Baclefin/Morphine pump

[addicted2harleys]

Does anyone have an opinion?  Or, even better, does anyone have it?

Thanks,
Addi

[RedFlame]

I hadn't heard about the bubble possibility.  

The 'fill er' up' issue was reported as only being problematic on the first time.  That the subsequent refills were not a problem.  I am wondering if they can't do it like they do an LP, give something through an IV port so you don't remember it.  That would be good.  

It's a bummer to have found some help and just now are moving.  

I don't know what his problem was.  He did nothing, not even taking over the management of my medications.  Anyway, he blew me off by contorting his body into a 'spastic' look and said we only do that for people like this.  

The important thing is that you get what you need.  I wish you could have it done there so there wouldn't be a problem when you .  Can  you do that?

[addicted2harleys]

Kelly - thanks for the response.  I am definitely done.  I can't sleep due to the pain and spasms.  So I am exhausted.  I have averaged 2-3 hours a night for awhile now.  I can feel my fight slipping away and that scares me a bit.  

My neuro's office has sent my records to this other doc.  I am just waiting for my pcp to send him my referral.  I have talked to the new doc and he can get me in within a day as soon as they get the referral.  

I did ask my neuro if he could recommend someone in AZ.  Coincidently, he moved here from AZ.  He did give me an idea of where to start for a neuro.  

Yes, I will take you all to AZ with me.  Just don't forget your cooling vests!  :)

Hey Lois!  Where have you been hiding?  I was bout ready to send out a search dog on you!  :)

Why couldn't you get the pump?  Are you gonna get a new neuro pain specialist??  You better.  I am on Baclofen pills, too.  And opiates and other muscle relaxers.  

I did some more reading on the pump, too.  There was another negative than what you mentioned, too.  Something about a bubble or something at the point of entry with the catheter.  The office lady that I spoke with today said that the doc will sit down with me and explain everything to me.  She was really nice.  

I am trying not to think about the refills and having another needle for it.  If I think about it too much, I might get all weirded out...lol...it is only the first time I would get the refill that it would hurt?  Then how do they know where on all the other refills?

Girl, I have been worrying about you.  You better keep in touch.  I can't afford to go to MI and drop in on you!!  I wish I could tho....

Hugs and thanks for replying and helping me out, ladies,
Addi

[RedFlame]

I'm glad to hear that you finally have someone who is listening and taking you seriously.  It's about time.  

The Baclofen pump was something I wanted and was hoping for.  I did some research on it a while back.  The only things negative I read was that the first time you have it refilled can be painful as it is difficult for the doc to find the entry point the first time.  It's a small hole in the unit that he has to fish for.  

The only other thing was a very small amount of people that had leaks that caused an overdose.  The OD was not fatal.  This was a decade ago though, they have really worked out the quirks.  I think you can shut it down using an outside unit as well.

I currently take 60mg. of Baclofen and we are talking about using the Zanaflex to potentiate the effect.  But at night I lose control of the muscles in my eyes and can't see.  

My 'neuropathic pain specialist from hell' that I saw laughed at me when I inquired about it.

I hope you are able to have this and the morphine pump as well.  It would be cool to have one unit though.

hugs,   Red

[anon07072023]

Addi, I feel so bad that you are in such terrible pain. If you really think it will work, I think that you should go for it. You deserve to be pain-free or at least have your pain level dramatically reduced. You shouldn't have to suffer.  

I know that good neuros are hard to find and also good primary docs. Maybe your new neuro has a good neuro friend in AZ that he can transfer you over to?

It's good to see you on here - even if it takes you extra time to get your comments out.  At least you'll be taking us all with you to AZ...    ;-)

Hugs, Kelly

[addicted2harleys]

Thanks, tick.  I am sorry you are experiencing pain, too.  I hooe you find some relief soon!  I was up until 5am last night because of the neck/cervical spasms.  :(

Mary - thanks for the link.  I will go check it out.  It shouldn't matter that mine is not SPI, right?   Just for reference for opinions on the pump...

Correct, I am still undiagnosed.  I don't think I will be getting my answers here in CA.  I am moving around the first of June to AZ so, right now, I am trying to get everything together as far as making sure I have done everything I can to help maybe with presenting a somewhat clear medical history for my new doctors in AZ.

