Maybe this is the last time…..

Last week, I mentioned that I had surgery on my bladder, and that MAYBE it was the last time.  Not the last time I will need surgery, but MAYBE the last time I will need surgery for Botox injections in my bladder.  If you are interested in learning more about the how and why I have this done, please check out an earlier post, “You’re getting Botox where?”

The ‘short story’ is that I have both urge incontinence and urinary retention in my bladder, which makes my bladder have TOO much control in my life.  I currently self cath every day, have Botox surgery 2 times a year, AND receive PTNS treatment every 4 weeks to manage these issues.  Oh and I really try to laugh about it….smh

Some time ago (a couple of years ago), my urogynecologist talked to me about an device made by Medtronic called Interstim. (pictured above)

InterStim Therapy at a glance

The root cause of overactive bladder and urge incontinence are the sacral nerve roots, which control the muscle impulses that cause the bladder to expand and contract.

  • InterStim is an FDA-approved surgical implant device used to treat bladder incontinence and overactive bladder.
  • The device works by sending mild electric pulses to control symptoms such as leaks and urge incontinence.
  • InterStim can be reversed or discontinued at any time during therapy.

My first thought was SIGN ME UP!!!!  I immediately began researching this device.

The problem is, the device is not MRI safe.  ARGH!!!! (I HAVE to have MRI’s every year not only to stay on Tysabri, but to monitor my Multiple Sclerosis, and every other new injury I get.)  DAMN! DAMN! DAMN!

My doctor told me that the company was working on making a device that would be MRI safe, and it was just a matter of time.  MAYBE that time is now?!?!??!

Medtronic announced it’s submission of an MRI safe Interstim device to the FDA

This device is already being used successfully in other countries!!!!  If you have any experience with the FDA approval process, you know that it’s not quick.  My doc says that it was approved and should be available in April.  I haven’t been able to find any other source to confirm that though, so I elected to have the Botox surgery once again.

Even if the device is improved and that is the route I take, there is still no ‘guarantee’ that it will work for me.  There is a two week test phase etc.  The Colorado Woman’s Health website, provides a great source of information about the procedures etc, if you would like to check it out.  (IMO even better than the manufacturer’s website)  If you want more information, both sites are worth visiting.

Another treatment that I use is PTNS. (Percutaneous Tibial Nerve Stimulation)  IMO, this works similar to the Interstim device, but is performed without surgery.  I’ve posted this video of it being performed on my Youtube Channel if you would like to see.

Talking about bladder issues is almost as uncomfortable as living with them.  I said ALMOST.  If you are experiencing issues, PLEASE talk to your doctor about them.  There is help!  I have been dealing with my issues for over 20 years.  In the beginning, less invasive treatments: kegel exercises, bladder retraining, and medications worked for me.  Maybe I developed a resistance or intolerance to them and had to move on to the treatments I currently use?  I’m not sure.  I do know that the isolation and self esteem issues can be overwhelming.

If you have any questions, please feel free to post here or message me.  You can also contact me on my Facebook page.  I’m not a doctor, but I’m open and honest.

 

Another surgery?!?!?

Hopefully the last one this year…..smh

I haven’t seen the surgeon to follow up about my foot surgery yet, so I’m not sure that I’m “done” there yet, but I FINALLY have surgery scheduled for Botox in my bladder on Friday.

The last time I had this surgery was February 9th of this year, and since it only helps relieve symptoms for about 4 months, let’s say I am WAY OVERDUE.

If you’re interested in reading more, the link to that post is here….

You’re getting Botox where?

Both the surgery and “recovery” for this one will be a piece of cake, to be honest the scheduling of it is the most difficult part.  I also hope that doctors are able to come up with some other “treatment” soon because I suspect my body will develop an intolerance or tolerance for it.  (you know when a treatment just stops working?)  and having to carry or wear a bag of pee just plain sucks.  (yes even though I have officially given it a name, it still sucks).  So YAH surgery?!??!

While I’ve got you here though, (I hope you’re still reading).  Can I tell you about my foot?  AGAIN?!?!?

First the “technical stuff”

Today marks one week post op.  I see the surgeon again on Thursday.  I have FINALLY been able to put  weight on it (with the Boot on)  AND can tolerate the pain without pills!

even upI have even been able to walk to the bathroom as long as I have the “even up” on my other shoe to help realign me, stand up straight?  I’m not sure how to explain it, but it makes my shoulders straight when standing and takes pressure off my right hip.  Win win

Since I can get to the bathroom easier now, I was able to take the foley out.  First time I am ever grateful for having such a small house.  (10 steps in one direction from my computer to the bathroom and 15 steps to my bedroom in the other direction).

I no longer have to stay in bed

Keeping my foot elevated is still important though.  I was even able to get the wheelchair out of my house by myself.  I went for a “different” kind of walk the other day, more of a roll?  While I wasn’t able to take my “normal” walk, I did make it around the entire block in the wheelchair, using my arms for a portion and my left leg for the other.  It felt great to be moving again.  I know it will still be a long time before I am able to really walk again, it was freeing to know that I can “get out” by myself…and it’s a hell of a workout to help shed the pounds from all the ice cream Jeri delivered.

Thing One and Thing Two

Although Thing 2 and her boyfriend have been helping tremendously, (Ice pack and coffee deliveries right to my bed)  it’s refreshing to be able to do it myself.  Thing 1 and her husband stopped by to check in too.  She is 5 months now and the baby bump is really there now!!!!!!  As I have said before, I’m only a LITTLE excited!!!!!!   Yah grandbabies!!!!!!

granny imageWhile having so much time to ponder, what I would like to be called,  I think I am going to hope for Mammy,  but I will write more about that later.  I do know for a fact that GRANNY just isn’t going to cut it.  I can’t hear the name without thinking of Granny from the Beverly Hillbillies….. While I do have her spunk, it’s just NOT gonna happen.

