Epidural Cath-A-Port / Epidural Infusion
 

Hello All,

Recently I posted a case report about the use of and Epidural Cath-A-Port that had given a young woman 10+ years of excellent pan control for CRPS II / Causalgia. I am excited to share with you all that after sharing this article with my doctor and a few others on the same, that we started the first steps to see if this will work for me also.

The first test was an Intralaminar Epidural Injection - this was a long acting right sided lumbar injection with Lidocaine, small amount of morphine & versed. The idea was that this would show whether or not the medication did indeed relieve the pain from where the nerves are damaged and caused CRPS II. I am happy to say that it did that 100% .. actually it worked to well (as expected) in that I was so numb from the right rib down that I could not walk. Much like getting an epidural for surgery to the lower limbs.

The next step is to place a temporary continuous flow epidural as in inpatient so that the meds can be adjusted to allow me to walk and most importantly still relieve pain. They will also monitor closely for any signs of infection as they would anytime you have an epidural. The insurance companies generally require this part of the process but, the bonus it that there are many studies that indicate the effectiveness of an epidural infusion so perhaps I will benefit just with that alone - there is always that hope. I am being admitted for 3-7 days starting at 11AM today .. oh am I looking forward to the relief, some directed PT and mostly for some much needed rest as pain has been increasing daily for months.

The final step as long as this is successful is placing what they call a 'tunneled epidural catheter w/port'. This is slightly different that the pain pumps that are used in that only the catheter and epidural are buried under the skin - the infusion part is attached when needed by a pouch that connects to the internal port. A home visiting nurse would come weekly to change meds and flush system.. another great bonus for me, since I live 3 hrs from my doctors office so that will be much less driving YIPPEE. This system will be filled with non-narcotic medications like lidocaine etc., more of an anesthetic effect rather than narcotic pain control which is what works best for neuropathic pain generally. That is also very important to me due to the cognitive effects of pain meds.

Oh.. I am dreaming of wearing something other than stretch pants, showering without the fear of water drops hitting my worst leg, actually wash my legs with soap!, going into a building and not immediately looking for all the air-vents so that I can plan my route accordingly with hopefully less pain and so many other things.. oh I hope this works!!

I know this isn't a common procedure but the theory behind the inpatient epidural is similar to that of a ketamine infusion only less potent and in my opinion dangerous meds. I plan to keep you all updated every step of the way since I really think this can help many of us who have exhausted all other options for pain control without any significant relief.

I do have an SCS and although that still works and runs 24/7 it isn't enough. For those curious about the epidural along with the SCS - the epidural catheter will be placed right along side or one vertabra lower than where the SCS leads are. Wasn't a problem when I had the initial injection so I am not worried about any problems there.

Wishing you all the best day possible - I'll check in as soon as I am able.

Tessa :D



Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul alike.
- The Yosemite

Tessa, I am so happy that you are possibly finding something to help your pain, and possibly help others too! Please do keep us posted on your progress. I wish you the best of luck durng this process.

Nanc
:hug:

Wishing you the absolute best today Tessa!! Please keep us posted as you feel up to it. I pray you wake up and feel no more pain! :hug:

I am so pleased to hear of your progress Tessa. The best of luck and may all your wishes transpire. What a blessing.

That's fantastic Tessa! Do you know if this works for people with upper body RSD? I also have crps type 2. But mine is in my upper body and arms and my dr told me I would not be a candidate for even the SCS because it wouldn't help.

Hi Tessa, I am so happy you found something that may help you feel better. I will pray that it helps and that you are painfree soon! Take care my friend. Sincerely Renee.

Good Morning All! Warning medication is making my normally poor spelling and grammar even worse ! Please forgiver typos and brevity, thanx.

Thank you Nanc, Vrae, Krow47, tos8, RSDRenee, Az-Di, visionoisiv & the others who reached out to wish me good luck yesterday - that little gesture of kindness means so much!

