Baclofen pump trial was completed...

[addicted2harleys]

Hi, all-

Well, as you know, Friday I went in for my trial run for the Baclofen pump.  At 8:00am, I was riding a Softtail down the coastal highway, wind blowing in my face, pipes rumbling underneath me, watching the rockets going off in the distance...not a care in the world.  Yes, it was only in my mind, in the real world I successfully received my very own IV, compliments of the very gentle nurse that was caring for me.  :)    

By 9:00am, the procedure was finished...the Baclofen was injected in my spine and I was waking up.  By 11:30am, I no longer had lower back pain/spasms.  My shoulders and middle back were losing pain/spasms by about 50%.  My neck was still very tight and spasm even with slight touch.  I could stand up straight and could remain standing for about 5 minutes with no back pain, just needed to sit due to leg weakness.  

I haven't had relief from these spasms and the pain since June of last year.  I was not 100%, but I hadn't expected to be.  I had more relief than I had thought I could.  My mom, my dad and my doctor were extremely pleased in what they were seeing in me.  I am 42 years old and needed both my mommy and my daddy here with me for this.  lol

So, do you want the good news or bad news first?

Ok, bad first...after about 1:30 I could feel all of my lovely spasms returning.  I knew this was going to happen, my doctor had been very informative with everything that was going to happen.  It still su cked and made me feel like I just received a teaser.  I know, I know...think positive.  

Which reminds me of the good news!   The test was a complete success.  My doctor wants to do the test one more time (next Friday) just to make sure this wasn't a fluke.  He is very cautious with this type of treatment because of how long the pump would be inside me.  He wants to know that without a doubt, this is the right course of treatment for me.  

As long as we see results next Friday, which we all are sure will happen, then I am getting the Baclofen pump the following Friday.  May 28th I will have relief of this debilitating pain that has left me bedridden for several months now!!  And I won't need the morphine for now...if needed, it can be added later...so we have a backup plan!

There were even reps for the actual pump there to see me.  They had called me Thursday night, too.  They work very closely with my doctor for the patient...ME!  They explained everything about how this all works.  They showed me what is going to be implanted in my backside area.  They explained so so much and gave me a book and video on it, too.  I really liked them.  And they stayed the whole 6 hours I was there, in case I needed anything.  

So, while I am laying back in my bed, in a considerable amount of pain, zoned on oxy's...I see the light.  I feel quality of light shining at the end of the tunnel, too.  I hope I can make it just two more weeks....

Thank you all for being here with me during this time of need.  I truly appreciate it...

Hugs,
Addi

[twopack]

I can't even begin to express the joy your report brings to my entire being Addi.  Actually, I have no words to describe my relief and hope for your future.

I'm sorry you have a wait on your hands now.  At least it is a wait filled with hope rather than despair.  I am preparing my rocket for this Friday.

Have you realized you will have your pump implanted over the Memorial Day weekend?  How symbolic is that?  You will be able to stand with dignity rather than pain and celebrate the victory your PERSONAL sacrifice has won for your health and welfare.  And there will be rocketS EVERYWHERE ;-)

Mary

[Deb61]

My sister just had her Baclofen pump put in a couple of months ago.  She's doing better--has some swelling in her abdomen where her pump was placed.  She also developed a hideous spinal headache which kept her in bed for two weeks and hopsitlized for 5 days (to rule out menegitis and other complications, etc.).  

Just one word of recommendation:  follow LP protocol after your operation.  Keep your head down for the recommended amount of time and drink caffeine when you're able.  Do take it easy afterwards (for at least two days) even though you may be feeling like a million bucks.  Don't go break dancing or turning cartwheels afterwards in celebration of feeling better too soon!  LOL

[RazCarver]

Addi,  thanks for sharing your memories of that relaxing place was right there too. :)
so glad the test run went great. sorry you have to wait till the 28th but will be thinking about your next trail going great too. so you can get the pump and it works for you. that would be awesome.

keep that special memory and you'll do great.
Raz

[supermum_ms]

Addi babe keep that wind a blowing through your hair!

I have been thinking of YOU, not wanting to hope too much that it will be your salvation, but hoping none the less. This is good news for a change, good news! One step at a time, in the right direction at least, which couldn't be better, right? :-)

In the mean time, maybe think of the wait like being in your last stage of pregnancy or labour, (a bloody long labor though) but as you know already from experience, it will be worth it in the end. LOL you could say you will be reborn on the 28th! LOOK OUT WORLD HERE COMES ADDI..........