I have FINALLY found a neuro-ophthalmologist that I can see.  I am scheduled for that on May 3rd, I think.  Hopefully he can give me more answers instead of telling me that my eye issues are neurological.  I have double vision always in left eye and sporadic in my right.  I suffer from blurred vision, too.  Severe dry eyes, too.  I am interested in making sure my optic nerves are ok.  

I also decided to get a complete neuro-psych exam.  I have been experiencing cog issues.  I have trouble reading, which I love to do.  On the Internet I have to read, reread and then a few more times and even then I have to save the page to go back to it.  I can't seem to retain info i have read.  This is an issue with the forum, too.  I don't post much right now.  Though I do try to read what everyone is sharing here.  I also want *proof* that I am sane.  lol   So, I have that scheduled for the middle of May...two full days of testing.   I thought this might be helpful for me when going to new doctors in AZ.

It kinda (okay, it REALLY) bites that now that i have found a neuro that takes me seriously, I have to leave him behind.  I honestly have considered not moving.  I have had such bad luck with neuro's.  I also don't want to leave my pcp.  He has been treating my symptoms for 3 years now and has been so validating and heaven sent.  So, starting over, doctor-wise pretty much terrifies me.

As far as the pump, from what I have read online about it, you are right about the test procedure beforehand.  I think that is a good thing because i would hate to get it just to find out that it doesn't help.  I am trying to stay optimistic...that this WILL work without any significant problems.  Something has got to go in my favor sometime soon....might as well be this.  Fingers are crossed.

My mobility is pretty screwed, very true.  Back in June when I flared, it was the longest flare I ever had.  My quality of life changed pretty dramatically at that point.  I used to want my life back.  Don't get me wrong, I still do...but I would settle for the life I had before June.

My legs always seem to go when I flare, but they usually get back to my norm....which is basically just drunk walking.  This time they didn't bounce back.  :(   I have spasticity in my right ankle/foot.  I can't walk more than a dozen or two steps without sitting and that is with aid (walls, someones shoulder or walker).  It's like my legs have a mind of their own and do want they want...which is not what I want.  I cannot get up out of a chair by myself.  I have to use a trapeze to get out of bed.   I have nerve pain in both legs and both get muscle twitches, all worse with my right leg.  I was getting spasms in my calves, but that has stopped.  My left heel is numb, too.

My upper body does okay, as far as strength.  I can operate my chair for a trip around walmart without help.  I do need short breaks though.  I have the strength to pull myself up with the trapeze, though it tires me.  I do have nerve pain in my right arm and experience numbness in pinky and ring fingers down into the hand.  

The muscle spasms are in my neck, shoulder blade area, ribs and pelvic floor.  Pelvic, not too often.  Neck, shoulder blades is constant but the degree fluctuates and, just in the past couple of days, pain seems to radiate down right arm.  These are the worst of my spasms.   The neck spasms were one of myy first symptoms, but I interpreted them as tremors in my head.   They are much, much worse now.   Ribs get vibrations like mad.  Spasms in my ribs seems to have simmered down.  I do have tremors in my hands.  I thought it was just my left hand, but neuro says it is in both.   I guess I just noticed the left because i am left handed?

Got some other stuff, too...urinary and bowel issues, swallowing probs, breathing trouble, internal temp malfunction, and the good ol depression.  :/   I am holding my own in the depression...head is still above water and I still laugh a lot.   The quality of life is getting to me, for sure.

I appreciate what you are asking...yes, I want to know the WHY, too.  I think my neuro is stumped.  He has been saying he firmly believes it is a hereditary neurodegenerative disorder.  Which one, who knows?  I know I can't think of any other tests to have done.  Well, except EP's.  I have never had any of them.  I don't even know which doctor to ask about them.   There are three kinds, right?   I am hoping the neuro-ophthalmologist will administer a VEP....think that is a possibility?  

Oh yeah, I am also suppose to start back up with physical therapy.  I need to call them on Monday.  

I also am trying to keep up on my daughter's stuff now, too.  I did get her into Children's hospital.  May 9th.  She is seeing a pediatric neurosurgeon who specializes in Chiari.  I am thankful that they accepted her case.

