still waiting!

[DanaW]

Hi everyone! I have been anxiously waiting for the phone call from the pain clinic. This is going to be my first visit. (if they ever call me) Can you please tell me what to expect? Do they do a complete physical or more tests? Do they take over the prescribing of meds right away or do I still have to call my uro? I would really like to hear some of your stories. Thanks

[Dixiefireball]

what they did to me was i went in filled out alot of paper work talked to a rn then waited on the doctor and he asked a hundred question my uro had already faxed him my paper work and he changed my meds then.
then we planned what to do the following week i went back for a nerve block i told him the pain meds was not working. so he changed them again but everytime he changed them i had to go into the office. banghead finally i gave up my uro takes better care of me and understand ic better then they did for me. I hope you go to a good pain clinic that understands ic and can help you more then this one did me.
sending you hopes prayers for a better tomorrow
Rhonda

[DanaW]

thanks for repying. I am not so sure that they have ever treated an IC patient before. I am the "first" referrel from my Uro. That alone makes me nervous!! They are supposed to call me tom. with my first appt. Thanks!

[ICNJess]

Hi Dana,

Was wondering if they called you??

Hugs and love,
Jess

[Julie Smith]

My uro referred me to pain dr. whom I have seen 2x. First time lots of paperwork and changed meds. I had a reaction so I went back the next week and he changed meds again. I return tommorrow and will tell him the meds knock me out and i've been in a fog. at least with the valium and maxidone from urologist i could function and not sleep all the time. Also, changed antidepressants so last 3 wks. have been sleeping. Some days i didn't even shower which isn't like me at all.

He said there are LOTS of treatments so i'm extremely anxious to see what's next. banghead

[Zipper]

update

[DanaW]

Thanks for your replies. Jess, I still havent' heard from them! She told me last Friday that I would get a call on Monday. I really think that I am their first IC'er. Do you think that they can do a good job for me, if they have never treated someone with IC? I do know that the receptionist said that the Dr. would be looking over my charts last Friday. And, she said to me, "you have quite a history" . I wanted to say Well, yeah....that is why I coming to you people!! lol I am going to call tomorrow and find out what is taking so long. frown

[DanaW]

Does anyone have a good story to tell about their pain clinic??

[Kimberly31]

Hi Dana,

I can tell you that it really all depends on the Dr that you go to. Dont be dissappointed if you dont like him/her dont give up either just keep seeing different pain drs and you will eventually find one that is good and understanding to your problem.
I have a very very long history myself have had 9 abdominal surgeries over a 10 yr period and boy as far as drs go nothing surprises my anymore....lol But i do have to say that I finally did find the best pain mgmt dr and I have been seeing her for 7 years and that was way before I was diagnosed with IC dont even think I had it until about 2 years ago. Anyways my point is that you have to remember your patient rights when you go in to have your consult. Dont be affraid to tell him how you really feel or how bad you really feel cause if you dont they will not be able to treat you properly.
Hang in there and I wish you much luck.:p
Pls, keep in touch and let us know how everything went we all really care very much:D Your not alone just keep remembering that.

[Dixiefireball]

Your doctor should send the clinic some notes on you and the pain clinic doctor should go over this and talk to your doctor and both of them together should decide what would be best to do to treat you.
sending you hugs and prayers for a better tomorrow.
Rhonda.

p.s
Please let us know when they call you. You may want to call them that is what i had to do.:(

[DanaW]

I really can't believe this one. The Pain Clinic told my Uro. that they can't help me! I was totally shocked! I knew that I was their first patient with IC but, to turn me away? I talked to my (wonderful) nurse about it yesterday and she was shocked too! So, she told me that my Uro. will do whatever is necessary to help me. So, I am scheduled to see them on Monday. I think they will prescribe Neurontin next. I also need to get my meds changed or something. I am having to take 2 Percs every 4 hours and it barely helps me anymore. And, I don't like taking all that Acetamin. I know it is bad on my liver. Has anyone been turned away from their pain clinic before??

[Ginny]

Never been turned away but I have turned away a few of them myself. I have never really found one that helped me. Hope your experience is different next time around.

Ginny

[franya]

Dawn,

I hear you but you know what if that pain clinic does not know anything about IC they will be wasting your time they would not treat you the best way for IC. I had a uro refuse me. A lot of docs do not want to deal with this disease!! I just left a clinic where they did not know about IC they told me I would have to learn to deal with the pain and don't be a crybaby I just left for a new one hopefully they will help. Demand pain med it is just not fair

Franya

[DanaW]

That does make sense what you are saying. But, I guess I just thought they help with treating chronic pain. They are supposed to be experts at pain meds. I am going to visit my Uro. on Monday. I am going to try Neurtonin. Hope it helps. Thanks for the feedback

[Ginny]

I think at this point in my life if someone called me a crybaby I would turn around and sue them. I am not in favor of suing and I have put up with a lot in my life but this is absolutely uncalled for.
I'm sorry you had to go through that. It is certainly untrue.