It has certainly been a long 24 hours. After getting the epidural placed, I received the first to medication bolus injections while we waited for the hospital to assign a room. The medication was fantastic except that it paralyzed from the chest down and limited use of my hands/arms. Gosh, what a bummer since the pain was completely gone :/ Let me tell you what an eye opener that experience was though... I have always had respect for those who are physically incapacitated, but I cannot explain how deeply I feel for anyone enduring that kind of daily challenge. I mean I know I often say 'I can't do something' because of pain.. but this experience has given me a whole knew understanding of what the term 'can't' actually means.

Anyways, moving along.

After getting my room number it was actually almost 8 hours before they were able to start the 'continuous epidural' due to one problem after another. I was beginning to think I wouldn't actually get this therapy after all. Thankfully after a mechanical failure, battery change and an expert nurse from another floor being called in to help with this machine they did finally get it going. By this time however I was beyond miserable. People going in and out of the room, bumping into my legs and this stupid air-vent blowing ever so gently over my bed all together brought tears to my eyes and and uncontrollable shake to my lower body. The nurses tried there best to avoid causing me pain but as you and I know all to well that this thing we call CRPS is relentless, not caused by anything in particular, just made worse by them.

After adjusting the meds in the epidural I was able to re-gain the use of my arms and the less painful CRPS leg. The right one and most painful one is still numb to where function is limited and sadly.. still has a couple of the painful symptoms breaking through. That seriously bums me out - I do hope that with some fine tuning of the medications, that we strike a perfect balance between pain control and functionality. Not giving up yet!! The next few days are more about blocking the pain party my nerves have been having than anything else.

Good news - I slept for 3 hours straight!! Whoot Whoot that was so nice. Normally I only sleep for 30min to 1 hr at a time before pain jolts me out of my dreamland. That was what I was looking forward to the most honestly.. just a little quality sleep :) It is amazing how much more we can endure, when we aren't sleep deprived.

I really do hope today goes a little more smoothly.

Tessa

Hi Tessa. I'm glad to hear you are slept well and that the procedure you had helped a little. I'm sorry it took so long to get it done and that you were unable to move some of you body during the procedure. That must have been terrifying. I am glad it helped a little, and hope that it will help more especially your right leg that seems to be giving you the most trouble. I will be praying that your day tomorrow goes even better and am proud of you for still trying. You are always so positive and an awesome role model for the rest of us. Make sure you rest up enough for tomorrow. From your friend, Renee.

Thanks for the update!
 

Oh Good, good! There you are!

So sorry to hear about the paralyzation, good grief. I do know what that feels like though. Was that way for me when i woke from my 2004 surgery and stayed that way for a week, but only from the waist down. Can’t imagine from the chest down. Wow Tessa, so sorry hon. I agree w/ you about those who endure those challenges daily. Anyway, glad that got that worked out and you can use your hands and arms again.

Yikes, an eight hour wait? ugh! You’re amazing! What a trooper. Perhaps after they bathe the nerves in the analgesic for a bit they will calm down more and you will see even more relief. But for now.. Yes, that’s fantastic that you got a few hours of uninterrupted sleep, in a hospital no less. You poor thing, yes.. you need rest badly. I hope you get more today. :Zzzz: Sleep deprivation sucks and exacerbates everything.

I hope today goes more smoothly too Tessa. Goodness, what a patient woman you are. My hat is off to you! :Tip-Hat: I’ll say it again... amazing! Keep fighting T, Keep fighting! I’ll be looking forward to another update!

Omg! You crack me UP!! :D huktonfonix ...lmao! me either <sigh> I hope you have a good night tonight hon. ((((((Big Hugs)))) :hug:

Hey Vrae,

Thank you Vrae and Renee!! I am doing better now. Rough night and morning but it wasn't anything we didn't expect. Finding the perfect balance is going to be a challenge but, I am confident enough in my doctors that we will do it!!

lol.. I wanted to message you and post more but my fingers and arms just wouldn't work. My heart especially goes out to those of us who suffer with CRPS in the hands and fingers - I will do whatever I can possibly do,to help create awareness and or find a cure. My doctor and his ARNP spent a great deal of time this morning discussing the many affects of CRPS with several nurses who are caring for me. They were fascinated and blown away to not only hear about it but to see first hand the severity of it.

