a bit lost in finding out where
I should begin to start gathering information on the various types of pumps ,
etc. One question I had is why do people have a pain pump installed versus
taking the oral,injectable,transdermal meds ? Thanks again Kissa, Dave
for helping me with my last post- I really appreciated it !....As always,
wishing everyone the best and Have a GREAT day today All !!........Chris
P.S. What is a Pump Trial ? and does it entail a very invasive medical proceedure ?
In additon, right now I have private medical insurance eventhough I currently
am approved and receiving SSDI , I have approximately another year until I will
be elgible for Medicare Insurance because of my disability ( they approved my SS
claim in less than 6 months, I am very thankfull). Which insurance would be better to use as I will lose my private medical insurance when I become eligible for medicare ).Thanks again for everyones help , I am very thankfull I found this site
and can converse with the compassionate,caring people that make up " this virtual
paim community ".....
Last edited by SurferGal; 05-10-2007 at 10:30 AM.
Reason: Forgot my original question !
Hi surfer gal, I used to surf too, In fact I surfed in the amature division of the ECSC for several years prior to my injury since it's located blocks from my home on the the the sandbar I learned to surf on.
Anyway, the natural product and active ingredient in the colon cleanses you see the infomercials on is called Cascara Segrada and cost pennies compared to the stuff they spend millions marketing. I think I paid 3 bucks for a bottle of 90 at the health food stoor. You wil have to play with the dose, start with 1 tablet twice a day but you can take up to 2 tablets 3 times a day if you need it.
The purpose of a pump is you have exponentially more opiate receptors in your spinal colum than anywhere else in your body. Most opiates are lucky to get 50% across the blood brain barrier, because opiates are mixed with spinal fluid by the pump, you get total crosover and it's the most efficient way to deliver opiates and Baclofen. You can decrease a dose from hundreds of mgs of morphine to single digit numbers a day, you don't have the impairment from opiates and Balcofen pumps are used more often on MS patients than the same pump that delivers morphine for chronic pain patients. I've been told you simply can't take enough oral baclofen to even come close to the effectiveness of IT baclofen.
The same is true for oral opiates.
The trials are done several ways, They all require delivering test doses to the IT space through a plastic cath that is left in place. They either use a pump exactly like PCA in-patient where the dose can be adjusted several times a day or it's done outpatient where a portable pump is worn around your waste and you still have the same cath placed. They can also use the single bolus injection method but the longer the trial the beter feel you will have as far seffectivenesss. Catheter just means a plastic line inserted into and left in the intrathecal space. No different than an plastic tipped IV.
Start your search at medtronics and request the patient info. As far as why your doc hasn't brought it up, it may be as simple as not every PM doc is trained to implant or manage a pump, if they don't use them, they don't offer them. Medtronics can give you a list of docs in your area that are certified by them to implant and manage their pumps. A company rep is usually their for the surgery to oversee placement and medtronics was grerat about answering any question I had. It has to be Someting about a docs EGO that makes them think they can do the job without referring you to someone that offers something they can't do.
You're a candiate because you have MS and would benefit from IT baclofen and your a relelatively high dose cp patient experieincing major side effects from oral piates. They would likely start you somewhere around 2 mgs of morphine per day, It's hundreds of times stronger when delivered IT.
It is terribly expensive if you have to pay cash. The pump and surgery were about 35K 3 years ago and the refills on the preservative free meds cost about 1500-2000 every 6-12 weeks depending on the pump and dose/concentrationof meds without insurance.
It's good to hear insurance is in sight and your not afraid to turn you med control over to docs. Simply giving up control is an issue for many people and part of the trial process is a psych eval, medtronics recomends it and if the doc is certified he should do it. Simply because some people will respond to plecebos just knowing they are getting the best delivery of a drug. Medtronics actually recomends starting with a plecebo trial and I've met folks that responded to it and were denied a pump do to this response.
It's nothing you jump into but it's sounds like you have been around the block and with the MS, the use of baclofen alone justifies a trial so I would certainly pursue it.
There are two basic types of pumps, Those that are batery powered and are programable but need to be replaced every 4-7 years and those that use compressed gas and a diaghram system that can last decades without replacement. The downfallis the inability to program or increae the dose without increasing the strength of meds. Thatymeans a med change, everytime you adjust the dose which can be expensive in the beginning. They start low, go in smallincrements and then fine tuen. It took 6 months and 15 adjustments to get to where I was functioning well and knew that was about as good as it gets. A succesful pump trial is one that relieves 50% of the pain. Some people do get better relief, but it's by far a miracle aside from the clear head. That alone is worth doing it IMO. Just think of it as tool that delievers the meds where they do the most benefit aned cause theleast side efects.
Hey Dave thanks for taking the time and effort for giving me the great
information concerning the pain pumps. It was great to hear you used to
surf also and I am already jealous of how close your home is to the waves !
