Considering Botox, looking for some newer info

[Pamela_Joy]

Since the last post for Botox was over a year ago I thought i'd start a new thread. I'm at the end of the treatment pipeline. I've done or taken just about everything. I have severe End Stage IC. It is one of the worst cases my doc has seen (he specializes in female pelvic disorders) I just tried Interstim back in November...it was a complete failure, I actually feel worse. Now he wants to try Botox. I have some concerns. For one thing he finally admitted after the Interstim failed that with the severity of my IC just about anything is a "crapshoot at best". Before the surgery he had told my father there was a"good chance" it would work. Since I did not wish to spend my days alone with the device in me while my husband was at work I stayed with my parents during that time. Each day as it became more obvious it was not working, my father became more and more devastated. I thought he was going to throttle my Dr. When he finally fessed up to the truth. I knew from my research the odds were not in my favor, but wanted to try anyway. But now even having known that my depression has worsened. I'm not sure I'm psychologically ready for another procedure so soon and another failure. I've already cancelled 2 appointments because I know he is going to push hard for Botox right away. I've read about the retention problems and the need to self cath as a probability. I'm unable to do that, even nurses have a hard time putting one in me. I was told years ago it was unlikely I'd be able to...something about how I'm shaped. The stories of pain increasing also worry me...I take over 1000 mg of morphine a day & frequently use fentanyl sticks...and I still experience a great deal of pain. It never stops I have 3 levels; bad, horrible & excruciating...the first 2 happen every day, the 3rd 4-5 days a week. So any advice, experiences with Botox, any info? BTW my dr hates that I do research on my condition. I think he wants to be the fountain of all knowledge. He may be the" pro from Dover" but his bedside manner needs some work. I know that people often think that if you don't try everything suggested it means you don't want to get better, but it's been my experience that each failure means getting worse and I'm at the end of my rope physically & mentally. I haven't given up, but I've become much more wary. I would give anything to get better, get my life back and return to teaching, but now I have to weigh all the consequences. Any responses would be welcome and thanks for "listening"
Pamela Joy

[Linda May]

i knew a ladie that had to have botox every 6 months it took a few days after the precedure, but she says she was 99% better after treatments. she said other methods would not work for her but the botox was her miracle solution. so maybe it will be yours also, i hope and pray that it will be. keep us posted we all understand what you are going through and may God bless you with this botox treatment.

[tara73]

Hi I was looking into Botox but my insurance denied it. I also have a severe case and am at the point where my doctor has nothing els to try and hes a specialists. I went for a second opinion but the guy I saw then, I knew more about IC than him. My doctor had said Botox works about 70 % of the time but there is a great chance of retention and having to self-cath. Have you ever tried cathing with a pediatric cathetar or silicone cath? I have heard others having more success with these. You might wanna try these before going thru with the Botox because you likely will have to self-cath after. Good luck!!!

[faithtou]

Botox

After 25 years, I also had to leave my teaching career due to effects of IC. A few years ago, in a desperate effort to quickly correct my issues and continue teaching, I scheduled to have Botox injections at a major clinic. Fortunately, I found out the evening before that my insurance would not pay for the procedure as it was not FDA approved in the US. Although disappointed, it was probably for the best as I really had not researched other alternatives or the possible issues the botox "might" create. At that time the doctor stated that the cost of the botox procedure would be several thousand dollars every six months. Even if we absorbed the cost of the procedures personally, the insurance company declared that they would not cover any additional risks that any surgerical procedure might cause. These are just a few issues you might want to check out with your insurance company before you proceed.

[playethic]

New study

Anyone know if 'onabotulinum toxin A' is botox?

There's a urology conference in about a week, and a study that's going to be launched/presented is on the persistence of therapeutic effect after repeated intra-trigonal (?) injections of onabotulinum toxin A in patients with IC.

[Pamela_Joy]

Thank you Linda, tara, faith & playethic for replying to my post. All of you have given me things to consider. Any info or advice anyone has I'd love to hear it.

playethic...I saw your post while I was writing this reply. I do believe they are the same or at least very similar as that is the area of the bladder they usually inject the Botox into. It should be interesting to see that study. One problem I have noticed in researching other treatments, at least for myself, is that often trials are not done on the most severe IC patients. Of course they want the study to go as well as possible so usually only the best canidates are selected. Also since the number of women with IC is so small, the number with severe End Stage IC is even smaller. And like I got my Dr to admit ANY procedure is a crapshoot (his words) for patients like me. It doesn't help that IC is different for each woman and even more different when it is at it's most severe. playethic, if you find any links to that study could you post them here? I'd really appreciate it. It doesn't matter how technical they are, over the years I've managed to "translate" most studies related to IC.

