Major Update!

So it's almost been 2 months since I updated. A LONG 2 months at that. I saw Dr. Woo again, and he did an x-ray and my leads were not where they were supposed to be. I met with the medtronic rep and he confirmed that my interstim was no where near working how it should be, and recommended that I have revision surgery.

Dr. Woo was the only doctor who would do this surgery for me, since it was done wrong, I have officially been labeled a "complex case." Dr. Woo has great reviews and really knows what he is doing.

Revision surgery was scheduled for November 17, 2010...They called me on October 27 and asked if I could come and do the surgery on November 3! That was a week away! I said sure, because I was in so much pain and needed the relief.

I was in the operating room for 2 HOURS! He was planning on keeping me overnight, since the ride home was so long, about three hours. But we decided that I was so loopy after surgery I would be in less pain to ride home that same night.

Since then, I have been really sore, my legs hurt and I can't sit on a wooden chair or anything hard.

I went back for my post-op yesterday, I told him about the pain I am experiencing in my legs and my butt..its a general pain, not pinpoint pain, he explained to me that my body is very sensitive and the simple procedure I had done, my body felt like it was open heart surgery or something major like that, and that my body has a very small threshold for pain.

He then diagnosed me with Fibromyalgia.

I am now taking Neurontin once a day for one week, and will build up to three times a day to see if that helps with my muscle pain.

My interstim got adjusted and I am feeling great, just tired from getting used to my new meds :)

Seriously?!

I'm not real sure where to start since my last post, my incision has healed up, it's an ugly scar, but at least it's closed. The doctor in Hammond, Louisiana won't see me, since he didn't do the surgery, I have since then called dozens of doctors who just aren't seeing new patients or won't see me since they didn't do my implant.

I found a doctor at Ochsner's in New Orleans, his name is Doctor Woo, I saw him on September 24 and he did some x rays, told me that out of my 4 leads, that ONE is in the right place but he wasn't getting a real good response when he adjusted it. New Orleans is so far to drive that it put me in a flare, well, since then, my interstim hasn't worked, I felt it the first day or so, but now all I fell when I turn it up is a pain in my foot and it curls up and I can't move it.

He doesn't want me to have to drive back to NOLA because of what it does to my bladder, and he really doesn't want to have to do surgery that far away from my home.

He referred me to a couple of Doctors in Hattiesburg, which is only about 30 minutes from my house, but none of them would see me, not sure why...

but now I'm just searching hard for a doctor to help me...

http://www.ochsner.org/find_a_doctor/doctor/howard_woo/

Doctor Woo is amazing, it's just so hard to get to him, especially when it's like once a week...if you are near him, he should be your doctor :)

At the moment I'm in retention and having to self cath, and by the looks of it, there is more blood in my bladder than there is urine.

I am also patiently awaiting a phone call from an office in Jackson, 2 hours away, they are doing and interstim surgery on Friday and said I may can get in and have a consultation with the Doctor and the Medtronic Rep about getting my leads moved, hopefully this will work out, its been a little rough lately with the pain and such.

oh by the way, the FDA does NOT approve of the INTERSTIM for INTERSTITIAL CYSTITIS! nor for overactive bladder, therefore they are not obligated to help you locate a doctor, at least thats what I got when I called, so if you do not have numerous doctors in your area that deal with the interstim and ARE willing to see you even if they DIDN'T do the surgery, I would think LONG AND HARD about getting it done, because $46,000 is a lot to spend on something that may mess up and no one to fix it.

This brings me to the month of October, Interstitial Cystitis Awareness Month, I have so much to say on that, but don't feel like sitting here typing it, I will try and keep updated on how this is going and not make my posts so few and far between.

If anyone has had their leads moved, I am curious as to the recovery time and restrictions for that surgery.

Happy IC Awareness month, tell someone about it! :)

Getting Worse by the day? :/

I said almost a month ago in my last post that it was all over besides recovery...well...i didn't know recovery was going to be HELL.

I went to the doctor for my one week post op after my stage two permanent placement.

