Message from addicted2harleys

Addi asked me to let you all know that she had the surgery to implant her baclofen pump yesterday.  It went well and she is already certain this was the right treatment decision for her.  Unfortunately, even good things come at a cost.  Today, Addis is paying the pain dues that are part and parcel of nearly all surgical procedures.

The pain doctor had explained what all to expect with this surgery but you know these guys.  They too often miss the mark on how it’s really going to feel (maybe because they don't get to see it from our side of the scalpel?).  

Anyway, Addi is in a world of hurt today and not yet up to sharing here via her own hand.  In her own words, "This is only a step and it is still going uphill."  She promises she will be here to update you herself as soon as she can.

Our thoughts and prayers are with you Addi.  I'm so sorry you are hurting right now but this is a pain that came to pass.  As everything heals and your intrathecal baclofen dose can be titrated to provide consistent relief, you will begin to live that transformed life you could only dream about 'til now.

Mary

[addicted2harleys]

Wow, ya'all!  Thank you so much for the support!  And an extra thank you to Mary for posting this for me.  

I am not pain free yet, but I have been told over and over that we will get there...patience.  I am trying real hard to be patient.  

I think through this whole process I have learned that I really think I have a very low tolerance for pain.  I feel like such a big baby!  :/

The surgery went well.  I heard it took about two hours to complete.  The pump itself reminds me of a hockey puck...same size and stuff.  It was implanted towards the top of my butt on the right hand side, just under the skin.  The incision for that is about 4-4.5 inches long and is diagonal.  Then, I have another incision going up and down along my spine in my lower back area.  It think it is like 1.5-2 inches long and is where the catheter was inserted.  I am told it slightly entered my tattoo but didn't damage it.  I hope not!

I have staples for both incision.  I can't shower until the staples are removed, on Tuesday, I think.  It will have been 11 days.  lol.  When I stand up or reposition myself on my bed, the wounds hurt me I think more than they should.  I get pressure feelings in them that take my breath away.  They are healing beautifully, I am told.  I have not seen my back, butt area since the surgery.  Personally, I can do without seeing them anyways.  

Oh yeah...I also have to wear this big Velcro abdominal binder for like six weeks.  It basically helps keep the pump in place and is also used to help stop fluid from forming around the pump.  

When the pump was put in, I was told I was only getting a small dose to start and we would build up.  The original dose was set at 49.96 ug/day.  The u actually looks like an upside down h and I am at a complete loss on what that means.  When I went in for my first wound check on Tuesday, my doc doubled the dose.  I still do not feel a difference with it, so it has got to be a small dosage still.  I know the trials were done with 50 ug but that was not spread out continuous for the day, it was all at one time.  And, I am still on the 60 mg of oral Baclofen daily at this time.  

My muscle spasms in my neck and back have actually increased since the surgery.  But, I was warned of this possibility due to trauma of the surgery.  I am also still on Oxi's and another muscle relaxer, too.  And still in a considerable amount of pain.  

So, our plans have changed a bit for moving to AZ now.  My mom, my daughter and our neighbor lady are driving our vehicle and the big moving truck to AZ on Saturday.  Our original plans were for me to ride in our car to AZ...a 10 hour ride.  We changed things for me not to do this and have the neighbor ride in my place and we will fly her home in a couple weeks.  And I am staying with my dad and will fly out to AZ on Wednesday following.  This will be better for me, medically...and all my staples will be removed the day before I fly.  

So, with the new plans, I get the experience of a security check point with my new implant.  That ought to be interesting.  I do have a card I have to carry on me at all times that explains about the pump.  This will be an example of when I need to produce the card.  I will also be flying out of an airport that I am unfamiliar for me and first time in a wheelchair, flying solo.  I usually fly out of LAX but this time it will be out of Bakersfield.  

Anyway, I am hanging in there.  I know I am healing, but I still hurt so much.  The day of and the day after I found myself really angry.  I hurt so much and was so over it.  Even though I knew it was going to get better, I still couldn't help feeling angry.  I am not angry any longer.  I am hopeful.  I know the trials were successful, so I know the pump was the right decision.  We just have to get to the right dose.   And I do know I will get there.  