I definately plan on researching this thoroughly...much more thoroughly than my uro would like I'm sure. I did the same with the Interstim. Even though I knew it did not have a very high chance of working for me, I decided to go ahead anyhow. However after sitting next to my father and hearing the half-truths and omissions that came out of my Dr's mouth I'm going to take anything he says as just that, half-truths and not saying important facts. My father however put all his faith in what he said and as I stated above was devastated when it did not help at all.

The cathing issue greatly concerns me. I plan to look into what tara suggested. Also I will not have the procedure done unless we have a plan for cathing in place BEFORE the procedure, not just hope it isn't necessary and deal with it if it becomes an issue.

Fortunately the surgery scheduler is great about getting insurance approval well before the surgery so I will know if that is an issue. There is no way I can afford to pay for it myself. I'm on disability and my husband is also a teacher...in other words no money.

Even if I decide to have it done, I'm going to wait a while. Like I said I went into the Interstim knowing the chance it would work was low, but I wanted to try anyway. I thought since I knew this I wouldn't be badly affected mentally...boy was I wrong. I ended up staying at my parents several weeks longer than I had planned because I became so depressed after the operations failed. I've had over 10 years of trying virtually every pill, instillation and procedure available and have become mentally weary. I did have a period of remission early on when 1 hydrodistension and 6 weeks of DMSO over a summer which cleared the IC up and I went back to teaching in the fall without missing any teaching time (just a yucky summer) for 3 years all I did was take Elmiron and I went to the bathroom slightly more than "normal" but it did not interfere with my teaching or life in any way. Three years later and I came out of remission BANG, the IC had returned with a vengeance. It seems to get worse month by month. I look back on what I thought was level 8 pain a few years ago and think that was nothing, I'd call it a 3 now (btw I HATE those pain scales...my normal everyday constant pain would have most people writhing on the floor screaming for an ambulance.) When Dr's ask me to "rate my pain" I usually say "I'm at a 7 for me which translates to about a 20 on a normal oh goodness my arm is broken pain scale. I hate hearing "there is nothing beyond a 10" My pain can in no way be compared with an average persons 1-10 scale. Anyway like I said I can hardly deal with each day as it comes. Right now the thought of preparing for another procedure seems beyond me.

So I will spend my time doing research and trying to regain some equilibrium in my life. Reading this forum has given me far more info than my current uro ever has. When he can answer all my questions (when I already know the answers) and can prove he can look beyond the procedure and plan for what could happen afterwards AND I'm at least somewhat ready for yet another disappointment I might have the botox injections.

Perhaps faith it might be my miracle. I sincerely hope so, but if this disease has taught me anything it is hope for the best, but prepare for the worst.

Does anyone know how the botox deals with the pain? Especially the pain other than in the bladder? Pain is my biggest concern, not frequency. Yes I go over 50 times a day, but I can deal with that. It's the pain that keeps me from doing much of anything and leaving the house just as much as the frequency. I can deal with frequency, that is a constant. It's the pain that is always changing and increasing. For frequency all I need is a well stocked bathroom. LOL try explaining to your cleaning lady, in broken Spanish, why you have a small bookcase, portable DVD player and a laptop in front of your toilet! But I guess for a high powered DR. frequency is a horrible thought. He seems to be fixated on it and has even said if we can get the frequency down I can live a normal life....ummm not until the pain also goes away too!

I've pretty much given up the hope I will ever teach again. I taught for 12 years. In May I will have been on disability for 6 years. I don't even have a teaching licence anymore. There was no way I could get the 180 hours of continuing education I'd need to renew it. I'm 43 years old. I have half a 2 car garage of personal teaching stuff that I don't even have the energy to sell. I loved teaching, it was my passion. I still read my husbands teaching magazines and often have the thought "ooo that TV show/book/idea would work great when I'm teaching X"

Don't think I've totally given up and I wallow in pain all day. After I went on disability I became interested in Japanese anime & manga so I decided to teach myself Japanese (I learned Korean in the Army so I'm familiar with learning Asian languages, plus 1 of my degrees is in linguistics. I've taken almost a dozen languages...some I can only speak a few words of, others I can only read and some I'm still fluent in) Studying also helps to keep my brain from turning to mush. I read a lot like I always have. I have a great computer & every video game console except the Wii (since movement=pain I figured it would be useless to have one) and spend a lot of time online, sometimes in virtual realities like Second Life. I have friends all over the world. I make it a point not to turn on my TV until the evening unless I'm having a REALLY, REALLY bad day. My Mom calls my "nest" a teenage boys dream LOL, but it does help to have a variety of things to do with all the time I have.

On the subject of technology I highly recommend getting a tablet. I have an iPad. They are great for people with IC. When I'm stuck in the bathroom I can watch movies, read books, surf the net and play games. It's also terriffic for language study, I must have 30 Japanese language learning apps. I'm now looking at some of the new tablets, the iPad is wonderful, but I'd still like to have a USB port, Flash capability and a webcam. I no longer dread football season, I can spend time with my husband, but not have to watch the games.