Several of you have commented the you are sorry that I am going through so much, and I really appreciate it, but please don’t feel sorry.  I have amazing friends (you included) and family, and have never felt so loved.  Even Einstein has delivered food and….shhhh cigarettes :(.  I will pick up that battle again, just not today.

Thank you all for reading and commenting.  I am sorry that I have missed so much going on in your lives, I will remedy that today.

 

 

 

You’re getting Botox Where?!?!?!

IN MY BLADDER

Who? What?  WHERE?!?!?…..     In your bladder?!?!? 

(Jokes about a bad connection or needing glasses)

Seriously though,  in my bladder (although some other areas could maybe use it to)

I have neurogenic bladder which is described as:

Neurogenic bladder is bladder dysfunction (flaccid or spastic) caused by neurologic damage. Symptoms can include overflow incontinence, frequency, urgency, urge incontinence, and retention. Risk of serious complications (eg, recurrent infection, vesicoureteral reflux, autonomic dysreflexia) is high.

FOR ME, personally, this means when I have to go I have to go.  Get the hell out of my way it is coming NOW!!!  Most times I can tell that I have to urinate before it happens, but not always, and just because my brain sometimes gets the message that I have to pee, it doesn’t mean it lets me know that I have to go more than 10 seconds before it starts to flow…… smh… yeah yeah “it sucks to be me” I know.

Just to keep it interesting though, my body seems to have forgotten HOW to pee.  So my brain gets the message (most times) “Hey you should probably RUN”, and I attempt to move as quickly as possible toward the nearest “facility”.  I get there, and then NOTHING!  Not even a drop sometimes!….ARE YOU FRICKING KIDDING ME?!?!?   How do you live with that?

Learning how to Self-catheterize

For starters, I self- cath.  I have included this link not only to show a “carton image” of how the whole thing is done, but because it cracks me up that even a medical site doesn’t really “get it”.  One hand to spread your labia, your second hand to insert the catheter, and your THIRD hand to hold a mirror?!?!?…lol yeah good luck with that.  Either way I have figured it out, and it helps.

I try to pee on a “schedule”, and before I leave the house, or before I have sex, or go to the store and and and.  I’ve also learned which drinks aggravate my urgency (surprisingly water is worse than coffee) but more on this at another time.

Percutaneous Tibial Nerve Stimuation (PTNS)

I’m not even going to try to explain how this works, but it does help with the urgency.  Here is a link that does explain the science behind it, if you are interested.  I’ve also copied a portion of the site here:

Percutaneous Tibial Nerve Stimuation (PTNS) is a low-risk, non-surgical treatment. PTNS works by indirectly providing electrical stimulation to the nerves responsible for bladder and pelvic floor function. During PTNS treatment, the patient’s foot is comfortably elevated and supported. Also during treatment, a slim needle electrode is placed near the nerve at the ankle known as the tibial nerve. A device known as the Urgent PC Stimulator is connected to the electrode and sends mild electrical pulses to the tibial nerve. These impulses travel to the sacral nerve plexus, the group of nerves at the base of the spine responsible for bladder function. 

By stimulating these nerves through gentle electrical impulses (called neuromodulation), bladder activity can be changed. Because this change happens gradually, patients receive a series of 12-weekly, 30-minute treatments. After the 12 treatments, when the patient’s response to therapy is assessed, occasional treatments may be needed to sustain symptom improvement.

The last time, I went for my “maintenance treatment”, (which is every 4 weeks) the nurse let me take a short video showing how the procedure is done.  I have posted it to my Youtube channel if you want to see.

Botox Injections for Urinary Incontinence

Okay FINALLY to the point of this post.  I am having surgery next week for Botox injections in my bladder. Yes fricking surgery….AGAIN!!!  The Botox website SAYS that the procedure can be done in the office, and it can, but for me it has to be surgery.  😦  I can’t really explain why.  I used to drive to Chicago (2 hours away) to have the procedure done at the University of Chicago, and then drive (albeit uncomfortably) the 2 hours home, but  I had a “falling out” with one of the doctors there about the frequency I felt I needed it and the frequency she was willing to perform the procedure so I have been having it done locally for the last 2 years.

Why does it have to be surgery?

The doctor who performs the procedure locally does not have the equipment or permission or something to do it in his office, so I have to go to the hospital.   To use the operating room at the hospital, they have to call it surgery?  I have to go through the whole sedation game and get a driver because of that.  I have asked them not to sedate me when I go, hell they can even skip the numbing part if they have to, just do it and be done, but that hasn’t worked so far :(.  So next week, I am having surgery, if I can find a ride. ( weather permitting)  What a lousy day!

Surgery will be in the middle of the day.  They will require me to get there with only one cup of coffee in my body.  (They finally agreed to this after dealing with me with NO COFFEE, it wasn’t pretty…. people got hurt ) The check in, vital taking, meeting with the anesthesiologist, (countless nurses), and some doctors too will take approximately 4 hours, and then I will come home and sleep….smh…what a waste of a day.  Oh well, it is what it is, and for me the Botox injections have been the most helpful treatment for my bladder issues.

If you want more information about the procedure ( how it’s done, what bladder conditions that it treats etc) here is their website.  If you have any questions about Botox, or PTNS, self cathing or any other bladder treatments, feel free to send me a message.  Again, I am NOT a doctor, but I have a lot of experience with testing and treatments.  ( I was part of the FDA drug trial for Botox too).  I have lots of bladder stories, including my diagnosis which I will write about later.

If you are having symptoms of bladder urgency or incontinence TALK TO YOUR doctor.  I know it’s not a “fun” topic, but there are many things you can try to not have to suffer in silence.