We are scheduled to pick up the moving truck tomorrow morning.  It should be loaded and ready to go by the end of the day.  We have some strong male friends coming over to load the truck.  My dad will come pick me up tomorrow, too.  I will stay with him until I fly out.  Oh, heck.  I just realized that I will be separated from my little Yorkie girl tomorrow.  That sux.  

Thanks again everyone.  It really truly warms my heart to see all of your messages here.  My forum family means so much to me and it was a beautiful feeling to get on here and see what you all wrote.  Gentle hugs (I still hurt!!) to all of you!!

Thank you!
Addi

[rendean]

Addi,

As you said, one step at a time. Sorry for your surgical pain but keep your thoughts looking ahead to the day the surgical pain is gone and the pump is adjusted to give you a better quality of life and less pain.

You are in my thoughts and prayers and remember, redhead NEVER quit and I'm sure you'll prove that well.

Gentle hugs and warm thoughts to you,
Ren

[RedFlame]

Mary, thank you for taking the time to catch us up.  Addi, I'm rooting for you, my thoughts and prayers are with you.  Sleep as much as you can, surgery is tough even for 'regular' people---so much worse for us.  Here is for a speedy recovery:)

hugs
Red

[supermum_ms]

Addi,

This is yet another hurdle you need to get through for the promise of a better quality of life, please know we are all thinking about you and hoping you get through the ugly part as fast as your little body can cope with, so you can start to reap the benefits and ride!

Stay strong and focus on getting to the other side, I am thinking of you...

Gentle hugs..........JJ

[Sumanadevii]

My heart goes out to Addi.  I am sorry she is in so much pain.  I hope her doctor is giving her other pain relievers until she recovers from surgery.  If it all works as planned, Addi will truly be living a dream of a relative pain free life.  We are rooting for her...

GOOOOOOOOOOOOO Addi!!!!!

[MonkeyMom4]

I wish you a speedy recovery and less pain so you will be able to enjoy life to the fullest!!! =)

[torikat32]

I wish for a speedy recovery and the pump works and your quality of life improves you deserve it girl

Kat

[sarahw244]

I pray that you have a quick recovery and that this pump brings you the relief you deserve!

Sarah

[michelleric]

Thinking of you at this time, and wishing you speedy healing...Prayers are with you,
Michelle

[HVAC]

Godspeed on healing.

Alex

[Sarahsmom46]

I hope you will be over this hurdle soon.  You are a strong woman and have been through a lot.  This will be a bump in the road and before you know it, you'll be enjoying life again without all that pain.  Wishing you wellness and can't wait to hear how you are doing when you are up to it.  

Huge hugs.

Julie

[Sparkysarah]

Addi

Just to say that you are missed and we are all thinking of yo and I am sending you loads of love and praying that you are out of pain and feel better soon

Much love and big hugs

Sarah x

[MissLauraI]

Addi- I hope you feel better soon and the pump gives you the relief you need. Hugs and prayers for you!!

[luvnGod]

Addi you seem to be such a strong amazing woman!  I will be praying for a speedy recovery and that you are well on your way to being free from pain.  It's amazing to see all the wonderful love and support on here!  What a family!!!

Much love,
Stacie

[twist330]

Addi- thinking of you.

Twist

[Lulu54]

Addi, each day you will improve and be stronger. Just focus on AZ and you'll be there in no time.
gentle hugs,
Lulu

[cheesymum]

Saying a prayer!  

Be well!

[LisaJF]

Sometimes surgery makes you feel worse before you even got there on the operating table -- but in the end, you will heal and this baclofen pump will help you control this pain you have.  You are in my prayers and thoughts Addi.  

One day at a time and soon you will be feeling better each and every day.  It will take time so please don't be discouraged if it's not immediate.  However, I do hope it will be expeditious!  

love and hugs
Lisa

[Sumanadevii]

Still thinking of you Addi....Hoping to hear you are feeling better and moving around a bit.

[kelly97]

Thanks Mary for sharing this, so we can keep updated with Addi.

I hope the pain will fade fast and you'll be riding that virtual motorcycle again with the wind in your hair.  

