Monday, August 31, 2009

The PVNS chronicles

Gosh, this has been such a long road.
It started last year in April '08, right after my cellulitis hospitalization, when the thigh/hip pain started to get intrusive.

Ultrasound, X-rays showed up nothing.
My GP blew it off.
May, June, 2008, pain increasing. Bone scan ordered by Prof. Giladi (my ID doctor). That showed up nothing as well.
Again, my GP blew it off.
I tried to, as well.
We went to America for a month. Pain increased, pain killers introduced into the picture.
Came back, told my GP
And again, he blew it off.
And I tried to, as well.
Pain increasing slowly but surely, trying new pain killers.
December '08, Prof. Giladi ordered another bone scan. Maybe the Osteomyelitis he suspected didn't show on the last one because it was too early.
Came back negative again.
I couldn't even try to ignore the pain anymore.
But my GP could, and did.
I then started fighting. Fighting to get a diagnosis, fighting for an MRI. My pleas fell on deaf ears.
Then, in January '09 I convinced a plastic surgeon in Soroka to refer me for an MRI. I had to convince him that my pain warrants further diagnostic testing.
MRI done in Jan '09. Original evaluation lost.
I actually received the rewritten evaluation in February '09.
That is the first time we hear of some synovial tumor/mass in my hip joint.
Again, my GP said "it's nothing".
Again, I make phone calls and try to make sense of all this. Meanwhile, my pain, and pain medication, was increasing.
Prof. Giladi says to go to Professor Gur, plastic surgeon in Ichilov for an opinion.
Prof. Gur didn't know what he is looking at, and sent me back to Giladi for further consultation.
Giladi suggested I go see Dr, Halperin, the expert orthopedist, for another opinion.
Halperin didn't know what he was looking at. He sent me back to Ichilov to Prof. Flusser, an expert radiologist.
I don't remember why I didn't get to Flusser directly, but Prof. Giladi then sent me to Meller.
Meller didn't have any appointments available, so Prof. Giladi said to go to Bikels.
March 9th, '09, I got to Bikels' office with all my tests and consults in hand, and he was perplexed how I got to him, and how he could possibly help me.
He said he'll consult with his colleagues (Radiologist Dr. Flusser, Giladi and Meller), and if anyone has anything to say, he'd get back to me. If not, not.
He got back to me the next morning, Purim, '09 (March 10th, an entire year from the Cellulitis hospitalization).
Ordered a CT with contrast and a biopsy of the tumor. Also requested that all my medical care get transferred to Ichilov hospital.
I needed paperwork from my GP for the CT & Biopsy.
Again, he said "they want to biopsy that little thing?"
Biopsy done May 20th.
May 26th, Biopsy report of PVNS.
My GP never heard of PVNS.
Go see Udi Raht in Soroka, expert in hip arthroscopy.
Then lots of feet dragging. What do we do with this girl? Everything is problematic.
I changed GP's. The new one is familiar with PVNS.
Finally, surgery scheduled for the end of July (remember the diagnosis was in May).
Then changed to August 5th.
Then canceled due to the fact that my oncologist did not explain my case to my surgeon.
Changed oncologist to Meller.
Updated MRI scheduled for September 8th.
New surgery date September 14th.

Isn't life just so interesting?
It's all in Gd's time line, not ours.

2 comments :

  1. This is a great sum-up for a not-so-great story!

    I knew all the parts, but seeing it like this... well, I just want to shout: SUE the GP!!!

    OK, who has time or energy for something like that???

    I am so sorry you are going through all this!!

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  2. I am having surgery for pvns in my hip on Sept. 25th. This is my first surgery for this. Fortunately, mine was diagnosed in August. I only had to wait a month for surgery. I could not imagine the pain you went through for so long. I hope your surgery went well. If you are up to it, I would love to hear how you are feeling. Arthroscopic or open surgery? My surgery is outpatient so I go home the same day. Any suggestions of what to have on hand when you get home after surgery?

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