Happy thoughts to you and yours........JJ

[addicted2harleys]

My alternative reality used to be my reality.  I miss it so very much.  It was such a stress reliever to be out for a weekend ride with no destination in sight....to just enjoy the wind, the rumble and the scenery.  :)   I am glad you all enjoyed my alternative reality with me...I know I will be visiting that place in my mind a lot in the next couple of weeks.  

Julie, I am happy to have made your whole day!  :)   I am going to take you up on being right there beside me when the 28th rolls around.  With how anxious I get just getting an IV, I can only imagine the anxiousness that is going to creep up on me when the actual surgery itself finally invades my mind!  lol   I am trying my darndest to not go there and just think about the outcome.  

Thanks, Alex.  I was so very hopeful that the trial would have a good outcome.  I am so very grateful that it was a positive outcome.  :)   And, here is to hoping that your new diet and antibiotics will be your answer for relief.  I really am praying for you!

Kathy, it is remarkable how far medicine has come, in regards to procedures like the pump and also so many other things I read and hear about.  I am definitely looking forward to the quality of life that I will be gaining after the implant.  I know in the beginning it will be all about adjustments on dosage and stuff, but I got a taste Friday of what is yet to come.  I am trying so very hard to focus on that and patience to last me through the next couple of weeks.  To have that taste Friday and then having to go back to my painful existence is hard to swallow, but I do understand the process.  Thanks so much for your support in this that I am going through now and the next two weeks.

Kelly, did you picture it in your mind?  *grin*   I sure did!  :)   I am most definitely on that road to getting much needed relief from pain and spasms.  Definitely good news on the horizon.  Thanks so very much for your support!

Cheesy, thank you so much!  I am going to grab onto your high hopes that next Friday will go as well as yesterday did.  I am so relieved to know there is finally help for what I have been experiencing.  

Lisa, thanks so much for your words and support.  I did know beforehand that the effects from the injection I had yesterday were going to be short lived, if they worked...like six hours.   So i knew the pain and spasms would return to what is my normal right now.  So, in that regard, I was feeling more like I got a teaser than feeling it was too good to be true.  This process definitely takes patience.  Thanks for the prayers that my positive light won't burn out!  :)

Lulu, the Medtronic reps were telling me the same thing...that the pump is nothing short of miraculous for the people it works for.  And that is something like 90% of people that do the trial.  I am so very glad and thankful to be included in that percentage.  Thank you!   I guess most doctors only do the trial once...mine likes to do it twice.  He says to make sure the first trial wasn't a fluke.  

It does 100% suck to have to wait the next two weeks, that's for sure.  Especially knowing that there is something that will work for me, yet I have to suffer through the next two weeks.  But, like you say, I am going to try my hardest to just stay on that highway and visualize my way to the 28th.  Thanks so much, Lulu!  

Thank you all from the bottom of my heart for all you have done for me, especially lately, since I joined this forum.  You all truly are my extended family!

Much love and hugs,
Addi

[Lulu54]

this is wonderful news - the word out there is this pump is nothing short of miraculous for the people it works for.  I am so glad you are among those .....

Sorry you have to wait the next couple weeks to complete this experiement, but that time will go fast.  Just keep yourself on the highway and try to visualize your way to the 28th.

gentle hugs,
Lu

[LisaJF]

I'm so happy to hear that you had some relief.  I know at times it always appears that its too good to be true when something is actually starting to work, only to have your symptoms reappear.  It makes you quite apprehensive of how successful it may be.

I do pray that this will continue in a positive light for you.

With much love and empathy

Lisa

[cheesymum]

YAY!!!!  I'm so glad Friday went so well and have high hopes next Friday will as well.  Very happy for you!

[anon07072023]

I love your description of your alternative reality - "I was riding a Softtail down the coastal highway, wind blowing in my face, pipes rumbling underneath me, watching the rockets going off in the distance...not a care in the world."  hahaha!  
And I also love that you may be on the road to finally getting some much needed relief from your pain and spasms.

I hope the re-test goes great and they can get you all set-up with the pump.  Good news on the horizon......

Hugs,
Kelly

[torikat32]

Addi,

I am so very happy for you now back to a quality of life probably better than you can imagine. Its remarkable how far medicine has come when it comes down to implants like these that have given patients more control over there day to day lives. 2 weeks isnt that far away and I will keep you in my thoughts that all goes well and that one day you may actualy feel the rumbling of a harley between your legs

Kathy

[HVAC]

Sounds hopeful.

Alex

[Sarahsmom46]

This news made my whole day!!!!  Awesome and about damn time.  I will be waiting right there along with you, your mommy and daddy, to see this finally get implanted in a few weeks.  It's about time for you to get back your life.  

It's less than two weeks now and you'll get there before you know it.  

Love and hugs,

Julie