Well, this only took me 3 hours to write!  Even with cog c r a p I still managed to write a novel.  Just took me a lot longer to write than it normally would.   Now I am going to go check out that link.  

Thanks so much-
Hugs,
Addi

[twopack]

Hi Addi.  I don't know the answer for you but I do know you have a huge amount of (still undiagnosed!) mobility impairment in addition to the out-of -control spasms.  A pump is used to get better relief with lower doses of Baclofen.  I believe there is a test procedure to see if it works before the pump would actually be placed.  Of course the potential for vast relief never comes without potential for significant problems.  Otherwise, everyone would be signing up, right?

I'm thinking people living with spinal cord injuries might be able to offer you more insight than we can here.  So I'm posting a link to a page that explains the hows and whys of spasms resulting from SCI.
http://www.apparelyzed.com/spasticity.html

There are additional links at the bottom of that page specific to intrathecal Baclofen therapy (the pump).  They list a discussion forum too.  I didn't look around so don't have any idea how good the links are.  The page I posted the URL for does have good info.

I'm curious.  Do you have spasms throughout your body or are they confined to your legs?  Also, is there anything still in the works geared toward diagnosis?  I'm thrilled this doc is seriously addressing symptom and pain relief.  I'm just never satisfied myself until I get the medical WHY question answered.

Let us know what you find out and how you are doing.
Mary

[cainer]

hey= hate to hear your in so much pain, id do the pump if it comes to it.  man now my back,neck,arm its crasy!!  you are so right what quality of life!!  i  hope it just goes away 4 you! hugs  tick

[addicted2harleys]

Thanks, ladies.  I am on Baclofen pills now.  I am also on a variety of other drugs including opiates and muscle relaxers.   Not to mention when the pain gets so intense that I end up in the ER getting morphine.  My pain has been uncontrolled since June.

My neuro wants me to go to the pump.  He doesn't feel that pills are the answer...that i am past that point now.  He said both Baclofen and Morphine.  At this point, I am ready for it.  I am so tired of the pain and it only seems to increase and increase and increase.  Between the muscle spasms and pain, I am exhausted.  And, so over it.  My quality of life...well, what quality?

Today I was in my neuros office and he played with my body parts and such and now tonight I am in pretty intense pain...muscle spasms in my neck and back.  Heck, my neuro set my neck off almost as soon as he touched it.  I simply don't like going to the ER so I am trying to push through the pain....but it is a losing battle.

I did do a search on the pump on my way home from the doctors.  I can't believe that I am saying, "okay, do it" with an elective surgery...especially with my allergy to needles (well, at least I still retain some humor).  I guess the pump goes in your side, stomach area with the catheter going to the spine.  Ewww.   Truthfully, that grosses me out and gives me the willies.  

I didn't see anything about the MRI's, but it does seem logical to assume it will affect them.  My results always come out "normal" anyways.  The intensity of the pain outweighs that speed bump at this time, for me.  That's the way I feel about it right now.  I guess I would set off the security thingies, too.  I always get personal treatment with those now anyways because of my chair.  So...

Thanks again.  And, Candy- I missed you all, too.  I sure hope you are feeling better.  hugs back to you, my friend.  

Ren - HAPPY ANNIVERSARY!  I hope you and your husband enjoyed your day.  That's a pretty proud number to have under your belts.  Congrats, hun!

Hugs,
Addi

[rendean]

Addi,

Baclofen pumps do help a great number of people as it a constant source of drug to give you even pain coverage. The only person I know firsthand with one has cerebral palsy and it stops his spasticy . The downside would be the implanting it your spine and I "think" that MRIs are an issue afterward but I'm not sure about that.

I'm pretty sure there a couple of people with morphine pumps on here. DJ has a pump but off the top of my head, I 'm not sure what kind.

Ren

[jensequitur]

People that have to have the baclofen pump are okay with it.  I guess it's for when you have to take more than 8 a day.  The problem with baclofen is it has to be in your system, so the pump makes sure that you have a constant, if lower dosage all the time, instead of taking your pills and waiting for them to work!  

[candy158]

Sorry Addi but no ..  I do take Baclofen tho' but try not to do the morphine .

I am glad you are back i missed you. Hugs