Questions about botox

[jeanniebug]

Here I go again. I'm trying a new treatment. ;) I recently had some spinal injections that did not work. I am delving into some of the more experimental treatments at this point. I've been diagnosed for 2 years and tried many treatments, plus I'm on several meds. I'm thinking of trying Botox if my insurance will cover it. Here are my questions about it:

1) Is Botox ever used to try and help control pain (a MAJOR symptom of mine...)
2) Have any of you had pain relief from Botox?
3) Does anyone know if there are any serious side effects possible from Botox injections into the bladder?
4 ) Is Botox given as an injection or as an instillation? If it's an injection..how do they get a needle into your bladder?
5) Is there a catheter involved during the Botox procedure?

My urologist is going to have to refer me over an hour away if I am approved for this. So, he could not answer alot of my questions for me about the Botox since he doesn't do it. Any input you all could offer would be great. Thanks!!! :)

[Hel]

Here I go again. I'm trying a new treatment. ;) I recently had some spinal injections that did not work. I am delving into some of the more experimental treatments at this point. I've been diagnosed for 2 years and tried many treatments, plus I'm on several meds. I'm thinking of trying Botox if my insurance will cover it. Here are my questions about it:

1) Is Botox ever used to try and help control pain (a MAJOR symptom of mine...)
2) Have any of you had pain relief from Botox?
3) Does anyone know if there are any serious side effects possible from Botox injections into the bladder?
4 ) Is Botox given as an injection or as an instillation? If it's an injection..how do they get a needle into your bladder?
5) Is there a catheter involved during the Botox procedure?

My urologist is going to have to refer me over an hour away if I am approved for this. So, he could not answer alot of my questions for me about the Botox since he doesn't do it. Any input you all could offer would be great. Thanks!!! :)

Hi Jeannie,

Hope you are having a reasonable day today. In answer to your questions

1/2. I was told that Botox is used to provide relief from frequency. If it helped the pain then that would be a good spin off. In my case, it made my pain worse and caused terrible bladder and urethral spasms.
3. Yes, retention is a serious risk. From speaking to the ladies on here, it depends on how much dosage you are given and where it is injected. I had 300 into the bladder and went into full blown retention (never had a problem with retention before).
4.The botox was injected into my bladder using a cystoscope.
5.Not usually, unless you have a problem with retention afterwards. Depending on how bad it is, you may have to have an indwelling catheter and a leg bag or have to self catheterise. Again, some of the ladies who this has happened to, have had to wait 8 - 9 months for the retention to wear off.

I do hope that if you decide to have it done, that it is a success for you. I think you are right to gather as much information as possible to make an informed decision. Personally, I wouldn't have it done again, but for others it has helped. We are all different.

With best wishes from


Hel

[CinSin]

Hi Jeannie,

I had Botox injections for the sixth time on May 16th. I will try to answer your questions as to my experience with Botox.

Questions 1 & 2
The injections help me with pain.

Question 3
I was informed that there was no known long term effects from Botox. Only short term in the form of retention.

Question 4
My doctor does injections but did do some as instills as a experiment.

Question 5
I had all six procedures during an hydro.

The first time I had botox injections the doctor used 200 units in my bladder and I did have major retention but it did help with urgency and pain. The second through fifth procedure he used 100 units and I had minor retention. This last time he only used 75 units in my bladder and I haven't had any retention. Some people I know have only had their pelvic floor and urethra's injected and it really helped and they didn't have any retention. It has really helped me with the bladder but it has helped me much more with PFD and Vestibulitis.

The one thing I tell those who ask me about it is - Botox does not eliminate all my symptoms. It helps manage them. I still have flares only now my symptoms are much more manageable.

My advice, start with a small dose like 100 units in the bladder and another 100 units if your doctor will do the urethra and pelvic floor. You can always increase the dosage the next time.

[Nics]

I had botox done solely for pain. Was living on high doses of Morphine for the last year. Have had a great improvement in pain BUT I am permanently catherterised as I have gone into retention (I was having trouble with retention before the botox so it was proberly a no brainer that I would afterwards)

[MimiG]

Hello all,
Not sure I understand how to post.. here I go :)
I'm dx with cystitis. I have urge/frequency, no pain. I've been on about 5 meds..none have worked. I have had cystoscope, plus machine that measures capacity ( sorry forget the name) and a bladder biopsy.
My urge/frequency has gotten so bad interfering with a normal life that I'm now on Antidepressant too.
I'm ready to try just about anything but am so concerned over retention issue, if I decide to use botox injections. I read 300, 200 units etc.. what do these numbers translate into? What is a unit?
I do not have use of one hand so self catherizing would be impossible. Any idea what/who help? I can see the $ mounting if I need private nurse :(
I understand medicare does not accept/pay for this procedure. Approx. how much have others paid? My Uro has never used botox but wants to and I would be his first patient. Also, he tells me it's an office procedure.. no sedation just local anethetic (LIDOCAINE)I believe is what he said. He knows my concerns. I'm also concerned about pain , LOL Thanks everyone!
MimiG

[CinSin]

Hi Mimi,

Each bottle is 100 units - it isn't a very big bottle. I have never had botox without sedation. The doctor does it and a hydrodistention at the same time.

