Living with Interstim 3 months post op

Back in August of this year, I had the Interstim bladder stimulator placement surgery. In September, I wrote about my journey with Bladder Incontinence in a post called, Being a Human Guinea Pig. A few days later, I wrote a sarcastic, yet honest post about what I was going through mentally after having the surgery. At the end of that post, How did your Interstim implant surgery go, I said that the device was already in my body, so I should at least give it the benefit of the doubt. I have, and I would like to share.

Did the Interstim Device “fix” me?

NO

Did it help reduce my symptoms more than 50%?

Absolutely!

Do I regret having the procedure?

No

Would I recommend the Interstim device to someone suffering from Incontinence?

Honestly, I don’t know. ( Not very helpful am I?)

Maybe this will help

On a day to day basis, I don’t even realize that I have the implant anymore. By this I mean, I don’t really notice it unless I am looking for it. I don’t feel any pain at the incision site while I am sitting, driving, walking, bending over, etc. I use a leg press machine for physical therapy and have not had any issues with that amount of pressure against my back side either. I have to admit that I do miss the “ass pats” (spankings?) that Einstein used to loving provide, but to be honest we are both a little nervous about that experiment.

I did not die in the MRI

I was very anxious about having my quarterly MRI last month, (another story for another time) but after finding a location that had the equipment and experience to perform MRI’s on patients with implanted devices, my anxiety about my body being ripped apart while in the tube has been relieved. As a bonus, the pictures from the MRI model that they have to use are 1000x better than any of my previous 100 scans!!!

Going through Airport Security with an implant

I am pleased to report that I also did not die while going through airport security at O’hare or Denver airports. (I did this two times just to be sure.) Medtronic supplies you with a card stating that you have an implanted device and can not go through the metal or magnetic detector. You can also always ask to have a pat down from TSA, but I had no trouble standing in the usual “stand still here and put your arms above your head” scanner.

Other horrible things that did not happen

The above list had me terrified, but to date I have done the following and have had no issues:

  1. Driven a car without turning it off
  2. Operated power tools including a drill and a saw while standing on an aluminum ladder
  3. I carry my cell phone in my back pocket (over the device) for 90% of my waking hours
  4. Operated all household appliances including the washer, dryer, dishwasher, microwave, vacuum cleaner, freezer, computer, television, security system etc
  5. I have been to the dentist with my 2 year old grandsons, not as a patient

What HAS happened after having the device implanted?

Most of the time, I am able to hold 400-500 ccs of urine before leaking. (pre interstim and without Botox surgery, the number was closer to 150 ccs) I still have to use a catheter to empty my bladder completely, but am actually able to “pee a little” on my own (if that’s a thing). *Drinking Alcohol changes those numbers. Beer seems to run right through me. The carbonated or hard selzer drinks ( Vizzy, white claw, corona) seem to move a little slower, but still increase frequency and decrease retention.

The only other change

I have to “recharge” the device once a week.

As you can see, the recharger is about the size of my hand. Also in the picture is an elastic belt that you can put the charger in to wear while you are moving around. The Medtronic website shows a woman gardening while wearing her belt. Yay her! (This doesn’t work for me.) I have found that I have the best results and shortest charging time, if I sit at the computer, put the device under my underwear and don’t move for a half hour or so. For some reason, when I am re-charging, my right foot (the one that has that all the titanium in it gets very warm)

While uncomfortable, its not incredibly painful. Maybe it’s a coincidence? Maybe that is where the nerve that is being stimulated ends? I’m not sure. I could also turn down the charging speed, but it takes twice as long to charge and sitting still IS difficult for me.

If you are reading this because you or someone you care about it considering getting the Interstim, I wish you the best of luck. Only you can decide if it’s right for you. DO YOUR RESEARCH!

How did your Interstim implant surgery go?

GRACE : I can’t tell you.

Wonderful friends: What do you mean you can’t tell me? Weren’t you there?

GRACE : Yes.

Wonderful friends: Have you noticed any difference?

GRACE : Yes, my back hurts and I am supposed to do nothing for the next two weeks.

Wonderful friends: What do you mean nothing?

GRACE : I don’t know the drug rep said don’t bend, twist, or lift anything over 10 lbs, no driving, no sex, don’t touch it….. So basically nothing!

Wonderful friends: Well what do you expect, you just had surgery?

GRACE : Yeah yeah, I’m gonna go do nothing…Thank you for asking, ttyl

Two days later

Wonderful friends: Are you feeling better today?

