Monday, June 23, 2014

Introducing another medical wild card into the picture

I have two different doctors for my two hips.

Left hip is the one that has the scarring from NF, and from the PVNS disease. PVNS is a disease that has a 50/50% chance of returning after the tumors have been removed. My surgery to remove the tumor was in 2009, and I summed up the entire story of finally getting the diagnosis of PVNS here. The latter one brought back many memories of the year it took me to convince any doctor that something really is wrong in my hip. Nobody believed me. PVNS is a very rare disease, nobody knew what they were looking at with my MRI.

So, my point in mentioning this all is that recently, like starting about a week before my scheduled right hip surgery (not-PVNS), the left hip started acting up. There were a few days that it hurt more than the right one.

The left hip needs an orthopedic oncologist for that disease, and my doctor for the right hip is a highly specialized hip/shoulder sports orthopedist. I know, it's crazy to have a different doctor for each hip, but here it is.

I haven't had an MRI for the left hip, to check if the PVNS is returning, in a long time. I have to try to check when, but it's been about a year. I am supposed to have one every 6 months, but it seems we dropped the ball on that one since the right hip got bad.

So, this led me to wonder if I should get an MRI on the left hip before I go ahead with the right hip surgery? It is mind-boggling. Completely. PVNS is more dangerous than the hip impingement/labrum tear I have in the right hip.

I am just *sooooo* confused. After the right hip surgery last week went down the way it did, in the back of my head I wondered if I would ever actually have a chance to get my right hip fixed. I felt like it will never happen. I need to see an allergist (just got the referral for that today, I need to make an appointment), then an infectious disease doctor. I'd need that with any surgery I have to do. There is no real reason why it will never happen, but my head jumped to the illogical conclusion that the surgery will not ever happen. Something in me felt like it *knew* that to be a fact.

As far as timing, yes, it could still be done this summer. But, I am fully planning on going to America in the beginning of September to go to a writer's conference headed by my mentor for my book writing. At the same time, of course, taking the opportunity to see my parents. I can't make that trip on crutches. I mean I could, but I don't plan on it. Way too hard. If the surgery is postponed for more than the middle of July, I have to wait until I return from that trip. Then of course, I get into the territory of Shifra's BatMitzvah, in November 2014.

What if the PVNS is returning, though (God forbid)? If I go through right hip surgery, then need left hip to deal with PVNS, that is a bad scenario. Maybe that is why my surgeon (the one who aborted last week's surgery because of the antibiotic reaction), at first, told me he does not want to go into either hip, unless it is PVNS. He does not want to operate on me because of my whole background. He tried to talk me out of getting my right hip fixed, but told me he would do it if I chose to. I have so much pain from it, that I made that choice to fix it, and he supports my choice.

Now, should I follow my tiny but nagging voice that tells me to get an MRI for my left leg before I reschedule for the right? That could hold things up for quite some time. It can take months to get an MRI date. On the other hand, I could possibly schedule the right hip impingement surgery for sooner if I weren't waiting for an MRI. Or, maybe I could call every hospital in Israel that has an MRI machine and try to get a close appointment. But first I have to get in touch with orthopedic oncology to see if I can get a referral for an MRI without coming in for a check-up, or if I'd need an appointment there first (another thing that could take months).

You see where I am going with this?
It is so murky... I am so confused.
Was the surgery cancelled so I could get some perspective here regarding the importance of keeping tabs on the PVNS disease? Obviously it was canceled for the plain reason that I need allergy testing for antibiotics. I need that no matter what, and, frankly, I am relieved that we will finally know what I am and am not allergic to. Every time I need an antibiotic it seems like a shot-in-the-dark.
But the fact that pain has gotten more intense in the left leg makes me sort of raise an eyebrow (I could never do that with just one eyebrow. My daughter Shifra can, though! It's hysterical).

Basically I feel so lost about how to go about improving my pain. That's *all* I want. To get relief from pain. The underlying force to my every waking daytime hour revolves around pain.

Since the day of the first surgery which led to the NF, I have not had more than two or three days in a row with no pain. Narcotic pain medicine has been my constant companion for 6 years. It started around the time after I had the PVNS surgery, followed shortly thereafter by the appendicitis. Here is that post.

OK, I got it all out. It is jumbled and confused, but I spit it out onto paper.

Man, on top of all this, I have a list a mile long of very important things to take care of for the kids, and for my book! Building a website, getting ready to reveal the name of the book and move the blog over to the book website. Investigating schools for my son who is going to move to a new high school next year. Signing up for camps, paying for camps. It is very stressful this summer regarding money with three in sleep-away camp. It gets to about 9 months of mortgage payments! And I don't work. It is so important for us to give the kids these experiences for the summers, and this camp is awesome. It is part of our value system. Having them stay around the house without a particular daily goal is a terrible way for a kid to spend the summer in a city.
Shifra needs braces, and that is another big chunk-o-change. So many things on my shoulders... lists getting longer by the day.

I will go on, one day at a time, and Robert will, also, fighting his own exhaustion constantly.
I need to go to sleep.
Please forgive me for a confusing, complicated post. I just had to get it out there, to work out my own thoughts and worries.

Will I ever be out of pain?
Is that a goal Hashem wants me to build upon?
Will I ever be out of pain? Ever get off the narcotics?

One Day At A Time. I pray the answers will come to me clearly.

And while we are talking about praying, please pray, with all your soul and being, for the safe return of the three Israeli boys who were kidnapped over a week ago. Their names are:

Yaakov Naftali ben Rachel Devorah

Gilad Michael ben Bat Galim
Eyal ben Iris Teshura


  1. So, Sarah, I am not religious at all but I do believe in listening to what is happening around us and to us. GET THAT HIP CHECKED!

  2. you have been through a lot. I can't imagine dealing with constant pain like that. I'm praying that the roads lead to a happy pain-free future.

    1. Amen. Thanks for the optimism! I could really use it now. Since last week's surgery got cancelled, I have been pretty down about things.

  3. Listen to your inside voice- it is your soul speaking.