All this technology is courtesy of a wonderful father who hates to see his baby girl (I'll probably still be that to him when I'm 60!) in so much pain and is constantly trying to find ways to distract me from my disease.

Sorry if I've ranted some, it's been an especially tough week. I developed a UTI and had to go in for that and a shot of Toradol to break the severe increase in pain.

Thank you,
Pamela Joy

[playethic]

2001 Botox / Bladder Study

Pamela -

That new one doesn't get presented til after March 17, I'll see if I can find it after that.

I came across this one today on MindCull ... from a couple of years ago I think.

Lisa

ONE SURGEON'S EXPERIENCE IN 50 PATIENTS WITH BOTULINUM TOXIN INJECTION INTO THE BLADDER AND URETHRA
Author(s): Michael B Chancellor*, Christopher Smith, Pittsburgh, PA.
Introduction and Objectives:
Studies from our laboratory indicate (Smith et al., J. Urol 165:277A, 2001) that botulinum toxin A has similar efficacy on bladder smooth muscle relaxation as it does on skeletal muscle. We have used botulinum toxin A (BTX) to treat a variety of lower urinary tract skeletal and smooth muscle dysfunctions. This review details one surgeon's experience using botulinum toxin A in the bladder and urethra in 50 patients for a variety of dysfunction over the past 3 years.

Methods:
Between October of 1998 and October 2001 fifty patients (age 31-82) were injected with BTX into the bladder (n=10) or urethra (n=40), (19 M, 31F). Voiding dysfunctions included: multiple sclerosis, spinal cord injury, stroke, overactive bladder, interstitial cystitis (IC). Under light sedation, patients were treated with either 100 units of BTX divided in equal doses into the four quadrants of the external sphincter or via injection into the bladder base using 100-300 units of BTX diluted in 4-30 ml of sterile saline. Currently, 15 patients have undergone further injections (up to 4) at intervals of 6 months or more.

Results:
Maximal efficacy of BTX injection occurs within seven days and may allay symptoms for at least 6 months. There have been no long-term complications such as stress incontinence or urinary retention. Of the patients receiving BTX into the bladder, patients had preoperative evidence of involuntary detrusor contractions during video urodynamic testing. Capacity ranged from 100-244 ml with a mean of 204 ml. Baseline testing indicated no vesicoureteral reflux in any patient. Analysis of the fifty patients indicates that 41 of 50 patients (82%) report a decrease or absence of incontinence. Diaries indicate a decrease in voiding symptoms both day and night. Subjective bladder symptom scores also improved. Follow-up of these patients indicate that effects can last at least 6 months.

Conclusions:
Botulinum toxin A injections are a safe and promising treatment modality for a variety of lower urinary tract dysfunctions. Urethral skeletal and smooth muscle dysfunction including DSD, BPH and bladder neck obstruction can be successfully managed. In our review, botulinum toxin A is equally effective in women as it is in men. When injected into the sphincter, there is little risk of stress incontinence. Bladder botulinum toxin injection is effective for not only neurogenic detrusor hyperrflexia but also overactive bladder. Botulinum toxin could even be considered for IC.

[Pamela_Joy]

thank you playethic! your an angel

From what I understand of that article it seems it might be helpful for frequency, but I saw no mention of pain. That is definately one question I'd like answered...is it possible for Botox to affect the pain of IC?

Of course even though I knew Interstim probably would not affect my pain even right before my surgery the Medtronics rep said "We'll have that pain & frequency reduced real soon." I looked at him and said, "Even your own [meaning Medtronics] website specifically states Interstim was not designed for pain nor does it usually happen." He got a sheepish look on his face, looked at the ground and mumbled, "yeah you're right" So once again the truth becomes a slippery thing difficult for us patients to grasp onto.

For myself afffecting frequency without reduction in pain probably would not make it worthwhile for me to go through with the Botox procedure. Like I've said the pain bothers me far more than the frequency...I long for the days when my biggest problem was frequency. And I thought I was bad off then. My frequency remains steady at 50-75 times a day while the pain increases little by little almost monthly. I sometimes wonder if a person can go insane from pain.

Thanks again playethic for posting that article. If it wasn't for my fellow ICers I'd never find all the answers I need to make an informed decision. Just surfing the web by oneself can sometimes be a hit or miss endevour.

Pamela Joy

[playethic]

I'm the same as you - there aren't so many of us I think? - the pain bothers me far more than the frequency. Really frequency/urgency aren't issues for me, except in relation to the pain (the bladder hurts more with fluid in it - so if I urgently need to pee, it's only because the pain is so intense).