Thanks Hana!! I'm hoping to be set free within a few hours. Getting ready to pack up the laptop (hopefully that won't jinx me - haha) etc., so I am ready to hit the ground running.

I just wanted to clarify in case I mislead you or anyone else with my post about the SCS. I did not have spread from the SCS at all. The spread I had to my opposite leg and arms started before the SCS was placed and just continued to get worse with time. The SCS actually works better on the areas of spread for pain relief than it does for me at the original site of CRPS II. Also - I have extensive nerve damage that caused the CRPS II and it is in an area that is constantly being aggravated which is in part why things have spread so rapidly.

For this procedure it does not involve a 'pump'. It is actually an epidural that when the permanent one is placed will be tunneled under the skin from the spinal canal and then over my ribs there will be a port for where the medication bag will attach to.

I sure hope you are able to get some relief - you've been through so much!! Stay strong

OMG.. that just brought a smile to my face!! How could you have possibly known that my next big run (if this works) is going to the the 'Tinkerbell 1/2 Marathon" in Disneyland! I will have wings, glitter and all In fact I am already planning a little hike with my girl friends on Monday or Tuesday as long as this continues to work as well as it is at the moment! I had just sent them a message about it and they all emailed back asking if I was crazy or on drugs for even thinking about that when I'm still in the hospital... hahahaha Gotta dream BIG

Thank you for your kindness and for making me smile - I hope today brings you many smiles and blessings in-spite of all pain!

-Be as well as you can be,
Tessa

Hey Tessa, I hope you're doing okay and will pray that you continue to feel better every day. I admire your courage and strength. PS I never congratulated you on your football team winning the superbowl last year. At least one of our teams did good. lol. Take care my friend.

Well Tessa my friend, your post not only brought me smiles when I read mine and yours together to my wife we both laughed yep.....laughed so my day had smiles thanks to you. Remember the old proverb, maybe it's not a proverb but, if you don't use it you lose it. You be careful before taking off to fast without someone close to you, K? You haven't run or jogged in a long time. I'm so glad your not only seeing that light at the end of the tunnel you're touching it !!! yeeeeeeeeehaaaaaaa!!! thanks for the happiness tonight Tessa, hugs and smiles 4ever.

Hello All,

I was finally released last night at about 5PM - thank goodness because I was nearly ready to bolt without permission

Trying to figure out the best way to describe how I am feeling today - Delighted, Thrilled, Deliriously Happy, Elated, Cloud Nine, Over the Moon are just a few of the words that come to mind that describe how blessed I feel right now!!

This was a huge success!! My pain is down to a 1/2 throughout the day and only spikes to a 3-5 maybe once or twice in a 24 hour period for a short amount of time. That usually occurs with loads of stimulation or walking for more than 15 minutes but is easily calmed with distraction/focused imagery. Prior to this continuous epidural I was only sleeping 20-30 min at a time, I am now sleeping 2-3 hours at a time and getting back to sleep is effortless now. Before the CE I had constant burning, muscle ripping knife pain, crazy bone pain, extreme sensitivity to even exposure to air without even a breeze, muscle tenderness like a constant fresh bruise, rashes, swelling, muscle spasms, electrical shocks that felt like lightening bolts etc., Now the only pain I still feel is slight burning, slight sensitivity in the worst leg and the muscle tenderness in the worst leg and the spasms are still present but not as severe. All of the other symptoms are completely masked by the CE!! YIPPEE YAHOO - life is so much better! The only medications I am still taking is Baclofen and Hydroxyzine.

The cons - I have to carry around a backpack which hold the medication and infusion device until they surgically tunnel the epidural cath-a-port. I will still have a small shoulder pack to carry around but it will be much smaller and easier to hide, that will be nice. Once the permanent is placed and working well the goal is to attempt to turn the meds down or even off for short periods of time to see how my body reacts. Obviously it would be great if one day I would no longer need it but, the reality is that we just don't know if that will happen but the goal and hope will be that it can. So I will stay focused on that possibility

My main reason for trying this was obviously because of the amount of pain I was in but, also because I strongly believe that many of us suffer far more than what we should due to the lack of information on available treatment options. I also believe that many doctors simply have given up on offering anything more than meds because treatment can be so time consuming for them and with the many failures many have just given up hope themselves. It is simply easier to throw useless meds at patients.. sadly. During my stay at the hospital I talked with many nurses who have seen the suffering we endure in other patients they've cared for and in watching the change in me at least 2 of them contacted the doctors that treated them, to put them in contact with my doctor in hopes they these people might have the same results. That is incredible!! My doctor is extremely pleased at how well this has worked - we both took time and detailed each an every step along the way so that it may help others - I am so thankful to have such a truly compassionate doctor!

If anyone has any specific questions I am happy to share more details of this whole experience.

The next step is the final implant which will hopefully happen in the next few weeks. We don't see any problems with insurance approval but it may take a week or so to get it. Hopefully the next hospital stay will be shorter and the last one for a very, very long time.

Thanks again for all your support! I'll keep you posted if things change for better or for worse as I go along.

Have the best day possible,
Tessa

This is just simply amazing Tessa! Thank you so much for sharing this journey with us. God knows we NEED the information! More importantly I am so happy that you will be getting some of your life back. How awesome is that?! Just in time for summer too.. hell yeah! That’s fantastic!

Hang in there while you get the last of the tweaking worked out. Once everything is all done, I feel sure you’ll be enjoying things you haven’t been able to do in quite some time.

What a lesson you are in not giving up and how attitude is everything. I admire you T! Atta girl!

Hello All,

I thought I would give a quick update on how this is working out for me. It's been 22 days since the Continuous Epidural Catheter was placed and I've been absolutely amazed at the results!! I went from a constant pain level of 8-10 down to a level of 1-3 and sometimes even 0 yes... 0. This isn't like with meds where one symptom is gone and the others remain.. all symptoms have decreased significantly.

I've gotten my life back. My mind is much more clear now that I am sleeping better and not taking oral meds (except Baclofen). Ah.. my husband is also sleeping better for which he is most thankful. My energy levels are increasing and I've even managed 2 small hikes. I've been limited in really pushing things while this temporary epidural has been in place as they don't want me to dislodge it. That will change after tomorrow..

I just got word last night that my permanent implant (tunneled epidural catheter w/port) will be surgically implanted tomorrow morning at 8:30AM.. Yippee Yahoo.. I can see a shower in my not so distant future 22 days of sponge baths is toooooo long. I am nervous and excited. This truly is amazing, I am so grateful for my doctors!!

Wishing the best for everyone,
Tessa

Tessa, I am so happy for you! Best of luck tomorrow. I will keep my fingers crossed for you.

:Hug:

Oh KimA, thanks a bunch. I'm sorry and feel a little guilty for posting such happiness when you (and many others) are having such a hard time. It sucks and I'm sorry that you are having such a bad night. I hope you are able to find something that helps. I wish that for everyone!!

Tessa, don't feel guilty. Your post has actually cheered me up. You have brought a bright spot to a bad night. I am genuinely smiling now. So, very sincerely, thank you for sharing.