My decision for removal

[patricia1]

http://www.ic-network.com/images/courageaward.jpg

Patricia absolutely deserves an award for sharing her experience. It was difficult to decide which award; I opted for the Courage Award because she has shown a remarkable courage throughout her ordeal.
Donna

My decision and choice for removal did not come easy to me. When I got my first one in September 2001 it was with such hope, joy and prayers that finally I have found something that will help me with my symptoms. And for 6months I got such great relief. For the first time in years I did not have that "gotta go" feeling and maybe just maybe I would finally find the thing to help me. Since most meds and treatments did not work for me, this was my last resort. Then the unthinkable happened and my leads moved. Looking back now I fully believe that these 2 car wrecks ruined my chances of the InterStim to help me. After this I started having problems with mine. Nerve problems, shocking problems and so forth. Then I was stuck with a Doctor who did not want to help me because I lost my health insurance. What was I to do. Here I was with a object implanted in me that would shock my leg so bad I could not move it and the Doctor and Nurses telling "Oh Patricia, this is normal" WHAT!!! So 8 months later my new Uro came into my life. After trying endless reprogrammings with no avail I dec. to go with InterStim unit #2. Even though my Hubby did not want me to, I wanted it. I wanted it to help me again. Help control my symptoms and not let me be a slave to my disease. So in May 2005 we removed InterStim #1 that was implanted in my waist and put the new one in the butt. Now during this time I have been losing weight and InterStim #1 choose to stick out of the waist area and was very uncomfortable. This is another problem with those of use with older units. This revision surgery was truly horrible. I hurt really really bad. Worse than the first go around and I was totally not prepared for this. Then on top of it I got a deep tissue infection the 2nd go around. So after all of this we (doctor and I) waited. Waited to see if I would have good results this time. Well unfort. no. I had 4 leads with the 2nd one and 2 out of 4 did not work right. Still had nerve problems even though it was a new unit. And went in for reporamming and so forth and it did not work. I then took what I called my InterStim break. My dad got really sick and stuff and I just did not have time to worry about the InterStim and what is was or was not doing for me. Plus again with weight loss it was sticking out of my butt again...UGGG

So with great thought consideration and concerned I choose just to have it removed for right now. I know that the new units are so much smaller than even the 2nd one I had, I just cant deal with the InterStim right now. It can be upsetting. On one hand there are those that have had great and wonderful results and for them I am so happy and would not have it any other way. And then there are those of us, like me, that have had problems. One after the other and for some of these people they have life long problems with damage from the InterStim. And I know the only way to find something to help with the IC battle is to forge ahead with different treatment option. But this one can have serious problems in the long run. I can choose should I decide to get another later on. Say if they start having more success with the InterStim.

This surgery was not easy either. I am just today MOnday (surgery was thursday) able to get around alittle better. I have my 2 incision and the both hurt. Although where the leads were hurt a little worse than the larger incision. Thankfully I was sent home with pain meds and my doctor did call in something stronger.

FOr me in my fight with IC I do have my battle scars. In fact I have 4. One on the waist and 3 on my bum area. To remind me what I went through in my quest to find something to help with my symptoms. They remind me of just how much I will be willing to try in order to get some sort of normallcy back to my life. And they remind me I am not a let down to the disease of IC. Hopefully my case will better improve the quality of surgeries done with the InterStim. And they remind me that I have battle wounds, wounds to show I tried, but I did not fail....

Also remember those that are trying to choose what to do, you are not alone. You do not walk this by yourself. We are there for you and what ever you choose or decide we will be there for you..

Thanks all for you help, prayers and words during my time. They were of great help

[ICNDonna]

I'm so glad your surgery is done and you are back home and healing.

Warm hugs,
Donna

[SharonA]

(((((hugs)))))

[vm]

Thank you so much for putting your story into words, Patricia, and sharing it with us.

[DebbieB]

Hi Patricia :

I am glad that it is all over for you and that you are feeling a bit better, take it easy and I do hope in all of my heart that you can find that right meds or treatment to help you with your IC..

I am thinking of you Patricia !!
I hope you have a very speedy recovery Patricia !!

Warm hugs, Debbie

[tigger_gal]

Hi Girl, good to see you posting.. I hope you heal fast and the pain stops.
I have an appt tomorrow at 4:45 to see what my options are.

[Trishann]

Battle scars, a true fighter. I am glad you are home too. I hope you do find other treatments that will help you. It is good to hear from you.

Sending hugs, Trishann

[patricia1]

Thanks all...

Tig I was just wondering when I signed on how yours was doing...Hopefully you will find out something soon. : o )

[tigger_gal]

Thanks Patricia, I have discovered that I cannot function with out it. After 4 years of success, all to be haulted, because of my own stupidity. I knew to guard my butt better then Fort Knox

[mary124]

Thanks for sharing. Hope you are on the road to recovery.

[ihurttoo]

Thank you for sharing your story. You are a very brave and courageous woman. I hope that you feel better and stronger with each day that passes.

Hugs,
Amy

[piper_chayse]

Thanks

Dear Patricia,
I just wanted to thank you for your post. I too have been through a lot of ups and downs during my journey with Interstim. I finally changed doctors, which has been a gift from God! But you posting this helps me know that I am not the only one going through this type of thing. Someone else put a lot of faith and hope into Interstim, just to realize that it comes with a lot of pain and hard decisions as well. I hope you find relief soon. I'll be praying for your recovery.
God's Love,
Piper

[patricia1]

(((((THANKS))))) Mary, Tig and Amy...anytime I have needed to rant and rave or just say something you have always responded.

Piper I know how alone and upsetting it can be. This is why I tried to write in words why I did it. I am not to good at writing stuff down. Because I know there are others out there that have had problems and I want them to know they are not alone....And if you ever need anything just let me know.

[deborah bush]

Hi! Patricial 1 I am so happy you got your interstim out, because why have it in there if it not working. I hope you are feeling better. I had my interstim taken out in 2003 in Miami, fl. The docter that put it in would not deal with me. Finally when I went to see him, he agreed to do another revision. I would have to agree on different things so I decided not to go back to him. So when mother and I went to Flordia for the winter I went to see my doctor in Miami. He agreeded to take my interstim out and he told me that he was going to start a 3 year trail study. So I decied to do to do the Botox study and it work for me. I was going to the bathroom 60 times down to 5 to 7 times a day. So I am so happy that my interstim is out and I get burning pain on my inscinon sites where the interstim was. So I will be praying for you Patrical 1 that you feel better.

[gardenofeva]

False Hope

I had my interstim taken out two weeks ago and understand your pain. I was sent to one of the BEST doctors who convinced me the interstim would take away my pain! I was sure I would be finally be cured from my horrible life of pain from IC. After one and a half years of reprogramming and reading that is was not for pain I turned it off and scheduled to have it removed. It is now gone from my butt and I also will have scars from a prodecure that wasn't neccesary from the beginning. I am also so thankful to be out of this doctors hands. He was the most uncaring, rude and hateful doctor I have ever seen.
And his nurse must have taken lessons from him as she wasn't any better.
I'm back with my old doctor now whom is the most wonderful caring IC doctor I've seen. And his staff is the best. One phone call and they put me above the rest and see me asap. What a difference doctors can make! I still have the pain that has caused the last five years of my life to be lost. I still pray and pray and pray that someday someone will find a treatment or better a CURE that will change life for all of us.
Just Eva