thinking hard or hardly thinking at all?

[lexur]

I just had a bunch of tests....and now my uro has told me that I have text book IC but he thinks my pain is from my pelvic floor muscles, which is irrating the IC and my Endo, oh and now I'm having probs with my bowels...so it kindof makes since to me...he drew this conclusion from with results from a hydro/cysto/biopsy and urodynamics he himself did. And also my last uros tests (potassium, cysto and hydro and treatments:DMSO, Heparin, and anti-biotics...and I'm bipolar so I'm already on the psych meds)

So now he is wanting to do interstim, honestly when he suggested it, I was excited I told everyone that it could be the best thing to ever happen :woohoo: or it could be one of the worst :cussing: , isn't any treatment???

But then I got on the net and starting looking into interstim, I didn't realize it was sooo controversial,

I have an appt with my uro to ask the essential questions but I'm wanting to know if anyone has went through the same type of thing...does it sound like I've covered my bases...Is it something I should do at 23. I mean ever since all this started my relationship is going down the tubes, my 3 year old is getting unruly(some times I can't control her, the pain), and I've been isolated from my family b/c my mother is mad at me...I guess...that's a whole other rant....

I need something to work for me, or I think I'm just going to lose it.... :loco:

(oh yeah...I haven't tried elmiron, my insurance won't pay and I can't afford rent and utilities let alone come up with an extra $300 a month)

I'm against the wall :headbang: , I just don't know whether to climb it, turn around and travel another path or just sit and waste away....i think i'm stuck in this third option....

any response would be greatly appreciated....i need some group desperately....thanks for your time, and energy...(sometimes it's hard to come by)

many blessings to you and yours,

[massagedoula]

I replied to your thread under Neuromodulation...

[green_the_fish]

Hi there, Lex.
I'm sorry I can't help you, but I don't know much about the Interstim.
I just thought it was interesting that we are both bipolar. I was recently diagnosed, but I've had symptoms for a while. That's pretty tough in itself. If you ever wanna talk about it with someone, I can give you the name of a good BP support board that I've been go to.
Well, I wish I could help more with your particular concern, but I can't.
Good luck in whatever you choose :)

[lexur]

please post the bp info...mainly i just need counseling, just moved to columbia mo and I haven't to see a psychiatrist yet...but i'm scheduled this week...the 14th.....now if i can just make myself go....:0 that's always the hardest part....especially with new doc....

[~*~Christine~*~]

From what I’ve heard interstim only works if your urge to void often is not caused by pain, and since it doesn't help with pain it may not work for everyone. I've also heard of some problems associated with it including seizures so you may want to do a lot of research before agreeing to get this done.

[ICNDonna]

The interstim is usually not even considered until all other available treatment options have been tried and failed.

If you're considering it, I suggest you research thoroughly first.

Donna

[lexur]

thanks for the information and support...i'm in some dire straits right, and everyone's kindness is very solacing....

[tigger_gal]

lex,
have your doctor write to or call your insurance company and tell them that this medication is important to your health.. gggrrrr I hate insurance company's..... Interstim is a hot topic.. have had mine over 2 years and love it.. but there are some that it just didn't work out for them. if you choose to do it, there are pros and cons. make sure you research and go to medtronic and get there free info sent to you.
Brat

[traceann]

Hey Lex, I agree with Brat, have your doc write a letter or something. Or have them help you fill out the paperwork for the patient assistance program that Elmiron has to see if you can get the meds for free, since your insurance won't pay for it and your income won't allow it! ;) I would definitely try an oral med first, before resorting to the stim, as Donna said, that's usually a treatment that's tried when everything else has been given a shot!

Hugs! :)

[lexur]

Well I have applied to 4 different rx plans to try to get the elmiron, and my uro has been more than helpful....He called my insurance(Medicaid) with speaker phone (so that I could hear) and they flat out told him NO. He has even filled out these forms trying to get free samples so he can give them to me...that's not working.

And I got a rejection letter from one of the plans...They won't help me b/c I have insurance...I'm just about fed up :cussing:

But I go to see my uro November 9th for a consult and to see if we made head way with these rx plans...and I'm still scheduled for interstim on November 15th...