Dr. Stripling lives in Florida, flies into Meridian on Monday and drives into Laurel on Tuesday, well my appointment was Tuesday morning, he had gotten stuck in traffic, since I had to be a work I said what the hey, I'll just let the other doctor look at my staples and see if they're ready to come out, since he is a urologist too and all....

well....

he said "yeah, lets take your staples out" it took him about THIRTY minutes to DIG them out, it hurt more than anything I've ever felt before. And you couldn't tell they were staples, they just looked like balls of flesh and blood.

I could tell something was wrong, the nurse put a piece of gauze over it because it was bleeding and told me just to hold the gauze on until it stopped bleeding, but to leave it open....the picture below is what i saw when I looked at it...

After I saw it I went and asked someone if they thought it looked like it should...my face was pale and I was really woozy, at this point I felt really sick and it would not stop bleeding.

My mom came and got me and took me back to the doctors office, they say "oh, we should pack this... and by the way, it's not going to heal like it should because it busted open and we can't stitch it since it heals from the inside out."

It HAS to heal right because every 4-6 years they have to replace it because the battery only lasts that long...well...I will say I was pissed...and that's as nice as I can possibly put it...

It hurt all day after that and I was very upset and trying to get ahold of my Doctor because I KNEW this wasn't right.

At 4:00 that afternoon, he called me and told me to come up there immediately that I HAD to be stitched up.

I got there and he was waiting for me with a big pain medicine shot and numbing medicine along with stitching tools...Thank God.

After that horrendous incident, I started recovering, my doctor is a traveling doctor, so he left about two weeks ago. I miss him so much! My interstim is turned off at the moment, the Medtronic rep is supposed to come adjust my settings tomorrow so that I can turn it back on.

I have called 9 doctors in Mississippi and none of them will see me since they aren't the ones that did the surgery. I have one doctor supposed to call me back this week and if he won't see me I will be driving to Hammond, Louisiana or somewhere in Arkansas just to have these 5 minute adjustments done. Ridiculous, I know, but I may not have a choice.

I just pray that in the end this will be worth it, I know if I had a doctor it would be...for now I still have probably another month with stitches...and who knows how long before this thing gets straightened out and working again...

Satuday - Wednesday's update. and Stage 2

Sorry it's taken so long to update, but here it is! It's all over besides recovery!

Today is Thursday, and I got ZERO sleep last night, I have more pain in my one incision than I had the whole trial process. It's like a billion knives, but it makes sense since it is the second time the pocket has been cut open in a week, and the second time for it to have staples in it. ouch. I am taking it easy today, staying mostly on the ice pack, it seems to help a little, but I can tell when it's time to take some more pain medicine without looking at the clock. Bladder pain though, is a thing of the past. My settings on my interstim are set and I have no symptoms, if I can just get this incision healed I will be a new person. :) oh, and by the way, I haven't taken a bath or shower since last Wednesday. attractive, huh? I have only been able to sponge bath, I'm waiting on the nurse to call me back and tell me WHEN i can possibly bathe again, because this is not cutting it. In the pictures above is my only battle wounds left, the bandage is where the interstim went in. and then you can see my remote. I hold the black part to the incision and synchronize the remote to it and that's how I change my stimulations.

Wednesday came, I was supposed to be at the hospital at 11:30, well, when we got there, they said, oh yall can go home, the medtronic rep won't be here until about 2:30. We weren't going home, I had not eaten anything all day and I knew if I came home I would blow it. So they got us a holding room so we could wait, well, at 2:30, they tell us, that it will be more like 4:00. As 4:00 rolled around, no sign, they then come tell us it will be closer to 5. The medtronic rep FINALLY got there, then we had to wait on Dr. Stripling to get there. In the mean time, I had a staple to pop out, because my swelling had went down and I had been coughing and sneezing and must have pushed it out. I was in a great deal of pain and the holding room beds are not comfortable, so they gave me some morphine to ease the pain. I finally went back to surgery, they reopened my biggest incision, and put the interstim in it, the stapled it back together. I was in some pain when I got home. And yeah, that's my butt in that one picture, but I wanted to show my staples and the bright red blood is where the staples started backing out.

