Tuesday, November 7, 2017

Surgeon: "what? Are you crazy?"

Like I said in my last blog, this one isn't going down without a fight. And it's going to choose when.

The meeting with the surgeon yesterday left me bawling in the hallway afterward.
He examined me, he examined the CT scan films closely, and declared confidently that everything is in it's rightful place, exactly where he put it 8 years ago. The mesh is fine, all the pins/clips are holding up fine. "So where is all this pain coming from?!" He couldn't answer that question. He suggested I turn to a pain clinic for help. I asked if we could do an exploratory surgery, I am sure something is going on and maybe it can only be seen from the inside. He then said "?מה, השתגעת" ("what, are you crazy?"). I said, yes, I am going crazy from this pain, I am about to jump out a window. I am completely unable to live my normal life, I can't be on my feet for more than five minutes without being in searing pain, so yes, I am a little crazy at this point with you telling me there is nothing wrong. He said he would never do a surgery without good reason, and especially on me, with my history of infection. He's right. Of course he's right. But Oh My G-d, that is NOT what I wanted to hear. Walking out of his office with no plan was not one of my plans.

So I got to a bench in the hallway of this very posh office building and cried while Robert curled his arms around me, soothed my heaving, sobbing shoulders. No words could be said.

The office tower was part of an upscale mall in Ramat Aviv (a part of Tel Aviv). The kind of mall where every store you pass you say "really? People buy that stuff?", and everything is 10 times overpriced. (I felt so Bourgeois.)

Robert was sure I'd just want to go home. I never have much of an appetite these days anyway, and I was so depressed. But surprisingly I said I wanted to stop for lunch at McDonald's. Now know this- Never in my life, not the 23 years I've been in Israel with Kosher McDonald's around, have I ever desired that food. I've been the one who will go if the family wants, but not get anything. I never wanted it. NEVER. And now? With my digestion issues and pain and everything going on? I don't understand it at all, but I wanted McDonald's. There were some beautiful coffee shops around, but I told Robert I wanted old Micky D's. There was one in that mall. I had no idea why I would want that, I haven't even been eating red meat for months. But we now know why.

As we were ordering from the new-fangled order machines, there was a very pregnant woman and her young daughter, also speaking English, ordering at the machine standing next to us. We were trying to navigate this system which was all new to us, and the woman next to us was saying it's totally different than in America, too. So we started up conversation! We got our orders, and decided to sit together, we were enjoying each other.

Turns out she just moved to Israel with her family recently, a few months ago, and was brought up in Locust Valley, just a few miles away from where I was brought up on Long Island. But that was just the beginning of our connecting.

There is magic in Israel. I often forget that. I used to feel it a lot, like all the time, when I first started living here. It's a "newby" feeling, the magic. It wears off, we get used to it. It happens all the time; meeting people who become highly significant in your life, connections to other people who are highly significant. Marriages and babies happen this way, and lives get saved regularly this way. It's a way of life here, you see it all the time. This land is a magical place, the Hand of G-d is almost palpable when you live here, you can almost feel it on your back as you move. But after so many years of living here, sometimes we stop feeling it, or stop noticing it. So yesterday, at this table in the swanky mall, at McDonalds, with this woman and her daughter and Robert and the melange of Kosher but questionably nutritious food scattered about? The hand of G-d was there, too. I'm quite sure of it.

There is a long, involved story here, and I may need to cut it into two blogs, but I'll try not to lose you in the explanation. It's all about when one door closes, another opens. I'm going to call my new friend from McDonald's "R". Oh, and she's pregnant with twins, and apparently that's quite a miracle because every obgyn in the continental United States told her there is no chance of her ever getting pregnant again. The daughter she has (who was with us yesterday, she's 6) was pure luck, count her blessings, and cut your losses. She had a uterine disease called Adenomyosis. This was responsible for her fertility problems, and nobody could help her.

