since i last posted, my doctor and i decided to try a tunneled epidural catheter. i am having the procedure done on june 6th, right after i finish up my summer class. he says that i have lost a significant amount of muscle in my bad leg, and that this will allow me to do the therapy needed to build it back up. i am willing to try anything, but i guess i dont fully understand much about the procedure. he didnt go into that much detail, so what im wondering is what will he be doing? i dont know if hes going to cut me open or what! so im kinda getting freaked out. i know ill be in the hospital for a few days, but i love hospital food so i guess it wont be too terrible.

i just got a call for an accounting internship (just finished up my junior year of college) and i have an interview next week. im wondering if this catheter will prevent me from mentally performing at the best of my ability? i know i will be on pain meds but i dont know how this will affect my ability to work with numbers and stuff. have any of you ever had this procedure done? and if so, did it make your brain turn to mush? i guess im just afraid that if i DO get this job, i wont be able to think straight and they'll wonder why they hired me.

one more thing... because lyrica hasnt been working AT ALL, my doctor told me to wean off of it and i followed all of his instructions in doing so. ever since i stopped taking it completely, i havent been able to sleep. and im the type of person that usually sleeps between 8-10 hours a night!! no matter what i take... nyquil, tylenol pm... i just cant sleep!! its the worst thing ever. and i have been feeling hot and cold.. almost like i have a cold or something, but then the symptoms seem to go away. maybe im sick? maybe im not? any ideas?

I'm sorry that I can't answer the question about Lyrica, but I have tons of experiences with TECs. I've had six of them, a few which were long-term ones (in for 2 to 3 months each).

First, as to whether the pump will effect your cognative performance, that depends on what medications are used. If it's just bupivicaine, then you should be able to function just fine. I was fine with both bupivicaine and Clonidine. Some doctors add other meds, and I can't tell you how it might effect you if your infusion contains something like Fentanyl or anything else.

I don't remember the procedure itself as being too bad. There's a small incision on your back, like an inch and a half long, where the catheter is placed. Then it's tunneled under your skin and around your side (at least mine were, but I think they can put it where you want it because I used to specify). Where the catheter comes out, you'll have one stitch holding it in.

I was always kept overnight, hooked up to a big pump. I was generally a bit sore for the first few days. The next morning, I would get the small pump and get all hooked up to that. There's a lot of equipment, and I recall a lot of medical tape being involved in the process. I wore the small pump around my waist in a fanny pack---not fashionable, but a lot better than that ridiculous pole they use in the hospital.

I was kept on antibiotics the entire time my TECs were in because of the risk of developing meningitis. I was usually given a few doses of IV Vancomycin in the hospital, and sent home with oral antibiotics. You'll have instructions as to what to look for in case of infection. Just, if you start to feel sick DO NOT HESITATE to get checked out, because bacterial meningitis is obviously a really bad thing.

I had a home healthcare nurse who came over two or three times a week to change the bag of infusion medications and to change my dressings. The tape sucks. I had rashes and skin problems from all the tape used, so make sure to look out for that!

Another thing to be careful of is numbness in the morning, especially if you sleep on your stomach (and if your RSD is in your leg). The medication tends to pool while you sleep, and I had a few problems of not being able to feel my leg when I woke up in the morning. I remember falling at least once. That clears up within an hour or two of being upright.

So, since I had so many of them it's probably needless to say that I had some good results from TECs. I had RSD in my left leg and right arm, and my second TEC (2-month-long cervical) put the RSD in my arm into remission. I haven't had problems with it since. The TECS helped improve both the function and pain in my left leg, but it's not perfect and that's something I've come to accept. My leg was untreated for much longer than my arm, and when I really think about it, it's pretty cool that I can walk on it at all.

Oh, and this was all several years ago (while I was in HS, now I've graduated from college), so it's possible that there are newer and smaller pumps or something.

Good luck, and if you have any more questions about TECs, feel free to ask!

-Betsy

I had 2 of these done, but i was in the hosp for a week with them.. I wasnt sent home with it. I LOVED LOVED mine!! and would kill for one right now. The only thing i didnt like about it was while i was in the hosp with the epidural, i had little to no control over my legs.. which is good bc thats where my RSD was , but i couldnt walk at all or use the bathroom by myself.. soo. but it was well worthe the week of being pain free.. just be prepared that once the catherter is out, and the meds wear off.. the pain might come back and it will come back ten fold. Thats what mine did, only bc i was way advanced in my RSD and it was just a shot.. but i did it twice just to see if it would reset everything... but no luck..

