Tuesday, November 22, 2011

More medical stuff- two appointments

Yesterday was the dermatologist appointment regarding gapey's 'perma-rash'. This was the appointment that was six weeks past the biopsy.
Blessedly, the biopsy showed that the strange rash is *not* skin cancer, as was the suspicion. It didn't, however, have any conclusive results as to what it is.
Once again, I have a strange medical thing that is stumping doctors.
We are trying yet another new cream, and I am now supposed to keep it covered.
Next follow-up in a month.

Then today, I went into Tel Aviv for a follow-up with Prof Meller in Ichilov. This time, however, I had no new scans for him; my next scan isn't scheduled until December. I called last week to see if this appointment is necessary, taking into account I have no new scans, and the secretary said it is an important appointment and suggested I not cancel. bleh.
I saw Dr Bikels today though, not Prof Meller. They switch off in the out-patient clinic, though I hadn't seen Bikels in a long time.

We talked about pain.
I told him I am on the Fentanyl patches now and they are helping a fair bit (but not fully).

I expressed my frustration that *I* know, and *he* knows, that we don't have any new ideas for me regarding this cycle of pain and narcotics. All there is is more of the same.
I asked the question that was sitting like an elephant perched upon his little desk- if my scan is good, then where is all this pain coming from?
"That is the question, isn't it", says Dr Bikels. He said that he has seen many patients with hip joints completely shot, in much worse condition than mine, and they do not need Fentanyl for the pain. Fentanyl is a *very strong* narcotic; stronger than Morphine.

He wonders if the pain *is* from the hip joint, or not.

He had a few ideas to try to focus the next step. Fist he wants me to go have another consult-- this time with Dr. Raht (pronounced vaguely like "Roth", but Israelis don't have the "th" sound very much). If we remember far back, I had a few consults with Dr Raht when he was still in Be'er Sheva. Then, he was on the team of surgeons who actually did my arthroscopic surgery to excise the PVNS in Ichilov hospital. Shortly thereafter, Ichilov took him on, causing his departure from Soroka. He is now considered "The" expert on hip diseases in the country.
I'll go see him after I have the MRI scan done in December.

Dr Bikels also had an interesting suggestion for a type of test they can do to see if indeed the pain *is* from the hip/thigh joint. They can isolate and numb only the joint itself, nothing else around it. Then I can see if I still have the pain, or if it's gone. I'd have to go off my pain meds for a while beforehand so I can feel all the pain that is there, in order to be able to identify exactly what I feel.

Doesn't sound like a great test... I don't like the idea of needles going directly into that joint. *But*, it would be good to know what is going on there. It very well could be some other type of pain; there is so much damage to that whole area.
It's just that I *feel* the PVNS. I feel the feeling that existed immediately after they did the biopsy, it is inside the joint. Also, recovering from the PVNS excision surgery, I got to know very well the pain that joint has to show me. *That* is the pain I feel.

The other pains I have-- from the mesh surgery a year & a half ago, gapey pain, nerve damage pain down the thigh-- I can differentiate all of it. But I also know that pain has many tricks it can play, and that nerves can fool you very well, like a ventriloquist can throw his voice.

My NF got out of hand because of "referred pain"; the surgeon didn't understand what was going on; the area that I told him that hurt looked pretty ok. It didn't look infected because it wasn't the area that was infected, the pain was being referred from the groin area to the outer hip.

I don't know.
I still like the starry idea of having a hip replacement and getting off all the pain drugs.
Would that it could be so simple.


  1. Sarah,

    I'm just grateful to hear that the rash had a good test result, even as the suffering continues. I'm struck by how you can simply write "Next follow-up in a month" when relief and rescue are surely wanted immediately. G-d willing, the relief and rescue are on their way!


  2. hi sare, it's been awhile, how are you?
    Dev from NJ