Nobody until she got to this certain Obgyn here in Israel named Mashiach. (that really is his name). She asked if I had heard of him (knowing I was a doula, she thought maybe I'd heard of him). Yes, I knew of him, but not from my doula world, but rather from my personal medical world. He had preformed a surgery on me during my hernia mesh surgery 8 years ago, the one we just were checking about just a half hour before that conversation. During that surgery I needed a gynecological procedure done, and my surgeon recommended to hire this Dr. Mashiach, so I did, and he came in to do his part for like 20 minutes, and that was that. I wasn't ever really a patient of his, never did any follow-up with him at all for that. But when I told R about my pain now, and what I am experiencing, also regarding my menstrual cycles, and the large fibroid tumor that was also found on the recent CT scan, and my history including a c-section, she said emphatically "go see Dr. Mashiach. He's the one who knows about this disease." He's the one who got her to the point of this pregnancy she is holding, that nobody else could help her body accomplish.

For a while now it has been kind of an assumption that I have another uterine disease called Endometriosis. It's similar but different to the other one, Adenomyosis. This new friend, R, said she used to have constant abdominal pain like mine, that changed with position, like mine does. This is a positive lead for me. So I called Dr. Mashiach, and of course he has no openings in his schedule for another month. The secretary said she'd call if something earlier came up. I don't know if Rav Fisher can help us with this particular doctor, we'll call him to find out.

That's one avenue that needs to be explored.

The other avenue is my migraine medicine. Topomax. It's a scary avenue because it means my migraines will come back. There is a rare but well documented side-effect of this medicine that is can cause abdominal pain. How strong and what sort isn't documented, but I have to see if going off the Topomax will take away the pain. I don't want to go off it, I LIKE not having migraines. I usually get them at the frequency of one or two a week. It will be more with withdrawal of the medicine, and there isn't much I can take to get rid of the headaches. I am perhaps inordinately scared to go off it at this point. I feel I am maxed out on pain, and adding migraines to it might just make me go insane. I am not sure I can handle it. Of course, ideally, if the Topomax is causing the abdominal pain, it will magically go away when I go off, and we will all live happily ever after. 
(Yeah and then monkeys will fly out...........)

I have done many, MANY medicine withdrawals. Most of them in uncontrolled environments, at home, but under doctor supervision. The most famous was the Fentanyl, of course. I was a mess for 10 months, but I did it. More like a year actually. I now doubt my inner and outer strength to endure this withdrawal. I just don't know if I can handle it. I have already endured more than two months of HARD pain in my body, I am not starting out on a good foot. Now to willingly add migraines? Shit.

Part of me just wants to go to the Mayo clinic in Minnesota and check in for a complete evaluation, and not leave until I have answers. But as Robert said, we have to take care of the "low lying fruit" first- that being the Topomax, and I guess trying to get into the gynecologist earlier. GOD GIVE ME STRENGTH.
I'm losing more and more, emotionally as well as physically, as the days- and the pain- go on.

Sarah Rachel bat Tova


  1. Oy. Can you reduce the dose very slightly and see if anything changes. I don't know how much you're taking, but I'm thinking increments of 25 mg every two weeks.

  2. If you recall, just when you left on your trip I mentioned a neighbor here I just met who has frequented the same clinic at Ichilov as you have, and did eventually make it to the Mayo clinic. Get in touch if you want to get in touch. And refuah shlemah!

  3. B"H With all this going on you managed to come to my exhibition Opening! I so much pray that you will be relieved of all the pain.

  4. Knowing is half the battle... it's so disheartening being in agony and the doctors, at best, can't diagnose you, or worse, dismiss it.

    I suffer from "Dear God, kill me now" headaches, but since they don't present as typical migraines, the neurologists say it's not migraines. The ENT says my sinuses are (now) clear. I've had one dental specialist say it's temporal tendonitis, but a jaw specialist say no.

    In the meantime, every so often, I can't get out of bed, the room has to stay dark and as silent as possible, it hurts to blink... it hurts to THINK. And eventually it goes away.