Tuesday I was feeling the stimulations in my tailbone, which was almost as bad as my leg, so I called and Ken changed my electrode settings again, and that setting, was PERFECT! I had to go pre register for my Stage 2 surgery and I had my post op appointment with Dr. Stripling, everything was looking good and we were all getting excited about my symptoms disappearing and doing the permanent surgery on Wednesday!

So on Monday, I couldn't even lift my leg to get in my vehicle, I couldn't bend any and I was in so much pain I was ready to rip that little stimulator out! I called a friend of mine, Renee that has the interstim and told her how bad my leg was hurting, she told me the same thing happened to her and they had to change her electrodes, because you are supposed to feel the stimulations in your booty, female areas, and mine was just going straight down my leg. So I called Ken, my medtronic rep, and we changed my electrode settings.

Sunday was bad, I believe that I over did it and I was having a real hard time getting around. I rested all day after eating Mother's day lunch.

Saturday I was in so much pain in my leg down to my toes. It was my electrode settings and i didn't know, so I just dealt with it. My sweet boyfriend did take me to Wal Mart so I could have an outing, I got to ride in the sit and shop, everyone looked at me as if I had no business in the sit and shop, I just smiled a little smile that let them know I WOULD run them over if they didn't mind their own business.

Interstim Stage one, day three.

holy. cow. today. was. horrible. So, my doctor told me and my mom the day of surgery that I could go back to work the next day, well, I wasn't going to over do it, but last night, I went to eat and to wal mart to "walk a little soreness out." well. this morning, I thought I was going to die. No bladder pain, but I couldn't even get myself off of the couch, my incision pain was unbearable. We have a new urologist in our small town, he's who did my surgery, none of the nurses know anything about it because none of the doctors Laurel has ever had has known how to do the interstim. So, they haven't been able to answer too many of my questions. I called the doctor first thing this morning, told him I had gotten out for a little while yesterday and he got onto me and told me to stay in bed, and called me in some pain medicine that works wonderfully. Hallelujah! I cannot get myself off of the couch if I'm laying down, but if I'm sitting I can get up. sooo, my wonderful mother built me a "nest" to support me and help get my comfy. It's been great since she's gotten home from work to help me, I can't bend to get anything out of the refrigerator or feed my poor sweet dog, and if I drop something, it just stays there. But as I was saying, I don't even feel like I have a bladder, I don't even realize it's there. I have only peed like 4 times today, with no pain whatsoever, it's the strangest feeling, to have no feeling when I pee! Oh, I do have a solution to the getting myself up off the couch problem, I put my feet on the ground, and call someone in here, they grab my hands and yank me up, that way, I don't use any of my muscles, so it's pain free. lol. I've noticed a little bit of bruising by my lowest incision, but nothing major, I'm not bleeding or anything, so the worst part is just incision pain. I hope this blog makes sense, I'm hoping to post pictures of my incisions tomorrow, I don't think they look much different other than slight bruising. My pain medicine is definitely kicking in, so I should probably go lay down...if I can figure out how too, it's h-e-l-l trying to get comfortable enough to sleep, luckily the pain meds knock me out.

goodnight, maybe my post tomorrow will make more sense.

You can see my "nest" in the picture, I find that if I put an extra pillow on the side of my incisions, that I'm a lot more comfortable and supported. And there's a little ottoman that I am able to prop my feet on. You can also see my sweet puppy at the bottom of the picture who hasn't left my side since Wednesday!

Interstim Stage one, day two.

It has been so hard getting up and down today. I got stuck and couldn't get off of the couch! It was a really rough day, still no bladder pain at all, just sore from the incisions. I can't bend or anything so it's been really hard getting in and out of the car and getting on and off the toilet. We went to Wal Mart to get a shower head that could come off of the hook so that I could kind of bathe, being as I can't take a shower or a bath. I scheduled my PERMANENT interstim stage 2 for next Wednesday! I'm not sure what time it will be, but I will be updating every day. Walking isn't very painful at all, except when I'm trying to keep up with Abbey and my mom in wal mart! I'm off to try and rest, I'm going to try my best to get out and about for a little while tomorrow.

Interstim Stage one, Day one. wow.

Here's how day one turned out!.........
My techy controls, I shouldn't really have to change these the one knob with the A is what I control my pulses with.