I have so many funny and eye-opening stories to share with you guys when I can focus a little better.

Vrae - I couldn't do this without you!! You have inspired me, you keep me focused and you crack me up when I don't think anything could possibly make me smile - love ya for sure!!

Update on condition: After being so numb that I couldn't even feel myself peeing (pardon) all over everything. I am now walking down the corridors, peddling with mobile PT peddles and working with thera-bands. lol.. I haven't pee'd myself in 4.5 hours ;) so the nurses are much happier now.. haha. Seriously though, I felt so bad for them and for me! Oh well the amazing part isn't the falling I do along this journey it is the moments where we get to rejoice in little triumphs. So today my triumph is that I can tolerate my legs being exposed to the air, to touch either from me or someone else and I can walk without limping Yipee Yahoo!! Those are huge things for me and a reason to rejoice!! For those of you who need a little inspiration today go here: https://www.youtube.com/watch?v=b8VoUYtx0kw makes me want to get up and dance!

Thanks again ya' all - you really do make a huge difference in my life!! :hug:

Thank you tos8!! Yes, it does work with upper body CRPS II. I don't actually know how well it would work for RSD/CRPS because all of the studies I've seen all discuss patients that have had clear nerve damage. For upper body CRPS II much of the research stems from those who have suffered the effects of CRPS after chemo/radiation.

So far I am very happy with how this is working. Of course we need to continue to tweak the medications but, I can really see how my life could be greatly improved by using this versus some of the other things I have tried.

Good luck to ya,
Tessa

So happy to hear you are doing better today Tessa, and that so far this is successful. SO happy for you!!!

Here's to hoping you continue to have success with this treatment and that you don't pee yourself anymore :D

I have had a migraine all day, but wanted to check in on you...now I know, so to bed I go.

Take care,
Nanc
:hug:

I am so glad your getting some relief! Hmm this makes me think about going and seeing a PM dr. I have CRPS type II from 2 very botched surgeries and the issues we have always found is that I not only have the CRPS, But I also have major damage from the surgeries, so they haven't ever been able to come up with any solutions because if its not 1 issue its another. Where this treatment your trying seems that maybe it could help both my problems.

overcomer
 

Little triumphs… air doesn’t hurt? touch doesn’t hurt? and walking without a limp? …THAT’S FRIGGIN HUGE!! BIG. BIG. BIG. I AM SOOOOOO EXCITED FOR YOU! You are an overcomer. Period. You haven’t given up. I bet they are fascinated with you… and CRPS too.. bonus. You are a good teacher for them.

Awe T.. you’re too sweet, or on drugs! Lmao… :D

:( don’t let the peeing thing get you down. Like you said it’s going to take a minute to get all the meds worked out. Atta girl, don’t lose your sense of humor. :) You can totally do this! You ARE doing this! :hug:

Oh my gosh, Tessa! I'm sorry I've only just seen this today. Good luck with the treatment. You are being so very brave! And good for you for taking control of your treatment. I know you always do but still...you rock!

Day 3 - Doing the Happy Dance!!
 

Hello All,

I am so frickn' excited!! I have been absolutely pain free in my right leg for 26 hours and only very minimal pain in the areas of spread. It seems so hard to believe that just over 24 hours ago- I was in total agony, begging for anything that would knock me out and rid me of the pain. And now... I'm nearly running the hall ways!! I am just ecstatic right now. Shout from the roof top excited.

Honestly, this is so doable!!

Thanks All - I really appreciate it!:hug:

Hi zooester
 

Good to hear of these results. Keep posting as to what happens. You offer more hope to people who have this condition. I know many are watching and listening to you right now, praying that this works for you, so that they too many have a chance to try this. Thank you for being so brave. ginnie:hug:

I am so happy for you Tessa! I hope you keep feeling better every day. My thoughts and prayers are always with you. You go girl! Yahoo!!