GOOD luck with yours and its not cutting your back at all.. just like a regualar epidural just put a needle in your back and thread the catherter through and then tape it all into place and then hook it all up to the bag of meds.. It was a breeze~!!

Any more Q's ask away!!


Amber

back in 2002 i believe....... the tunnelled epidural catheter was placed, but i was not kept in the hospital................scary when you really think about that....................i was sent home, and had to return to the hospital for new meds in the 'medicine ball' every other day, and they redid the dressings on my back and also made sure there was no infection.............which i was very fortunate that i never got........i took antibiotics for the first week, then off the next week, then on again the following week, and off again for the final week.............yep, four weeks of this.............no showering, no driving, altho i did........it was very uncomfortable, not painful tho.....................but....the relief i received was good........it took about a week for the relief to really kick in tho.............maricaine, and buprovicaine and one other i can't really think of right now..............(sorry i just got home from florida and have not got my **** together....lafff )

i feel that the tunnelled epidural cath and the blocks that i recieved have given me back the relief i have today.........i am at a tolerable stage, thank goodness................

i went to therapy and was able to move my leg around a lot more than before the cath................

good luck with your cath, but i am glad to see that they make you remain in the hospital for a bit.............i would go through it all again if my pain warranted it again tho.....................

i had my catheter placed in on june 7th (thursday) and it was torture!! i would never go through it again i was supposed to have it done on the 6th, but my docs scheduled changed... because of that, i had to stay in the hospital 5 days!! they didnt release me until monday because none of the home health care people at the cleveland clinic worked on the weekend.. so if i would have actually had it done on the 6th, i probably would have been home before the weekend. and to make matters worse, they placed me on the floor with dying cancer patients. i overheard someone saying "no one makes it off this floor alive".. i bet they definitely thought i was wearing a wig.

the procedure itself was very painful. i think i said every bad word in the book, followed by me screaming bloody murder for about 30 or 40 minutes. you would think they would sedate you more, considering a huge needle was being pounded into my spine (or so it felt like it). i had severe head and back aches the whole time i was in the hospital. they were more worried about that than my leg. also, the antibiotic they placed me on made me very naseauted for about a week, and then they finally gave me the OK to get off of it. yay!! no more feeling like im going to puke all day long!

my back is still killing me, but atleast my leg isnt! that's the only good thing about all of this.. but once the catheter is taken out in august im sure the pain will be back. i hope not!! ive been working my butt off at physical therapy, and doing other exercises when im not there. i definitely think ill gain some of my muscle back.

i go for my first dressing change next week and a home nurse comes a few times to see how im doing and to change the med bag. the worst part of this is not being able to drive and shower... even though ive been insta-bathing, i would definitely be the stinky kid at school!! the weather has been sooo beautiful here and my pool isnt getting much use i guess im not allowed to drink either, and considering this is my first summer being legal im not having much fun!!

sorry to ***** and moan, but sometimes i think i would rather have my leg pain back than go through all of this.

Hi Katie,

Thanks so much for telling us how it went, but sooo sorry it hasn't gone that well - don't know much about the procedure myself, do you think they didn't do it quite right? Cleveland Clinic? We've had some not-so-good reports from there before...

Hope you feel a lot better very soon, thanks so much for the update!
all the best

Katie I am so sorry for all the pain that you went through!! You would have thought that they would have at least sedate you!! OMG Katie! Artist and Katie, I am due to go up to Clev. clinic in Sept(They are trying to bump me up further) My surgeon, that is, Now, I am scared!!! darn!! Desi

my mom is friends with a few RN's and they said that after this procedure you are supposed to stay laying down for the rest of that day. i had the procedure done at about 4pm and i was sitting up straight as soon as it was done. the laying down is supposed to prevent the terrible headaches that they warn you about before you go in for the procedure.. so it kinda made me wonder after hearing that. im not going to say anything terrible about the cleveland clinic, but i really liked going to my orthopedic surgeon down in pittsburgh. too bad he doesnt treat RSD!!! desi, what doctor are you seeing in cleveland? i wasnt happy with my doctor at first, but im kinda getting used to him. at first all he did was try about 6 different medications, but finally he is more open to trying different procedures. he said if the epidural catheter doesnt show results, he will try some kind of neurostimulator. he is a bit hesistant with trying that because he said i am too young. he also doesnt have much of a personality, but i guess if i was 70 some years old i wouldnt either!! another doctor in the hospital said my doc is 'known around the world for his work' so i guess im in pretty good hands. i was kinda shocked that my doctor didnt perform the actual procedure. some other doctor below him did the whole thing.. i think i saw my guy for about a total of 2 minutes during my 5 day stay there!!