Ginny

[franya]

Hi,

Thank you both I thought about suing and I realized that it would be my word against his and we do not have to guess who would win!!! I know how you feel about the pain clinic supposed to treat chronic pain but some of them don't treat it as good as others. This disease we suffer from is not very popular and the docs do not care to educate themselves about it I think some of them do not even believe what we say are true and think the pain we feel is excagerated:( I have had such bad luck with Docs and pain clinics the things people have said and did to me are unbelievable. I stormed out of one when he said "if you think you are goinng to walk in here and get percocets you are very wrong" I did think that was what I was there for considering it was a pain clinic!!! I reported him to the medical board so at least he has it in his chart. I am going to a hospital clinic now that has Docs that specialize in this disease so they are well aware how to treat it!! YOu should look up that kind or pain clinic. Take care good luck

Frannie

[Julie Smith]

To Dencie and all:

I read some of you have had a nerve block, my question is >>>Also, so far, no one had good results from nerve block??? How awful.

Has it been a sacral nerve block?? or/and does anyone know how to find this website???? I just started seeing pain dr. and he said this sacral nerve block provides the best relief for ic.

Thanks for your input,
Julie:confused:

[franya]

Sorry Julie,

I had no and I mean no relief from the nerve block. I just sat there after the operation and was in pain. It never took!!

There is some thing out there we just have to keep looking. Notice I said we!!!

Frannie

[Ginny]

I had 5 and no relief at all. Not even that day. The new pain specialist I just went to said he wants to do them. Maybe the other guy did not do them right was what he said. I am not doing it again, only because I have diabetes and it will raise my blood sugar. My point is, they all want to do this. I have no idea why.

Ginny

[Julie Smith]

Franya and Ginny,

Thanks for your replies, yes we'll get through this together! I'm really sorry nerve block didn't work for you. Do you know what type of nerve block you had? There are several different types. It's funny, I can locate pudendal nerve entrapment nerve block and hypogastric plexis nerve block but not sacral nerve block.

My pain dr. who also is a anatheseologist said he treats a lot of ic patients and has good results with the SACRAL NERVE BLOCK @ S 1-5 which innervates the vaginal/bladder. I'm willing to give it a try, were all different and I may get lucky, really counting on it.

Let's keep talking.
Julie:)

[Ginny]

I'm sorry. I do not know which one it was. The needle went into my lower back. I was put to sleep for it. I had it done once a week for 5 weeks. That's all the info I have for you.
Hope it works for you.
Ginny

[Julie Smith]

Dencie,

Just wondering how you are doing after your nerve blocks and how many you've had and what type it was. The reason I ask what type is bc my pain dr. recommends a sacral nerve block. I'm ready to try bc I want some relief. I think you're one of a few who got relief from block, many people on the board didn't.
I feel so badly for those that didn't get relief. This disease sucks big time.

Talk to you soon,
Julie:hi:

[franya]

Hi Guys,

I love to hear from you. I do not know what nerve block I got. But I am sure I got the right one. He knew what he was doing. It will be nice to keep in touch.!!!

Frannie

[Kimberly31]

Ok Ladies,

I just had my 3rd sacral nerve block. There are a couple different ways of saying the same block. One is: Lumbar Sympathetic Epidural Blockade and the other is: Sacral Nerve Root Block. This particular block also can be called a Caudal Nerve Block. The word Caudal evidently comes from it being that the injection is injected right at the very bottom of the tail bone. It is really really low sort of at the top of your butt. Dont quote me on this but, the difference from what I understand is the Lumbar Block is right at the actual S-I joint lower back. The Caudal Block is much lower kind of at the crease of your buttocks. I did alot of research on these types of blocks for my pain mgmt dr and sent her the info on it she had never done this type of procedure for the Diagnosis of IC.
I have had a series of 3 yesterday was my 3rd. And I have gotten sooooooooooooooo much relief from them. After the first one I didnt see too much relief just a little bit. The second I did really find quite a bit of relief. Just for a example I have been having a terrible time with IC flares and UTI infections and I am on Antibiotic Therapy most of the time when I get a full blown infection I cant hardly get out of bed and since having these Caudal Blocks I have been able to go to work in the middle of a infection so to me they have worked really great.
I know that maybe some have had the Lumbar or Sacral block and havent gotten much if any relief but I truly think it makes a difference when they inject even lower in the nerve. This is a steriod that they inject and most Dr.s say the can do no more than 3 blocks a year because of it being steroids.
I hope that some of this info can help someone and just to let you know also I was totally put to sleep at the time and with some drs you really have to demand that. I have been seeing my pain mgmt dr. for so long that she knows she has to put me all the way out for me to let her do a block like that. Naturally your backside is sore for a few days but it has been totally worth it to me. I dont have any idea though how long it will last but I know that you all agree that any relief is worth it no matter if it only works for 2 months.
If you have any questions or anything feel free to email me at kimberlyntexas@sbcglobal.net
If you would like to know where I got some of this info please let me know and I can forward the address to you.
I hope you all find pain free days,,,,,,,,,,,,,,,,,,,,,,,,,,,,:angel:
Kim

[Zipper]

Hi all--
Sorry I couldn't answer sooner. My experience with nerve blocks was awful, but after reading the previous entries I'm hopeful. I investigated a new pain clinic and am going there to try to figure everything out.

I did two hypo-plexus something or other nerve blocks. I was awake and felt everything each time and it was awful. It was SO painful and only worked for a couple hours each time. And to make things worse it initiated a giant flare each time.

But, my doctor just prescribed Neurontin and it's practically working miracle. I am so happy with the results. I just started it this past week so I feel the sleepiness etc. but that is supposed to wear off. It's SO helpful and I really feel like it's giving me my life back.

:) Decnie

P.S. Thanks so much for asking :)