:yahoo:

Oh wow Tessa.. This is FANTASTIC news!! :hug: I hope this continues and that this changes your life for the better, forever! I believe this could hold promise for many of us. I bet your husband is also excited as can be. Thanks so much for the update! I hope you are getting some rest!

:You-Rock:

Aw thanks Vrae!!!!

I've been wanting to write so much more but, I'm afraid with the pain being gone and a little medication on board that I am sleeping often. Yes, that alone is so refreshing! I slept 7 full hours and not once was I awoken from pain.. it is almost unreal. haha.. I feel like I need to pinch myself just to make sure I'm not dreaming!

I do believe 100% that this form of therapy could help a lot of us. In short the only thing that I would say is difficult is getting through the initial epidural bolus(s) that are needed to get on top of the pain and to determine how much is needed.

It looks like I will be here until Monday or Tuesday but so far this is amazing!

This is amazing and wonderful news Tessa!!! :Excited: Thank you so much for sharing this treatment experience and process with us. I am incredibly happy for you!!! I sure hope it continues to get better and better. Definitely gives us hope!

Nanc
:hug:

Tessa how does it feel being almost pain free? Whats it like?!! I don't remember what its like to not live with this horrific pain, I cant even grasp it being not normal anymore. So whats it like to have minimum pain? Im so very happy you are feeling better!

Hi Tessa, I hope you are doing okay today. I'm always praying for you. From your friend, Renee.

Hi again Tessa, I just wanted to let you know I was thinking of you and that I hope you are still doing okay. I'm praying for you! You are very brave and I am proud of you! Take care and make sure to get plenty of rest. With love, Renee.

Thank you for reaching out Renee and for your prayers, it really means a lot to me. I've wanted to post much more often than I am able, I hope you all understand. I think I've slept enough in the past few days to make up for a lifetime of lost sleep...sheesh.. my eyes are still heavy!

How are you feeling? I've been trying to keep up with your comments and it sounds like you are doing extremely well - that is awesome. You must feel like a new woman?!
Pretty soon this too will be behind you.

Wishing you a wonderful day.

Tessa

Days 4 - 5 progress is still being made
 

Hello All,

So sorry I haven't had a chance to update in a while or respond to the many kind messages you have all left. From the bottom of my heart, thank you!

Here is the official update: So far things have gone really well. Prior to trying this continuous epidural catheter my pain level was mostly pegged at a 10. I had what my doctors refer to as a severe form of causalgic pain or CRPS II. Once they were able to get the epidural placed and running properly my pain levels have mostly been at a 3/4 and up to a 6/7 on 3 occasions. Initially when the pain and symptoms spiked back up to a 6/7 both my husband and I were so disappointed as we thought that meant this had failed. On the contrary!! After talking with my doctor (who is just amazing by the way) he said he is very pleased at the results so far. He said I should not focus on the little hiccups along the way, rather focus on the big overall picture, which is clearly much better today than it was last week when he admitted me. :)

I am honestly in disbelief that most all of my previous symptoms are gone. Now, even when pain is breaking through it is only the burning and the sensitivity not all the rest. YIPPEE!!

My doctor just changed the medication concentration to see if that will help get the breakthrough pain down some more. His plan is to keep fine tuning the medication over the next few days until we can achieve the best affect possible before sending me home.

I am so grateful for my doctors!!

By the way tos8 - it feels great to be almost pain free. I hope that one day you will also have the chance to feel that again!!

Thank you for updating us. I am so very pleased that things are going well for you. It must feel like a dream. We are all pulling for you and I am keeping my cripsy fingers crossed!

lol.. KimA it does feel like a dream!! I was just telling my friend the other day that I should 'pinch myself' just to be sure :)

I'm sorry you are experiencing such terrible headaches. Have you ever tried going on the 'four f's diet' to see if perhaps that would help reduce the frequency and intensities of both? I do hope you are able to find relief soon. Nanc is such a wealth of great information, we are all lucky to have her support!

Soooooooo EXCITED for you T!! :hug:

Sounds like just a couple more days of tweaking and you should be all set. Yes, get rest. Your body is trying to adjust to everything. Sleep is good. :Zzzz:

I am truly happy for you my friend!

