I will definitely be talking to my doctor about this! It is really inspiring to hear how well you are doing. Even if it took away half the pain I would jump for joy lol.

Being able to hike again would be an amazing miracle! Would love to go squatchin with ya!!!

Ditto For Me!

Same here! You have given us a lot of hope Tessa! Im so glad you finally have relief!

Good Morning All - Happy Easter Celebration!

The nurse came yesterday and looked at the port and incisions and all looks good! He also ordered me some waterproof shields so that I can take somewhat of a shower (still not a 'real' shower for another 3 weeks) oh... that is going to be nice! The reason for not taking a real shower is the risk of infection, I don't want that so I will continue to be patient.

The incision pain is a little better this morning. I slept remarkably well last night and off/on yesterday. Today will be a busy day with family & friends so I'm sure the extra sleep will help make the day as enjoyable as possible. What is amazing about today - NO ANXIETY about visiting with friends, family, children running around and a few dogs.. an environment that would have caused such great anxiety/pain 23 days ago now brings a smile I'll keep you posted on how well it works.

I wanted to share a few pics of what this Epidural Catheter w/port entails for those that are interested in discussing the viability with your physicians. These were taken just hours after I got home.. pardon the postop look The one with me holding the backpack.. yes, that is the backpack that holds the meds and pump.. The med bags for now are the size of IV bags but this will change to smaller ones once the port is well healed over and the risk of infection is greatly reduced. I learned yesterday that the reason they sent the large bags is that the more times you connect and disconnect tubing and needles the more risk for bacteria to enter. Once everything is well healed we will switch to med bags that last 24hours instead of 3 days, then I can have a smaller pack.

It is working marvelously!!

Wishing you all the best day possible,
Tessa

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You’ve done so well Tessa! You should be so proud of yourself!! I am so glad that you have gotten so much relief and that you are off to enjoy the holiday with a much lower anxiety level as well as lower pain levels. Just fantastic! Thank you so much for sharing this journey with all of us. It is so great to know that there are other options than just morphine and the like. Thanks for showing me how it’s done! (where's the :hifive emoticon?)

Vrae

I was following the progress on your procedure,let me tell you,I get so excited ,I also had and scs but like you said not enough to keep rsd in total remission ,I'm so happy for you and glad everything went well,I was considering to suggest my pm dr about that procedure,well I have to wait he is still in medical leave,is been a while,lucky the two new dr a had seen have so much better approach then my original pm dr,by the way,looking at your pics I see myself reflected,same incision ,gosh,what a coincidence , I know is hard to get use to,also is hard to find the right med combo to work,each individual respond different,I'm glad finally something work well for you and for guide us step by step into it,I'm sure if my dr and insurance agree in the new treatment I already will have a clear view,literally ,of what will happen and how,wishing the best,just needs to recover from my gallbladder surgery first,been mostly two weeks almost,I will see pm dr on Thursday to see our new plan and how to approaches my left leg pain (the good leg by the way now affected because of the battery ) and there after my injure foot,the right one,so will see what happen .
I'm glad you feel much better,is hard to get to this point after trying so many things,you never stop amazing me,wow,you are more like a Wonder Woman now, for all the details and all the info you provide us,I hope the future only bring you painless days,enjoy today's day,happy Easter ,hope you don't try to be the Easter bunny today,you need to relax and get a good nite sleep,you deserve it,blessings and thanks for everything you do ,never change! Your friend Jesika
Ps.glad,you are at home now specially for today's day!!!

Hello All,

It's been just shy of 2 months since my Continuous Epidural Infusion was started so I thought it was time to give you all an update.

I am happy to say pain is well controlled with average pain scores 2-3 . There are still times daily that pain will ramp up depending on what I am doing, weather, environment etc., but, having the ability to give myself a little bolus dose of meds takes the pain right back down! I am able to do more physical therapy or 'pain therapy' as I like to call it by using my recumbent bike, walking and a couple of short hikes . I no longer panic at the thought of going to the grocery store. I actually sleep now.. and don't notice when my husband moves about during the night, the sheets/blankets no longer need to be propped up off my legs and I can sleep right up against my husband.. WONDERFUL!! Just having skin to skin contact has been such an amazing regeneration of body, mind & spirit!

Today will be the first day where I will be surrounded by a large group of people. Prior to this Epidural this would not even be an option as noise, people moving about etc., would make pain intolerable within minutes. Today however is a special day; I will be attending a fundraiser for a sweet young girl who has been battling a rare form of cancer, her story is heart breaking but her fight is aw-inspiring! To learn more about this sweet 'Ahmie' go here: https://www.facebook.com/miraclesforahmie what a wonderful day this will be.. "when life gives you lemons, make lemonade!"

A few hiccups along the way:

In sharing the positive aspects of this Epidural Infusion it wouldn't be fair for any of you if I didn't also include the hiccups/drawbacks. First the hiccups - for those that have been following you might recall that I have an internal cath-a-port that delivers medication from an external infusion pump directly to my epidural space. The internal port is accessed using a special external needle (huber needle), this unfortunately has been dislodged several times creating a leak at the port. This causes tremendous pain of course because I am suddenly without meds and I think my pain threshold is a little weaker than it was simply because I the pain is so well controlled. When this happens it requires either a visiting nurse or another trip to the doctors office to change out the needle and use xray or fluoroscope to ensure no internal failures have occurred. Thankfully, each time it was a simple procedure to replace the needle. This is done every 8 days regardless of whether there is a leak or not but, does cause some discomfort at the needle site for 12-24hours afterwards. So having it done early isn't fun.. but, so much better than the alternative of unrelenting intolerable pain! Other than that all incisions are healing up well (there were 3 incisions) and no signs of infection or issues with CRPS spread to those areas.

Now for the drawbacks:

Being attached to a backpack 24/7 can be annoying especially at night when I get tangled up in the tubing but, I am getting used to it.. mostly.

Not being able to take a bath, go into a hot tub, go to the pool etc., is a real bummer!! I hope someday I will be able to detach long enough to enjoy a long soak

Intimacy with tubing exiting your body kind of kills the 'mood'.. enough said!

There are other little annoyances, but overall, none of them are worth whining about since I never ever want to go back to the pain I was in before!!

Wishing each one of you the very best,
Tessa

Thanks for the update. I'm so proud and in awe of you. You are a true inspiration.