GRACE : What do you mean? It doesn’t hurt as much, but I can’t really do anything so I’ve been kind of grumpy.

Wonderful friends: Do you notice any difference with your symptoms?

GRACE : Nope! I don’t feel anything. I’m still waking up soaked. I don’t know if the device is on or what it is supposed to be doing. The doctor hasn’t even called me back to tell me if I can take a damn shower….grrrrr

Wonderful friends: When do you see the doctor again?

GRACE : TWO WEEKS!!!!! I’m gonna go, they sent me home with all these books to read and I should probably get started on that.

An hour later

GRACE : Incoherent mumbling

Wonderful friends: Why are you crying, did you try to do something you weren’t supposed to?

GRACE : BECAUSE I DON’T KNOW WHAT THE FUCK I JUST DID!!!! I feel like I have a fucking alien inside my body! I am terrified to move wrong so I don’t break or disconnect anything, what if I end up paralyzed?!?!?!

An MRI is like the biggest magnet we are ever gonna come into contact with right? So If it’s MRI approved, I should be good right?!?!?!?!?

Why does this book tell me to AVOID ALL MAGNETS…stereo speakers, computer disk drives, keep everything a minimum of 4 inches away from the implant!!!!! So I can’t carry my cell phone in my back pocket?

OH! And I have to shut it off before driving?!?!?!?!?!?!?!?

What the hell did I get myself into?!?!?! Why wasn’t this information available before surgery?!?!?

OH and it says NO skydiving, or things that could jostle the impant. Does that mean NO Horseback riding?!?!? High Altitudes should NOT affect the device?!?!??!

Can we just say I had a really bad couple of days? Maybe even a couple more melt downs. I FELT tricked, lied to, deceived….you get the point. How could I go in an MRI (remember really big magnet?!?!?!?), but I had to be afraid of a stereo speaker?!?!?!?

Once I calmed down enough, I came to the conclusion that this device was already in my body, so I should at least give it the benefit of the doubt. I went through each of the books that they had given me marking each page with questions. (I ended up with 2 pages)

Finally the time came for my post op appointment. I knew that the drug rep would also be there and even though, doctors weren’t allowing patients to bring anyone with them to their appointments ( smh covid) I NEEDED Einstein with me, so HE WAS COMING IN WITH ME!!!!!

I’m not sure if it was the xanax I had taken, the fact that the office didn’t fight me about bringing Einstein in, or the fact that while we were waiting to see the Dr.we began talking to another patient that had also had the same surgery, (but for different reasons) but by the time we were shown to the exam room, I began to relax.

So far I have written about my emotions concerning this surgery. Emotionally, I did not do well. Do I regret getting the Interstim? Honestly it is too soon to tell. I DO however, regret that I didn’t meet with the Medtronic Representative BEFORE surgery. I WISH, I had seen the device, and all of the equipment that comes with it…but that’s on me.

Our conversation with the doctor and the representative lasted over an hour. I will continue to write more about my experience in the future, but I don’t want to leave you with any misconceptions…. Here are some points that were explained to me.

  • The interstim leads were NOT placed in my spinal cord, but by my sacral nerve. (meaning the device should not paralyze me, if I do get a shock)
  • The warnings concerning magnets is that they could turn the device off, but will not cause it to pull out of my body
  • Flying in an airplane is safe (I hope) and I am allowed to go horseback riding after I give everything more time to “settle”.

I’m am still nervous and anxious, but I’m no longer terrified. As I mentioned before, this device is already in my body, so I should at least give it the benefit of the doubt.

Enter the “How Grace-ful are you?” Contest

Grace-ful- knowledgeable about Grace Fullnot or msgracefulnot.com

On Saturday evening, I mentioned that there would be a contest today. In case you did not see the previous post, let me explain the terms here.

  1. Please do not post any answers to the questions until Sunday, September 6th between 9 and 3pm central time so that more people have a chance to enter.
  2. When answering a question, please include information as to where you found the answer (post name, guess, etc) *If you have the time, this part is not necessary to win.