Vrae

Thank you Tessa, you are so sweet to say that about me :)

I am so very happy for you and the progress you are making! This is so amazing!! Thanks for keeping us updated! :hug:

Whoot Whoot - We did it!!
 

You all are my HERO's:
A hero is somebody who is selfless, who is generous in spirit, who just tries to give back as much as possible and help people. A hero to me is someone who saves people and who really deeply cares.

This last week would have been so much harder without all of your support.. from the bottom of my heart thank you and now it's....:partytime2:

Wow its been a long week.. 6 days of trial and error with medications but, it paid off we have finally found the correct dose!! YIPPEE YAHOO. It was definitely more difficult than I thought it would be.. for instance 24 hours ago they changed the medication that was in the epidural and 12 hours later, not only was I back in agony but, I was also so numb again that I couldn't walk. We had to try a few different medications so that we would have a plan B,C,D & E... just in case for some reason the one that had been working no longer did. Making these adjustments and trying new meds was obviously much better and safer to do while I was here in the hospital. The plan now is to send me home with this epidural catheter while we await insurance approval & OR room for the final and permanent implant. This means a home health nurse will need be visiting me daily while I have this unit in place. The hospital will make all those arrangements - thankfully one less thing for me to worry about.

How do I feel? I feel great - like I could run a marathon! :) Pain levels at the moment are 1-2 - simply amazing!! The only pain that is breaking through the epidural is the lightning bolt pain that occurs down my leg with every single step I take. This was excruciating and now.. tolerable. There is still the tenderness (like a permanent fresh bruise under the skin) but that is also tolerable. The sensitivity is gone, the burning gone, the bone crushing gone.. etc., GONE!

What medications are in the epidural? Ropivacaine (same family as lidocaine) and a very small amount of fentanyl.

So far the only additional medications I need is Baclofen for the muscle spasms/jerks everything else we discontinued the day I was admitted. Yippee Yahoo !

Do I think others would benefit from this? YES absolutely!!

Now... let's hope I get to go home today. :)

Wishing everyone the best day possible,
Tessa

YAY!!!! Such wonderful news Tessa! So happy for you!!

I hope you get to go home today and get there safely. Please keep up posted!!

Nanc
:hug:

I'm so happy for you Tessa! I hope you are home now and still feeling great!

Thank you Renee! lol.. I had hoped I would go home yesterday :( I'm pretty sure I will today, if not they might have to catch me, because I've already got my running shoes on and those elevators are calling my name! :winky:

How are you feeling?

Absolutely Fantastic!!
 

Tessa,

Awesome!! Thanks for sharing this exciting process...and prospect for future CRPS treatment...for following through on this treatment! I had a temporary(placed in thoracic spine) years ago when it was being experimented with and it worked like a charm for 2 months for my severe CRPS- in my arms. I had surgery that temporarily "cured" me so that "I could get back on the road".:rolleyes: I had better time afterwards and didn't pursue it again til now. I'm also in the severe category of causalgia, now arms worse than legs. However, I also have DDD and spinal stenosis at several levels to compound the issue. At this point I have been offered a pump in addition to a stimulator, but they want me to try the stimulator first...:eek: I don't think my CRPS can handle it in my upper body, so I'm going slowwww. I'm thin and I have a plate from an ACDF cervical fusion. I vibrate already...

So I have choices and am following your journey with hope and prayers that you rock with this.. that you heal into a more pain free existence. I admire your strength and courage!!

May you be well!! :hug: We all want for your success!! :hug::grouphug:

Hana

I secretly wonder if you have any idea at all how brave you are… and check this out, it was ALL worth it! Right on T. I am so incredibly happy for you, you have no idea. You go girl! Your husband and family should be so proud of you! I am sure it will feel great to get back home. There’s just no place like it. :hug:

Hana,

Forgive me, but I didn't understand if you had a temporary epidural or something else in your thoracic spine? I'm curious if you wouldn't mind clarifying? Sorry it didn't last longer for you but glad you had at least a period of relief.

