Interstim

The appointment with Dr. Jaffee didn’t go according to plan. But I’m not sure why I thought it would be okay… Or why I thought it would go anything like what I wanted it to. Pffffft… how arrogant of me.

Remember when I asked Hibner to send me for PGAD, not the bladder? And I was assured, this is the place to go! I explained I didn’t want to see a urologist for bladder pains, just pelvic pain. And again, Betty, Hibner’s triage nurse assured me that Jaffee was where I should be. Hibner said so! Ok, now, remember when I called and made an appointment with Jaffee and asked that this be for PGAD? Made sure they knew it wasn’t bladder related… they promised it would be okay…

I am sad to say, none of the above was true. I freaked out and I almost bolted out of the exam room.

Jaffee never touched me. Never examined me and, He had never even heard of PGAD.

My whole body froze. Dead. Froze. Then I panicked. I couldn’t breathe. I couldn’t focus. I couldn’t stop the tears. I jumped to bolt….

And my brother stopped me. (((Ha! And to think, I had tried to talk him out of meeting me… nah, I said, I didn’t need him, it was just a consult to get some info… Hibner says he is good.)))

I don’t remember what all I said as I tried to bolt but my brother somehow made eye contact with me and got me to sit still. Here is the condensed version-

dr comes in. What can I do for you? I say, discuss interstim for PGAD. Dr smiles and says, what’s that again? I say, PGAD. Dr- *blink*blink* well, not sure what ‘that’ is but there are three reasons insurance will pay for an interstim. He recites them. I say ok but the bladder is a nuisance and not my concern. I can dismiss it. I have my whole life. I say, I’m here for PGAD and what experience you have with the interstim helping with pudendal neuralgia , pelvic floor dysfunction and PGAD. Dr says, again, insurance will only cover it for these reasons…. (I can’t even remember what the reasons were now). I say, again, I don’t care about the bladder. Hibner said you could help me. If you don’t even know what PGAD is then there isn’t a reason for me to be here. I made a mistake. You can’t help me. I’m out… I stand to bolt and brother says: Hang on… dr, I’d like to speak for my sister. I’ve watched her fight this pain her whole life and my other Sister and Its at a point that she is not well and we are worried. This is bad. She is withering to nothing. All through out childhood, Our mom told her to suck it up and dismissed her and then as an adult when she sought medical care, she was dismissed again. Doctors and anxiety are her reality. But… he turns to me and says- sister. Listen to me. He said he has to code it for bladder pain… code it. Not that it won’t help. Remember, how it’s coded doesn’t mean anything. What if it helps some of the pain? What if it takes care of some pain. It’s okay… let’s finish this.

I calmed down enough to discuss the pain I’ve lived with my whole life and the effects on me. Dr. Jaffee asked about the bladder pain, urgency and frequency. I then felt like I had to shift the whole appointment to the bladder and discuss only bladder. Of course, living with interstitial cystitis means that shift isn’t a problem for me because of the daily bladder struggle I’ve known since childhood. As i talk to Jaffee, I exaggerate how the bladder bothers me. *{It’s important to code it correctly, after all}* In reality my bladder has bothered me since I can remember… no memory is without bladder issues. I also discussed with him the need to be out of all current blocks and ‘in pain’ before doing the procedure so I’ll have to throw myself into a huge pain flare. *~makes me sick to think of it*!

Jaffee did make it a point to tell me there was no one in AZ, maybe even the west coast that’s done more interstims and if interstim is what I want, he’s the best for that procedure. It wasn’t an arrogant statement. More of a factual statement for him.

The next day, I picked up the Information he sent home with me and it’s complete bullshit. It’s a introductory Booklet on the machine and how it can ‘help’ with bladder pain, urgency and frequency. What the fuck! That means I have to call his office to get the info I am looking for or do a mass online search. Grrrrrrrrr Where is the meat to the procedure? Where are the leads places? What are they made of? Does approach to placement of leads change outcome?

Dr. Jaffee was nice and very professional. He didn’t dismiss me after I almost bolted… even after my panic attack! [{[and luckily he didn’t make the dumb ass comments about PGAD and it being a ‘good thing’ to have… He also didn’t make the mistake of saying it doesn’t exist]}] Despite all that, Jaffee failed to give me the one thing I was desperate for. He failed to reassure me that he believed the interstim would help what I wanted it to help. Or would help anything but the bladder. Hell, even help the bladder at all! I don’t know why I believed he’d have any experience with PGAD… maybe because Hibner sent me? The fact that he avoided it and wouldn’t even have a convo about me, about my pain, my life, my goals, my personal expectations and wishes with this procedure was, in my opinion, just an epic failure on his part.

I left feeling angry. Disappointed. Embarrassed. Heart broken.

The thought of coming home, facing my family with the emptiness of what felt like another failed doctors appointment had me crying the entire drive home. Feeling empty handed and loosing hope of an interstim helping me… the ‘loss’ of another potential procedure puts me WHERE exactly? Besides fucked? Made me face the reality of my situation even harder. I’m almost at the end of ALL possible treatment for what is MY pain. What a horrible thought. It steals my breath to think I’ve almost exhausted all of my resources.

When I got home, I was very raw. Trying not to cry. Pretending it was okay. My poor husband said something about- what now? Well…

Before I make the decision on doing this procedure vs the DRG (dorsal root ganglion), I need to now know the difference between and interstim and a DRG. The placement of both to compare the two, why/how they are different… but, It takes energy to examine these and I’m fresh out lately. I hope one of my PGAD ladies will pitch in an opinion…

While you debate on the answer to that question — these thoughts keep crossing my mind since the appointment: some pros on why I’d think of doing it: I have zero clue on where the *most pain is actually coming from. This could decrease the pain by 10% or 50%… I don’t know. Being a hot ass pelvic disaster kinda means my pain is just layers of this pain on top of that pain. While I think of the bladder as a bother and not important… Maybe it’s more and I don’t know it? What if I can do it and see if the interstim helps my overall pelvic pain and PGAD symptoms? What if I can help the other 300 people in the PGAD support groups I’m part of? It’s a trial. If it doesn’t work, worse case scenario? Remove the trial? Please weigh in…

I’m currently 3 months and three weeks out from my last Botox. I have zero idea how long I can go before I can’t stand the pain anymore? Pray I withstand the pain storm coming.

I’ll update with more information once I get all the pieces together.

Xx

LS

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