Sunday, January 8, 2012

Medical Update: the Three Week countdown.

My head is spinning, aching, overflowing with today's brand-new reality. My brand new reality.
Our brand new reality.
I'm really gonna need you all. You have no idea how much you mean to me. "My" readers... I count on you to carry me and encourage me to keep the faith.

I'll get right to trying to write an account of what happened today when I was in Tel Aviv seeing Dr. Rath. (Previously spelled "Rot". I know, the name-- you just have to keep remembering that it is actually "Roth", but he spells it this way in English. Just get it out of your systems. :-))

I've been up since 5am. I'm desperate for sleep, but I first have to write this out of me.

So in case you don't remember, Dr. Rath is the one who was called in to assist on my PVNS surgery when the doctor from the orthopedic oncology department at Ichilov discovered that he couldn't do the surgery on the day It was scheduled (and I was already hospitalized and ready for the surgery, then abruptly sent home.). I'll refresh your memories here.

So, I hadn't seen him since the actual surgery. It was nice to reunite three years later. He is considered now the number one hip specialist in Israel, especially known for his success with arthroscopic procedures like the kind I had with the PVNS excision.

He took my most recent MRI to look at. He looked, he consulted with another doctor, he looked some more, all the while with me waiting in the waiting room, listening to the secretary do her very busy job. Finally they called me in.

A few questions, where is my pain, when does it mostly happen, what helps, etc. I talked. All the gory details.
Came time to do the physical exam. Left thigh first. Lying on my back Dr Rath pushed, pulled, twisted, pressed on spots all over my thigh. It was AWFUL. He was hurting me so much I almost cried. Everything he did while asking "does this hurt? How 'bout this? Oh, sorry, just what about this? Mm Hmm, Now do this please"... you get the picture. OMG I haven't felt such concentrated, deep, searing pain in a long time. Just when the torture ended, he wanted to test the right thigh. Same thing, and although it did hurt, it was MUCH less than the left side.

We sat down to talk after this all.
Turns out that he is so impressed that I could be a textbook case for a brand new (to me) disease.

Yes, you read correctly, I have a new disease in my thigh joints. Both of them.
More letters to add to my CV of diseases I've survived.

Femoral Acetabular Impingement, or FAI.

Just pop it into Google and you'll get lots of articles about it.
Here is an explanation, and here is a video, not for the weak of heart (J.O.- if there's one thing you're not, that'd be weak of heart ;}).

Dr. Rath said lots of things about this all to me. I can't write it all at once, it'll come out slowly over the next few weeks. One thing which has HUGE implications for my father is that this is a genetic disposition. My father has been suffering terribly for about a year with hip pain. Any of you who saw him at Dov's BarMitzvah in November saw how difficult it is for him to walk. I called them as soon as I could with this diagnosis, and now my father will discuss it with his orthopedist. My grandmother on his side also needed a hip replacement. This all means that I may have gotten it anyway, not having anything to do with the NF, or even the PVNS. The whole genetic thing can explain why the right side is joining the party. However, the case with my left thigh is MUCH worse. It's in quite bad shape. That *is* partly due to the scar tissue from the NF, growing into the joint, pushing the bone, displacing it much more than it may have been without that issue. He also says there may well be PVNS lurking inside the joint which we can't see. Why couldn't we see if there was more PVNS with the MRI? Because the MRI wasn't done with contrast dye. My other doctor did not order it with the contrast dye.

Where are we going with this?
Back. Into. The. Operating room.
On January 30th, 2012.
In just about three weeks.
Am I scared? Yes.
It'll most likely be fixing both sides at once.

In the end, though, the hope and prayer is that I will be able to get off the Fentanyl and have a better quality of life.
B'ezrat Hashem.

More on this soon. I have to go to sleep now, I'm so entirely wiped out. Maxed out.
We'll get through this.
Together. You, me, Robert, the kids, and Gd. Not necessarily in that order.


  1. Sarah,

    I never know what to say to your posts, other than to send you love and hugs. Is there anything I can send you from America that would make life easier? Anything silly that would fit in an envelope that would cheer you up?

  2. Your hips have hit the lottery again, it seems. This is really scary but with help you can get through it, and maybe at the end be at a better place.

    My thoughts are with you for the next three weeks.

    (Beth from oct98)

  3. Stunned by the news. You must be strong. Let me know please how I can help.

  4. You know, Ms. Sarah, you are quite impressive and extraordinary to have yet another rare disease in your body.

    May this surgery lead to a more fulfilling recovery. You can count on us!

    Love, M

  5. While I'm so sorry this isn't something that can be fixed without such a big,invasive procedure, I'm glad that you have a real diagnosis from a true expert in the field and that he holds out hope for a better future. Sending good thoughts your way.

  6. I'm sure this isn't what you wanted to learn. The upside is that you have a "real" diagnosis of the problem and have received a means to resolve it. There is a lot to be said for being able to see beyond the immediate to the "light at the end of the tunnel". You can be sure of love and positive thoughts coming to you.

  7. I actually almost called the blog "*THE* light at the end of the tunnel". I totally agree with what you are saying, Edna. Still hard to face my 7th surgery in 4 1/2 years, though.

  8. Something curable!
    Richard Tasgal

  9. Yes, true, Rich. I just wish it wasn't going to take surgery to cure it. AND, I hope the surgery *does* indeed cure it. B'ezrat Hashem.

  10. you will be in our tefillos for a complete refua! please try to rest and eat well for the next couple weeks before the surgery. rochel.

  11. Hopefully this is *the* answer that you have been needing. I pray that you and your family can enjoy these next few weeks and all stay healthy in the process.

  12. That exam you endured sounded like such a dreadful ordeal. Thank you for finding the strength to write this blog entry later that day. As for the MRI, it must be so frustrating that the contrast wasn't ordered, preventing important information from being gleaned.

    So here were are, your readers, all in your corner!