I don't know if you have read some of my other posts but I also have an SCS implanted for almost a year. It has been amazing for me.. just not enough especially since it has spread from legs where the SCS provides stimulation to both arms and to my bladder. I still have it running 24/7 and still grateful that it is working to at least some degree. Its not any different that how meds work .. offering some relief but just not enough for it to work on its own with out further intervention of one type or another. If you have questions about the SCS feel free to send me a PM.

This epidural is amazing!! I feel incredible.. not only because of reduced pain but even better is that this is not causing me to have all the side effects that I had with taking so many pills. I'm only slightly groggy which could be from boredom or from the baclofen that I am still taking orally but, so much better than the daily vomiting, itchiness, groggy feeling etc., that I we all suffer from all the pills that barely work!!

So glad this is giving others hope! We all need that and I believe 100% that this is way under utilized for treating CRPS and can be used in conjunction with additional injections/blocks etc.,

I didn't get out today like I had planned so I was a little bummed out earlier today so please forgive the delayed response.

Wishing you the best,
Tessa:hug:

Oh Vrae - that was like the warmest iHug ever!! lol.. I wish I had made it home but apparently the pharmacy didn't stock the meds that go into the epidural so now I wait until tomorrow.. bummer!

I wonder if you all know how much your kindness, encouragement and support has carried me through when the moments were tough?!! It has been through all your support that lifted me to a place where I could find that strength!! I couldn't have done it without you all.. :grouphug::D

Sorry Tessa that you haven't been able to flee the scene yet, but perhaps a higher power needs to sit on you for another day? :rolleyes: ;)
AND Congratulations on the success!!

I too shared that experience of success with the pump, and it was utterly the best !!.
Mine was implanted for the sake of an extensive surgery that I needed. If I was "cured" by the surgery then I shouldn't need it going forward...? I had no brachioplexus left from the multitudes of surgeries including sympathectomies and rib resection in my chest shoulder and arm. Part of the surgery was exploratory part sympathectomy and more clean out...my case was complicated. The drip would not be enough, no pain patches on the mkt yet, and I had no ganglions left to block..
It was put in a week before the surgery, tuned in the hospital and i went home in bliss before my surgery.. In fact, I felt that I shouldn't need surgery at all. Unfortunately it fell out the night before surgery, and during the surgery they forgot to replace it. I woke up in the worst pain I could EVER:eek: imagine and it took two days again before I could be calm enough to put it back, then the relief was beyond amazing. :Speechless:
It was only for the sake of the surgery that they did it, because each surgery was looked at as it were a cure. haha.. I raced out of the easiest recovery i can remember. I got up tenderly but without anything excruciating. No nausea, vomiting, bad pain constipation ...et al. I barely needed oral meds for anything, only worst break through. I raced up and down those halls.. just itching to fly.. :)....I'm with you on the absence of all of those horrible side effects!!!

I cant imagine having a stimulator and then getting more RSD .... Definitely praying for this to not do that to you, and that you have no new side- effects. What the doc has told me now is that the risk of it being put up so high T2-3 is risk to breathing if there is complication.. so that is my consideration,
I am definitely interested in your stimulator experience also in regard to this, and would like to PM you, thanks. I'm a little slow from a TBI so please bear with me all. I was once a fluid writer. :Doh:2 working fingers and a TBI with a non-multitasking ability changed all. So, I can't take anything for granted!!!! :D Life is a good ***** (or beach)...if you don't mind my saying. Sorry the long.... post.
I will post my own thread with greater response, eventually, but I am slow.

Now Tessa. Please go forth gently until it all cements. And then fly girl fly. We are so happy for you this great opportunity.:hug:

And all, pray you can rest and heal, finding relief from your pain.. :hug::grouphug:

Hana

OH Tessa, I am so happy for you. All I can think of is tinkerbell and how happy she was when she flew and with the golden glitter around her and the stream behind her. May your days be as golden Tessa but go with caution when they open the gate. Hugs and best wishes.