Here are the questions:

  1. How old am I?
  2. Why did I select msgracefulnot as the name of my blog?
  3. How long have I had MS?
  4. What is the “address” of my advice to those diagnosed video?
  5. What is the name of the disease modifying drug I am on for Mulitple Sclerosis?
  6. How do I refer to my daughters in my blog? Can you tell me why?
  7. Which of those sweet little demons did I leave at the store?
  8. Name at least 3 places I have traveled to via plane in the last 2 years.
  9. How many times have I been in a boot for a broken foot? (this is a trick question, even I don’t know the answer)
  10. What is the most annoying symptom of MS that I deal with? Please list at least 2 treatments I have tried.
  11. Do you remember my German Shepherds name?
  12. One of my happiest memories from 2018?
  13. What do I call my significant other?
  14. What are my grandsons names?
  15. Do you remember how we met or how you found msgracefulnot.com?
  16. What is your favorite post that I have written?
  17. What 2 three letter words, or acronyms, internet slang do I use the most? Can you tell me what they mean?
  18. Bonus points if you share this post on social media, and share the location you posted to!!!!!!
  19. This is a “freebie”… If you are a blogger, can you create a post with links to past posts you that you have written that you feel would give a new reader a good sense of what your blog is about? If you do I will share the hell out of it….FREE ADVERTISING HERE!!!!
  20. If you are the winner, which rose would you like? With or without stem?

The winner will receive their choice one of the above pictured roses that I printed with my 3d printer mailed directly to their home or office. (more about 3d printing to come)

Thank you in advance for stopping by!

On second thought….

About a week ago, I wrote a post called “saying goodbye“. My credit card was billed $94.00 for a word press subscription that I wasn’t using, so I figured it was a good time to cancel. After posting said post, several of the friends I have made on WP advised me that WP had free version and I would only need to pay $18.00 a year to keep my domain name msgracefulnot.com. Hmmm ok that I could do, so I took down the Saying goodbye post, cancelled the paid subscription, and here I am.

Thank you again to those of you that reached out to me!!!!!

Why I stopped using Word press

For the greater part of last year, I made the conscious choice to avoid social media as much as possible. My personal plate was full and I couldn’t deal with all the negativity, fear, and hate being passed around between people. I saw sides of people that I could not imagine they were capable of, so after writing, Say what you mean, and mean what you say, I pretty much “disappeared.”

When I created my blog, my original intention was to provide PROOF that with the right amount of determination, creativity, and humor you can survive almost anything.  I wanted to help anyone that was feeling alone or overwhelmed with their lives, to see that they were not alone.  I believe that on many occasions I did that.

  1. I have written about  being diagnosed with Multiple Sclerosis. 
  2. I’ve written about choosing a disease modifying therapy.
  3. I’ve written about how insurance companies like to “play doctor”.
  4. I’ve written about my children and not winning the mother of the year award.
  5. I’ve talked about air travel with MS.
  6. I’ve talked about Train travel in a wheelchair.  and the importance of knowing your equipment and your limits.
  7. I’ve talked about being full of shit.
  8. I’ve shared some of the treatments for bladder incontinence and urge incontinence due to MS.
  9. I’ve shared some of my most painful moments.  (Mentally and physically)
  10. I’ve shared some of my happiest moments.

I mentioned earlier that I’ve had a full plate this year, but I’ve not been at all specific. There are multiple reasons for this.

In some instances, the stories I want to share, are not entirely mine to tell. For example, both of my parents are going through life changing medical issues. I can tell you how it’s been affecting me, but I’m not sure how much is TOO much to share. I’m still working on this.

Another reason for the vagueness is because the “jury is still out” about many of my health issues. While I can share what I have been experiencing, and why I’ve been doing what I have been doing, I still don’t know if my decisions were the right ones to make, so I don’t want to lead anyone astray if they are dealing with anything similar. I will work on this as well.

In the meantime, I would like to reintroduce myself, and invite you back into my world. If you are joining me for the first time, my About Me page, is a good place to start. (I wrote it a year ago, but I believe most things still apply.)

When I thought I was leaving wordpress, I was trying to think of a way to “go out with a bang.” I began creating a “contest” to attempt to draw everyone in, one more time. It has occurred to me, that I can use the same contest to “Come in with a bang”, or “get back in the saddle if you will.” Giving away prizes, opens the door to discussing some of the positive things that I have been doing over the last year as well.

On Wednesday, September 2nd at 9 am Central Time, I will post a list of questions about myself, or things I have written about in this blog. I do believe that most of the questions can be answered by reading the posts that I have linked above. (if not THESE posts specifically, the answers will still be available within my website) The prizes will go to the first two people that post the most correct answers to my questions in the post “How graceful are you?” in the comments section of that post no earlier than Monday September 7th @ 9 am central time and no later than 3 pm Central time of the same day.

I hope you will all participate. See you soon!

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.