My favorite place to surf is Cape Hatteras , but I have surfed the East Coast,
West Coast and along the Outer Banks..My dream was to someday surf
in Hawaii but I never made it before I got my first C5,6 Fusion. Getting back
to the pain pump issue, I called my PM MD this morning and she does implant
pain pumps. However, I forgot to ask if she used Medtronics. I am starting
a folder specifically containing all the information,questions I have concerning
getting the right pump so I can seriously begin to make an educated decision.
One of the best things I have started to do is search our board here for
threads concerning pumps,trials,etc and see what peoples real experiences
have been. Unfortunately, I can no longer drive with my MS , but I have a friend that is bringing me a bottle of the Cascara Segrada tonight,so I will
be trying it out. Right now I use Miralax and Docusate every night. With
my progressive MS it has been amazing how many meds I now have to take,
however, I am really beginning to take control and evaluate what meds are
necessary and what meds I may be able to stop or go to prn use. Of course,
I always run it by my Neurologist, PM MD, Primary Care MD, Therapist- I have
it set up that at every visit to a MD -thay send their dictation to all my
other MDs so we are all on the same page. I hope work is still going well
for you and all is good on the homefront. Take Care and Have a Great
Hey chris, Talk about a small world, I went on my honeymoos there 188 years ago. I think my wife was a little peeved I took my board. I figured that waspart of what atracted her in the first place so I pulled it off and did get to get wet. Unfotunately i just can't take the chance of gong through tumble cycle under thousands of lbs of water anymore.
Anyways, I don;'t thin kmy post was clear. I am dyslexic and I do most of my posting in the middle of the night when I can't sleep.
I really can spell, I just need to take the time to read what I write. LOL
If I wasn't clear, It's the non battery operated/ non programable pump you have to change the med itself to increase the dose. It goes at one continous rate so the only way to increase is to increase the concentration of meds. Personally I went programabale because my pain is defintiely wiorse at night and didn't want to depend on BT meds or be over medicated in the day when Ionly need it at night or when I get up. It does meen surgery every 3-7 years, but compared to spinal surgery it was a breeze. The pump is inserted under the skin and if they can scoop a little fat out to make it flush they do, But it's not implanted under the abdominal wall/hey cut no musle so it's not invasive they way you might think. They run the cath line just under the skin around to the back and cI can feel the line when I press on my side and I can feel where it makes a quick turn into my spine.
It's out patient or 23 hour stay surgery , it helps to wear the binder to keep it from bouncing around the first few months when scar tissue is creating And mine has stayed pretty flush with the skin even though I've lost 30 lbs, I guess they got a big ice cream scoop out and dropped it in. I'm 6' and weigh 182 and you can see the outline of the pump above my waste line, my wife can certainly feel it But it's not noticable with clothes on and depedning onsize it may be unoticabke with tighter cut clothes.. My wife certainly feels it but it doesn't get in the way other than banging it on cabinets and that gets old. It's like biting your toungue and for some reason you keep hitting the same place. It hurts more in the begining where now it just a good poke.
I did meet one girl that couldn't weigh more than 105 at 5'6 and her pump was very visable, it looked like a tuna can slipped under the skin. The newer pump, "the synchrome 11" is slimmer and has a larger resevoir than the one I have and the Isomed is the name of medtroics lightime pump. Bieng abal to program a higher evening dose, or a morning wake up dose, can do away with excess BT meds when it can be the norm to have to take something when you weake up or in the evening when on orals.. My pump is set to start delivering extra at from 5-9 so by 7 I have a real increasse and it's easier to get moving right out of bed. If pain is worse at night, you can program a higher or bolus dose then too. I had mine with 4 different setting at one point.
Personaly beause your going to have to adjust the baclofen frequently from the get go, because they move in .3 too .7 mgs per day at a time to be safe, The programable one has a huge beenfit. You just go in, they place the wand over the pump and it uses telemetry to adjust the dose. The new synchromed 2 even has a take hiome device to deliver bolus doses. That would be so much better than BT meds and I hope my doc is using them in the next couple years when I need a pump change. Change is good though, new technology is good.Sill, again people choose the Johnson and johnson,"Codman pump" too. Some docs may make the decsion because their comfy managing one type of pump.
Every doc is different even with pumps. One doc may believe anything over 3 mgs a day is too much , the next may think nothing more than 8mgs of morphine a day and others have had to change docs 3 or 4 times to find a doc to really take advantage of all the features. As long as it's not impairing and a high dose can cause side efects just like orals. We have personal limits with doses. but i think you will find you can readh a better more consistant level of pain and spascticity control.
Good luck, medtronics has an easy to find website and I imagine Johnson and Johnson "Codmans or maybe they callit something different now, beena few yars since I checked out the competition. . I would look for the advanced pain therapies, That's the catagory these pumps fall in, they also make pace makers and other implanted pumps to deliver insulin, chemo drugs are dilvered directly into tumors using a pump so you have to go to the right division of pumps. APS "advanced pain systemes is what medtronics clls it. feel free to call them and ask questions after you get the patuient info. And good luck, Dave