I had 200 units all in the bladder the first time and had a lot of trouble with retention for the first month. Then I had 100 units in the bladder and 100 in the urethra. Now I have 300 units, the last time (May 16) the doctor only injected 75 units in the bladder, the rest in the urethra and pelvic floor. I didn't have any retention at all.

By the way, I know a lady that got Medicare to pay for her procedure.

Cindy

[MimiG]

Thank you Cindy.. wonder why my Uro said no sedation needed other then local numbing? Now I'm feeling the OUCH , LOL. He didn't mention any area other then bladder muscle. I would love to know how Medicare paid for the procedure. Do you have any clue? BTW, I'm in south Tx :) I considered going to Uro at Houston Baylor, but don't want the travel and time involved. With my urge/frequency car trips are NOT enjoyable :(
MimiG

[CinSin]

Hi Mimi,

I live about 55 miles south of Houston. I see a uro at Baylor, I love him!!! I don't know if I would have traveled far to see him before but now I think I would travel across the country to see him. He has helped me so much!!!

I think the trigger point injections are just as beneficial as the bladder injections.

What part of Texas are you from?

Email me at ictexas@yahoo.com and we will chat more.

[Flore]

Hi Jeannine!

I answer you by points:

1 y 2.- In my case Botox helps with pain, my principal problem is my PFD and vulvodynia, so with Botox I can empty better my bladder, this means that my CI is better

3.- The only side effect I know is the retention. But I never have had. I don´t remember if I have had them, I don´t know if 6 or 8 times. Anyway, onpy in the first time and this time I had the injection in the bladder. This time my dr did a new teqhnic (??), this time he used 200 units (the other times he only used 100 units), and he injects 50 units in the trigone

This was 2 weeks ago, and I´m very well, without retention and without pain

4.- I only have had Botox by injections

5.- I use to have the injections at the same time of the hydro, so I use to have the catheter for 2 days

As Cindy, Botox is not my cure, but the flares and pain are more managables now

Bye!!

[MimiG]

Reporting an unusual, but welcome change.
My Neurologist put me on an antipressant on 6/23/05 and another braintumor patient told me about taking Aloe Vera concentrate to help with my disability from brain tumor. Started it 6/27/05
I have actually slept 5 to 7 hours at a stretch at night the last few days. It doesn't help that much during the day but I have had a few 2 or 3 hour stretches of no bathroom breaks. I have curtailed my water drinking. But I do drink 1/2 and 1/2 caffeine/decaff cup in the morning. Just can't give up my semi cup of coffee :)
What do you all make of this? Maybe just placebo effect, right? Whatever it is I'm grateful I haven't slept that many hours in many years!
mimiG

[MimiG]

CinSin, was telling hubby about the Baylor Doctor from an article I read. I believe your name was mentioned? Hub is thinking if we don't get help from local Uro we might as well drive to Houston. We shall see. LOL I hate car trips :( uggg

[MimiG]

Flore, what part of Mexico are you located? Our daughter lives in Guadalajara. It was a big adjustment learning the language and customs but they love it there. :)
MimiG

Happy July 4th everyone

[Nics]

HI All

1) Is Botox ever used to try and help control pain (a MAJOR symptom of mine...)

I was in so much pain before Botox that I was taking Morphine 2 hourly. The botox has fixed about 80% of my pain. I havent felt so good in a long time.

3) Does anyone know if there are any serious side effects possible from Botox injections into the bladder?

The only side effects I have had is retention for the first few weeks. Fixed by putting in a permanent cath for a month. No problems now. Also I have found that I was as stiff as a board. All of my old spinal injuries have been stirred up but that sorted itself out in about a month as well.

Also if anyone ever tells anybody that they need to have it without sedation RUN!!!!!! My urologist did it under general sedation with a hydrodistention and I still needed lots of pain relief after.

If Ive learnt anything over the last 5 years Ive learnt that you trust your instincts about your care and if they wont do what you want get a second opinion, third or fourth until you get what you want. Although I guess I can say this as our health care is free....you just have to wait a little while (sometimes 6 months to a year) to see someone.

[Flore]

Hi Mimi!!

I live in México City!

[CinSin]

Hi Mimi,

It was probably me in the article about Baylor. I just recently did two television interviews and they will sometimes use my name in printed articles.

I was invited to a speaking lunch where Dr. Rodney Appell gave a presentation on the Interstim and Dr. Christopher Smith gave one on Botox. On the tables were folders with information about the doctors, etc. and to my suprise a copy of the interview I did with the Houston Chronicle. I didn't know anybody assigned to my table but we all had name tags. During Dr. Smith's lecture, the lady sitting next to me at the table started looking through her folder and then just sit it down. A few minutes later I noticed she kept looking at my name tag. All of sudden she announced to the table that I was the individual in the article. Suprise!!