Does anyone know anything about med insurance that I don't or maybe another rx plan that helps low-income, I've applied to Merck and J&J(they have 3 different programs). Any assistance would more than appreciated, I'll name a star after you... :woohoo: or I'll find something...:P

thank you so much,

many blessings,

[green_the_fish]

Hi Lex, I just sent you a PM with the BP info.
You know, it's pretty jacked up that they wanna shove the interstim on you so quick! I don't really know of any good insurance programs, though. Personally, I'm on Medicaid, but that's not going to last very long anyway.
I hope this stuff will work out for you, somehow.

[Libby13]

I have an Interstim and could not possibly be happier with it. I had the ulcers in my bladder and an almost complete inability to urinate before the surgery. I had to self-cath inorder to relieve the retention, but that did nothing to alleviate the urgency/frequency stalking my daily life. After the surgery to place the trial stimulator, while still in the recovery room, I was able to urinate on my own for the first time in 8 months. I could not get the permanent fast enough. You have nothing to lose by trial a chance. It is minor surgery. I was awake throughout (I chose IV pain meds and a local). Pain was minor (compared to IC). And relief was immediate for me. My doctor suggested it would work in a few days after the swelling subsided. I gave it a chance and I feel like this machine gave me my life back. I still have pelvic pain, but the burning is gone and every other issue related to IC is managed with the Interstim. I can throw away my cath's. I don't need the instillations at all. To be honest, I would have settled for less. This feels like a miracle to me.

I am a very active person and I did too much too soon after surgery, so I needed to have the lead repositioned to a more secure place. It is in an even better place now, and I feel better than I have in months.

Check the website www.medtronic.com They will send you a video. You can conference call with questions. Write down everything you want to know and ask your doctor. I am not a fan of surgery as a panacea, but ask yourself "What do I have to lose?"

[lexur]

well...I had my implant/implanted the 22nd of last month...and I am so happy with it; my recovery time is a bit rough especially with a 3 year old but the benefits far out weigh the cons...I CAN PEE without a peice of plastic!!!! OMG it's great, I haven't had to catherterize myself in almost 3 weeks. I was having to at least 4 times a day..I have only had 2 bladder spasms, since the stage 1 surgery which was on the 15th. I'm really happy with my descion, one of the hardest i've ever made but I think I'm gonna be okay...

I just wanted to let everyone know, I haven't been close to a computer, resting and all but I'm doing well...my post op is Dec. the 7th, I'll let everyone know how that goes...Thank you for all the support and information, You'll never know how much you all have done for me and my psyche...THANK YOU!!!!

[traceann]

Lex, I am so glad to hear so far so good!!! That's great to hear! Hope you just keep in getting better and better!!!

Hugs!

[patricia1]

I hope your recovery is still going well.

I will have to say I am a bit surprised that Medicaid would pay for an expensive surgery but not Elmiron. I dont understand that at all.

I have had my Interstim since 2001 and just had revision done this past May. My experience with it has not been a pleasant one and I wont go into details since you are having success. That is what is important and that you have continued success. Just be aware that even though you have the Interstim you might have to continue with your medicine treatment plan. The interstim will not cure your bladder. If there is anyway you can still get the Elmiron I would try that.

Prayers coming your way and :grouphug:

[lexur]

yeah...I think it just sunk in that, "Yah, I can pee without, that damn, piece of plastic!" :woohoo: But I didn't worry about how my current meds still aren't helping my bladder aches nor the disease that I have...so now i'm trying to go through the acceptance level and prepare myself for treatment ops for tomorrow's dr. appt....but yah, i've thought of it, not more than a split second b4 I read your post...but at least I did think of it... :bonk:

[lexur]

well...I had my post-op visit Dec 9th; and apparently he thinks the interstim should be doing more for me. I don't have to catheterize, but he thought it would have gotten rid of my pain as well, and it didn't do that. So, he's put me on morphine! :dizzy: (He actually prescribed oxycontin, <which has caused major probs in my family...addiction...that type of thing> but insurance wouldn't pay so now morphine.
At first I wasn't too upset my first day, was great I could pick up my 3 yr old without wincing for the first time in a year, and I didn't have to take breaks to lay down(sitting up too long hurts). But after talking to all the ppl that care about me, everyone has said something about me getting addicted and how they "don't want me on all this medication, it worries them...they're concerned" and now I'm torn. :loco:
I don't want to be an addict I just want to be able to take a 20 minute shower, and play with my daughter, I mean I'm only 23.
And the doc said that if this didn't work that he wants me to see a pain specialist... :help: ...so should i tell him how concerned i am about the meds? see a pain specialist? or do I need to accept my pain and that I'll be on this type of meds from now on?

