Intro - Interstitial Cystitis Network Support Forum

Dianne · 11-15-2000, 10:02 AM

Hi everyone, my name is Dianne, I'm an RN living in Montana, working in OB at a community hospital for 28 yrs., diagnosed IC for about 6 years, presently using diet control, and the SANS unit. I'm the best I've been in 6 yrs. at the moment. I called Jill today with a question and before I hung up, I found myself your new moderator for this board. How'd that happen? LOL I'd like to get some good discussion going on this board so for starters, maybe we can find out who's on this board. How about some bried intros?

***icnmgrjill*** · 11-15-2000, 10:39 AM

testing

Lorie · 11-16-2000, 12:05 PM

Welcome Dianne

I am new to this board also. I am a licensed Mental Health Therapist in NJ. Have not worked for 2 years because of IC. I will start a telephone therapy job next week. I am very excited. Had to give up face to face sessions because of frquency & pain. I am very interested in trying SANS. Hope to convince my uro,who is opening a new office closer to my home to offer this service. He would get alot of new clients. I do not know of any Drs. that do SANS in NJ. This board is not very active,so happy to see your post.

Lorie

Dianne · 11-19-2000, 02:31 PM

Welcome Lorrie! If I can be of any help re' the SANS unit, let me know. There is no one in Montana using the SANS unit. I got the pain clinic doc (personal friend) to agree so we ordered and followed the directions. It's quite easy actually. After 8 office treatments, I took it over myself. I know my Dr. would be willing to talk to anyone if that helps anything. I am sleeping 5 hours most every night now and sometimes 6. Wow!

Lorie · 11-20-2000, 02:50 AM

Dianne

Thanks . Hope my uro will agree to try SANS on me. I am very excited for you. I would be thrilled to sleep 5 hrs. I am starting my phone counseling job this morning at 10:00AM. I am very happy I can work again. With SANS,if it works well for me, I may be able to have a private practice again.
Have a great day.

Love&Huggs

Lorie

Lorie · 11-22-2000, 03:34 AM

Dianne

I recently found out that the company that mfgs, SANS equipment has gone bankrupt. I e-mailed Jill&Diane to see if they have any info. Do you know anything about this? Any feedback would be appreciated.

I have been referred for interstim,and would prefer to try other less invasive procedures first. What is your opinion about interstim?

Have a great holiday

Love&Hugs

Lorie

Dianne · 11-22-2000, 10:51 AM

I've talked to the company within the last couple of weeks. My understanding is a buyout is in progress which was expected to complete last summer but didn't. My contact is Steve Preiss stevepreiss@home.com He usually answers really quickly. He's still getting supplies for me. As for interstim, I just couldn't see a reason to go invasive if 1/2 hr. a week less invasive would get the job done. As an RN, I was thinking about the possibility of infection and so forth in the spine, plus I've heard it was so painful, that I was never interested in interstim. I'm really happy doing what I'm doing. Good luck.

Lorie · 11-22-2000, 12:30 PM

Thanks for feedback. I want to avoid interstim if I can,especially while it is still so new.

Love&Hugs

Lorie

Dianne · 11-23-2000, 09:43 AM

Interstim isn't an option in my state yet. I don't really have any qualms about interstim being safe though. My decision was based in that my worst symptom is pain upon filling. I get total relief with voiding but only for 10 mins. My frequency/urgency is normal now with strict diet control. I had heard that interstim was more for frequency/urgency than pain so didn't think I was a candidate anyway. Even if I went out of state, it would mean a trial, then surgery later, and what if it malfunctioned? We have snow about 9 mos. out of the year. It's not like I can jump in a car and make it to another state. It's a whole days drive in good weather. Since the SANS unit is so economical and not really anything that can go wrong, it seemed like a good experiment to find out if it worked for pain and lo and behold, it really does lessen my pain.

Lorie · 11-23-2000, 12:29 PM

Dianne

Jill called Dr, Stoller,in my behalf and he reports that a new co. is indeed purchasing SANS and he will send her a press release soon. GREAT NEWS

Thanks for your support.

Love&Hugggs

Lorie

Dianne · 11-23-2000, 02:38 PM

Great news, Lorrie. If you ever need to discuss by phone, email me privately and I'll send you my number. Dogs4@initco.net

***Julie B*** · 12-12-2000, 02:15 PM

Hi Dianne, welcome! I am Julie Beyer, a dietitian in Michigan. Glad to have you here..and thanks for moderating the board!

Angie · 01-04-2001, 12:42 PM

Hi Dianne - thanks for offering to moderate this board. It's taken me a while to see your message, what with Christmas and everything. My name is Angie and I work as an RN in the OR in Sheffield, England. I do mostly orthopaedics, but I also do some urology as well.
Love Angie
xxxxxxx