Two weeks after a national interview I did was aired I went to the ICA's conference in Alexandria, VA. Standing in the long line in the restroom, I noticed two ladies ahead of me kept looking at me and whispering. I thought maybe they recognized me but couldn't quite place where since I had cut my hair and dyed back to brown from blonde. Anyway, I finally made it to a stall and when I came out both ladies were standing there outside my door. One lady asked: "Have I seen you somewhere before?" I replied: "Maybe, I don't know." She then replied: "Were you on television?" All of a sudden the other lady pointed at me and very loudly said: "You are the Botox Lady!!" At that point every lady in the restroom turned around and suddenly half of them recognized me.

Nothing like having your 15 minutes of fame being known as the "Botox Lady".

Cindy

[Italia]

Hello all,
Not sure I understand how to post.. here I go :)
I'm dx with cystitis. I have urge/frequency, no pain. I've been on about 5 meds..none have worked. I have had cystoscope, plus machine that measures capacity ( sorry forget the name) and a bladder biopsy.
My urge/frequency has gotten so bad interfering with a normal life that I'm now on Antidepressant too.
I'm ready to try just about anything but am so concerned over retention issue, if I decide to use botox injections. I read 300, 200 units etc.. what do these numbers translate into? What is a unit?
I do not have use of one hand so self catherizing would be impossible. Any idea what/who help? I can see the $ mounting if I need private nurse :(
I understand medicare does not accept/pay for this procedure. Approx. how much have others paid? My Uro has never used botox but wants to and I would be his first patient. Also, he tells me it's an office procedure.. no sedation just local anethetic (LIDOCAINE)I believe is what he said. He knows my concerns. I'm also concerned about pain , LOL Thanks everyone!
MimiG

Hey, i am also going to have botox for the first time. Like you, my uro has said that he will use only local anesthetic and im quite worried about the pain afterward and during. Mine would just be injected into the bladder. I think really id prefer it to be general anesthetic at least that way i wont remember it! :help:

[MimiG]

Hey, i am also going to have botox for the first time. Like you, my uro has said that he will use only local anesthetic and im quite worried about the pain afterward and during. Mine would just be injected into the bladder. I think really id prefer it to be general anesthetic at least that way i wont remember it! :help:


LOL, I would too! or :bonk: me on the head to put me out, lol
I'll report back when his new office manager gets the botox ordered. Also, when hubby has his medical concerns addressed. Hopefullly it will be soon.
Retention is my biggest worry, Cinsin has been very helpful responding to my questions. Keep in touch
mimiG

[Lori Campbell]

Hi Jeanniebug ,
Yes , I had a bad reaction to botox , that was injected into my bladder and pelvic floor muscles . I went under for this treatment , but I am sure they used a scope ,then injected into different areas of the bladder , and then into the pelvic floor muscles . I woke with a catherder in and was kept for over night with a solution running into the bladder , I was dicharged the next day . This was performed at Graduate Hospital , by Dr. Whitmore . I started getting flu like symtoms after I got home . At that point diaherra , then vomitting , then my pain got worse with each day . Soon I had to use a cane to walk ,then two canes , a walker , and crawled to get up steps . So as you read this , be aware , that I could of had adverse reaction to this procedure . There were many things not explained to me . So make sure you ask allot of questions , and make sure how they will treat you ,for during your treatment and after . I lost my specialist because of my complications from this procedure . So make sure your doctor won't treat you like that if you respone badly . I certainly would never what to be treated so badly again , and I hope to never hear anyone else being treated in such a way . It took 2 months before things started to get better . I am now going to my 2 new urologist on 11/22/05 , where I hope to set up a Hrdrodistention , and with this procedure , find out the condition of my bladder now . I feelthere has not been hardly any improvment , but we never know , it could of help . I let you know . Good Luck and take care . :bonk:

[jeanniebug]

Thanks Lori. At this point, I'm not going to try Botox or Interstim. I've researched both and read too many complications from both..I have enough problems without adding that to the mix. ;) Thanks for sharing your experience. :grouphug:

[Daffie]

That sounds horrible. I have never heard of anybody reacting that way to botox. I have never heard of anybody having a solution but in their bladder for 24 hours either. What was the solution? Botox is not suppose to migrate into your blood stream or other organs? I usually have some flu like symptoms after the procedure but I do with every procedure or sugery I have ever had. Mine is from the anesthesia. I have had botox several times and never had any more trouble with fatigue and flu like symptoms than any other procedure.

Sorry that happened to you and I hope you are better.

[bigred]

I see my doc. on Wed. He mentioned last time I was in about trying Botox. I am a little scared about the thought also. Read all your messages and I am still confused. He called today and says he wants to see me Wed. I am sure it is to follow up with Hydro. So what advise due you give? So I talk some more to him. I guess the thing to do is look up botox and see what the articles have to say. I don't know that this is the time since I just was diagnosed with Cronic inflamentary colitis. I hope it works for all of you. Got alot of thinking to do.