I'm so ????? :hmm:

[tigger_gal]

I am glad the stim is working well for you.. your doctor should know that the stim will not help you with pain, it is not for pain..
Dose darvocet or vicoden help your pain.. at least bring it down to a level you can handle? I hope that you find pain relief soon.

[patricia1]

I agree with Tigger on this. The Interstim is not intended to help with pain. Mine has never helped with my pain. I still take daily meds for this. Also I am thinking you got this done in Nov right? You could still be having some surgical post op pains. When I had my revision done in May I hurt for a good month with that one. I hope you start feeling better soon.

[Dusty]

There was a presentation put before Congress on opiate pain meds and the issue
of addiction and so forth. Anyway they were approved to treat IC and other patients with severe pain. The research proved that people that are in intense pain and take pain medicine for it...the body knows the difference than that of an addict. An addict
is looking for that high and the body knows the difference. It can tell when your in intense pain and thus the pain killers do what they are suppose to do. I was always hesitant to take pain meds on a long term basis. I have to now. I even now am hesitant and have to keep reminding myself it is alright. I take morphine daily for a spinal cord injury, my legs and so forth. I didn't want to as I was afraid of it. I decided to give it a try and see how it went. It does just that for me. It lowers my pain within a tolerable range most of the time. I can now do some things I couldn't do at all due to pain. I think it is a blessing for those of us that really needs it and it obviously is a proven fact that the body knows the difference. I also use percocets for breakthrough pain. I am allergic to Vicodin and can't take Darvocets. I don't feel over drugged ever..I just have pain relief. I have had interstim and it is not for pain. I know some are lucky and will get that extra added benefit from it. I also know many go to pain clinics and get alot of help there. Don't give up. I know there is something that you can use that will help give you a better quality of life. It is just finding the right med. And you will.
Hang in there.
Dusty

[lexur]

I finally saw the Pain Specialist...she basically told me it was in my head and that I needed a social worker! I asked her...what is a social worker going to do for my pain?...ughhhh...she also told me that she wasn't going to write me a script for ms contin...I really just wanted to throw my entire bottle at her and tell her to take a flying leap...she was nothing but rude, treated me like i was an addict and crazy; looking for a high, when I told her/resident/nurse that i didn't want to be on the pain meds that is why i was there, looking for another option...she gave me none...

I can not wait to see my urologist...I don't what he will say...

but i am doing better...well trying to get my ducks back in their row...but I'm not the only one I know...and it won't be the last time for me...

all will be well, just waiting for my next oppurtunity

[icnmgrjill]

Wow! I'm speechless as to your latest appointment. If IC were all in your head, then why would your doctor perform an extremely expensive surgery to try to get rid of it??

Important to remember that there are usually two different types of pain clinics: (1) those that are designed to get you off of medications and (2) those that will offer a well rounded, multi modal approach to pain care including meds and other options, such as complementary therapies, etc.

Important to note, as well, that ANY good pain program will focus extensively on your ability to relax your body and your muscles... because the more tense you are, the more sensitive and painful the muscles can be. Part of that can be extensive relaxation classes, audiotapes, massage, etc. But another big part of it is anxiety management... and since most IC patients struggle with anxiety... it makes sense and its important not to be offended if anyone suggests that to you. I took an awesome anxiety class that totally changed my life for the better...

The fact that Interstim is helping you not self cath is wonderful and good progress but since this has never been approved for pain management I'm not surprised you didn't have any success with that. I would get yourself involved in some of the pain associations as they often had doctor referral lists for clinics. The American Chronic Pain Association and the American Pain Society can be good places to start.

Last but not least, I've had this conversation with several interstim patients. They still didn't understand that diet was badly irritating their bladders and causing most of the pain they were dealing with. So, I hope you're not cheating on that diet at all... absolutely no coffees, teas, sodas, etc. Nine times out of ten, when someone calls our office crying in pain it relates directly back to diet. They can be pretty evasive when we first talk saying they follow diet but then, as happened just yesterday, one lady admitted that she had started drinking orange juice and tea again. After I chewed her out abit (in a very nice way) she said that she just needed to have someone say that to her yet again!

Just a thought!

Jill ;)