Below is my three incisions, the one closest to my booty is where he put the lead I believe, the long one is where the pocket for the permanent stimulator will be and the one at the top is where my wire is coming out. The next picture is just me before surgery waiting and scared.

So after midnight last night I couldn't eat, I had to be at the hospital at noon for my interstim stage one. well,we waited...and waited....and waited.... I had not eaten since 7pm last night, well, at FIVE O'CLOCK they took me back to surgery. I have a medtronic rep, hes super nice, his name is Ken, and my god, he looks just like Ken from Barbie and Ken. and muscles...whew. But he is pretty, and nice..and says gemerly instead of generally, but that's ok, because he's nice and knows what hes doing. I came out of surgery in a lot of pain where my incisions are but NO pain whatsoever in my bladder! FOR THE FIRST TIME SINCE 2007 I HAVE NO PAIN IN MY BLADDER. GOD DOES WORK MIRACLES! I have the nicest doctor and was very well taken care of.

It's hard to get around right now since I have a cord hanging out of my back. I can't take a shower or bath until at least Tuesday, but I can take a sponge bath and my best friend/cosmetologist is going to wash my hair at the salon. I MAY get the permanent stage two on Tuesday if things continue to go well. I can't bend or turn a lot, I find I'm more comfortable on the couch, because I can't roll over on my incisions and such.

Sorry this is such a short update, but I think I should rest since I was at the hospital for 8 hours.

:)

Let's start from the beginning.

Late one night in 2007, my senior year in high school, I thought I was having an appendicitis attack. We rushed to the Emergency Room thinking I was dying. They did test after test and sent me home telling me nothing was wrong. The next few days I was still hurting in my lower right side, I went to my family doctor and he decided to admit me into the hospital to figure things out. I stayed in the hospital for over a week, possibly longer, I saw every gynecologist, gastroenterologist and every other doctor that was there. No one could find anything wrong with me, but we all knew something was very wrong. I was discharged with no answers and sent home to deal with it on my own.

I saw doctor after doctor over the next 14 months, some doctors thought it was my female organs causing me problems since I have a history of ovarian cysts, they wanted to stop me from having my period all together and send me through early menopause with injections, I was NOT willing to do this at 17 years old.

Then other doctors wanted to take my ovaries out, I knew it wasn't my female parts so I wouldn't let them touch me.

I finally found a doctor that said, "hey, let's look in your bladder, I think you may have interstitial cystitis" and sure enough, in February 2008, I was diagnosed with interstitial cystitis.

Since then, I have had elmiron instills, DMSO instills, silver nitrate instills, been on 23 different medications, went into retention for 9 days, and had 11 hydrodestentions/cystoscopies.

Ten of the doctors I saw gave up me and stopped fighting, I had never felt so alone and scared. I found a new doctor here in my small town who know's all about IC. He is the third doctor to recommend interstim and the ONLY one to offer to do it for me.

I was scheduled for a hydrodestention this past Wednesday, and I found out they didn't plan on putting me under anesthesia, so I called and told them I had to be put under in order for them to do it. So we rescheduled for tomorrow.

I had to go "pre-register" today, which I've never had to do before. As we were going through paperwork, the nurse said, we have you down for a hydrodestention and your FIRST STAGE INTERSTIM IMPLANT SURGERY! I said no, no, no, somethings wrong, we were scheduling that AFTER he looks in my bladder, but sure enough, the orders were there for my first stage interstim implant to happen tomorrow at noon. I cried and threw a mini fit in front of the nurses, I'm not prepared, I'm twenty years old and I don't want a permanent nerve stimulator in my body! I'm going to set off metal detectors everywhere I go and have to explain to people why I have a "remote control" I guess it's something that you can't really prepare for. I am relieved that I only have one day to stress over it instead of knowing weeks ahead of time. If it helps though, everything will be worth it.

Now I am off to find a medical alert bracelet, and fix it up so it won't look like something a 90 year old lady would wear, and prepare for the days to come.

I wanted to post my story on here and keep a daily journal of my journey with this because I know how helpful it is for others out there considering the interstim or anyone who needs my support while dealing with their IC, I am not a medical professional and what I post is all opinion or what my doctors have suggested that I do as their patient.