Thinking of you and sending you hugs,
Kelly  

[maestro1959]

Addi,

I am so glad your surgery is over.  I trust the pain you are experiencing will be of very short duration.  I am praying to that end, and send my best wishes.  Just hang on to the thought that when the pump is fully operational, you will be the envy of many of us in that your pain will be under control.  Keep those good thoughts going.

Most sincerely,

Beth

[addicted2harleys]

Wow, ya'all!  Thank you so much for the support!  And an extra thank you to Mary for posting this for me.  

I am not pain free yet, but I have been told over and over that we will get there...patience.  I am trying real hard to be patient.  

I think through this whole process I have learned that I really think I have a very low tolerance for pain.  I feel like such a big baby!  :/

The surgery went well.  I heard it took about two hours to complete.  The pump itself reminds me of a hockey puck...same size and stuff.  It was implanted towards the top of my butt on the right hand side, just under the skin.  The incision for that is about 4-4.5 inches long and is diagonal.  Then, I have another incision going up and down along my spine in my lower back area.  It think it is like 1.5-2 inches long and is where the catheter was inserted.  I am told it slightly entered my tattoo but didn't damage it.  I hope not!

I have staples for both incision.  I can't shower until the staples are removed, on Tuesday, I think.  It will have been 11 days.  lol.  When I stand up or reposition myself on my bed, the wounds hurt me I think more than they should.  I get pressure feelings in them that take my breath away.  They are healing beautifully, I am told.  I have not seen my back, butt area since the surgery.  Personally, I can do without seeing them anyways.  

Oh yeah...I also have to wear this big Velcro abdominal binder for like six weeks.  It basically helps keep the pump in place and is also used to help stop fluid from forming around the pump.  

When the pump was put in, I was told I was only getting a small dose to start and we would build up.  The original dose was set at 49.96 ug/day.  The u actually looks like an upside down h and I am at a complete loss on what that means.  When I went in for my first wound check on Tuesday, my doc doubled the dose.  I still do not feel a difference with it, so it has got to be a small dosage still.  I know the trials were done with 50 ug but that was not spread out continuous for the day, it was all at one time.  And, I am still on the 60 mg of oral Baclofen daily at this time.  

My muscle spasms in my neck and back have actually increased since the surgery.  But, I was warned of this possibility due to trauma of the surgery.  I am also still on Oxi's and another muscle relaxer, too.  And still in a considerable amount of pain.  

So, our plans have changed a bit for moving to AZ now.  My mom, my daughter and our neighbor lady are driving our vehicle and the big moving truck to AZ on Saturday.  Our original plans were for me to ride in our car to AZ...a 10 hour ride.  We changed things for me not to do this and have the neighbor ride in my place and we will fly her home in a couple weeks.  And I am staying with my dad and will fly out to AZ on Wednesday following.  This will be better for me, medically...and all my staples will be removed the day before I fly.  

So, with the new plans, I get the experience of a security check point with my new implant.  That ought to be interesting.  I do have a card I have to carry on me at all times that explains about the pump.  This will be an example of when I need to produce the card.  I will also be flying out of an airport that I am unfamiliar for me and first time in a wheelchair, flying solo.  I usually fly out of LAX but this time it will be out of Bakersfield.  

Anyway, I am hanging in there.  I know I am healing, but I still hurt so much.  The day of and the day after I found myself really angry.  I hurt so much and was so over it.  Even though I knew it was going to get better, I still couldn't help feeling angry.  I am not angry any longer.  I am hopeful.  I know the trials were successful, so I know the pump was the right decision.  We just have to get to the right dose.   And I do know I will get there.  

We are scheduled to pick up the moving truck tomorrow morning.  It should be loaded and ready to go by the end of the day.  We have some strong male friends coming over to load the truck.  My dad will come pick me up tomorrow, too.  I will stay with him until I fly out.  Oh, heck.  I just realized that I will be separated from my little Yorkie girl tomorrow.  That sux.  

Thanks again everyone.  It really truly warms my heart to see all of your messages here.  My forum family means so much to me and it was a beautiful feeling to get on here and see what you all wrote.  Gentle hugs (I still hurt!!) to all of you!!

Thank you!
Addi

[drsdonthelp]

Addi.
So glad to see you on here, sorry for what you have been through and its obvious alot of people care about you .

Wishing you a speedy recovery!!
Hugs, Pam