First I saw Dr. Gur, the plastic surgeon. I had some important questions for him regarding the reconstruction surgery, and his secretary called to tell me he can see me at 1:00. My appointment with Prof Bikels was at 1:30, and with the train arrival, I got there just in time to see Dr. Gur first. I got to ask all my questions, and I am very satisfied with the answers. He is such a mensh (person of integrity). Now I know a lot more about the reconstruction surgery, and am much more comfortable with it. I will go into that in another post.
Then I went to Prof Bikels (orthopedic oncologist), and learned that the reconstruction surgery has to go on a way back burner. For better or for worse. Everything in it's own time, right?
So, here's the scoop on the tumor: The good news is that it has nothing to do with cancer at all, and poses no threat to my life now or in the future. Very good news, indeed.
Bad news: It does pose a threat to my hip. It also is the cause of my pain. It is a type of sinovial mass called "PVNS"- Pigmented Villonodular Synovitis. Say *that* 10 times fast.
PVNS is, of course, a rare occurance, and can go undetected for a long time because it is so rare. Annual incidence of PVNS is estimated at 2 cases per million population; this is me here, the walking statistic. This type of tumor slowly disintegrates the cartlige around the joint, leaving a very damaged, unuseable hip. Not to mention the pain. This is from Wikipedia: "PVNS is locally aggressive and can spread to surrounding tissues, causing bone erosion and tissue damage. If not treated early, it can spread to areas outside the joint. The disorder also has, on average, a 45% rate of recurrence." (Huh?? Recurrence?!! What!!!?) I'll leave it to you to read the rest of the article. There is also an article about it on "Pub Med". Look around here: http://www.ncbi.nlm.nih.gov/sites/entrez
Prof. Bikels said that it has to be removed. If not, aside from causing me much more pain as time goes on, it's likely I'd need a total hip replacement in a few years. This type of mass, although benign, is really serious. It cannot be simply drained. It has to be surgically removed. Bikels said that he's going to consult with two orthopedists he knows to figure out if the surgery will be arthoscopic, or all-out big scale surgery. Arthoscopic is like laproscopic, but orthopedic. It is less invasive than going right into the hip joint by cutting into it. Bikels said that he is doubtful about orthoscopy in my case because of all the scar tissue from the NF, but he isn't sure. He promised to get back to me with a definite answer in 2-3 weeks. He took digital photos of my whole Gapey area in order to be able to study it and figure out how to take this mass out.
He also talked about involving Prof. Giladi (ID) with regard to the necessary antibiotics for the surgery, and how to cover me from infection.
He was 100% sure that this has absolutely *nothing* to do with having had NF. He said that people get this without having had any injuries or trauma, and there are people who limp heavily their whole lives who never get this. It is rare, and not a result of infections. I'm trying to convince myself he's right, but how can it be? Totally not connected??! It's the SAME PLACE! What are the chances? (I gotta stop saying that, don't I).
[One thing that occurred to me tonight after I got home, is that I wonder if there is any connection with the original hernia surgery when the surgeon took out the lipoma as well. It was a mass in the same spot, and he took it out. Could there be some connection? I'll have to ask that.]
Dr. Bikels talked about the fact that this surgery involves a long rehabilitation. Physical therapy is extremely important to try to lessen the risk of the PVNS returning, and to lessen the risk of arthritis at a young age. Can you really believe this all? I am still digesting. This thing is serious. Oh, yeah, and, it is entwined in my scar tissue around my hip from the NF. Man, what am I going to do? Why is my body completely failing me?!
Prof Bikels was confident that after all is said and done, my hip pain and thigh swelling will go away. Hard to believe, isn't it.
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My ear still bothers me, and I am not emotionally able to deal with it. My family doctor wants to do a head CT to see if there is an inner ear infection. I c a n' t. Too much.
Davening is humbly appreciated.
Sarah Rachel Bat Tova.
Sarah,
ReplyDeleteMay this be a major step forward in your recovery!
I think that you may well be on to something by linking this condition with the original hernia. And given that the Wikipedia site claimed that the cause for this condition is unknown, it seems that there is plenty of room for educated speculation. Are you thinking that this may be a recurrence, and that the original tissue was removed during the hernia operation?
Praying for your improved health,
Larry
Hi Sarah,
ReplyDeleteI understand what you are going through as I too am going through a tumor/cancer of ovary, after NF in the area of my NF. Funny huh, my Dr's also say it is not in any way connected, to that I say Phewee, I don't believe them. I had no problems before and I am only 37. I know you feel that you body is betraying you,esspesially after NF, it's not, it's just we are destined to be interesting people!!! lol
My question for you to put to the specialist is: if this thing has a high percentage of coming back after surgery, would a total hip replacement now rather than later prevent this? Or would it still grow around the new hip?
Know you are still in my thoughts and prayers,
Joanne, Aust.
hi Sare,
ReplyDeleteI've been reading you all along, don't feel lonely!
You are always in my thoughts and prayers.
I have the same question as Joanne... can't you do a complete hip replacement now, and how would that affect chances of reoccurence.
I also don't believe the doctors... that whole area of your body is wacky from the NF (think of the nerve responses you had!) This is just a connected reaction to all that trauma. Maybe they don't say so in the Western medical books, but I'm curious what Eastern medicine experts would say.
It must be a relief to finally have some specific answers and solutions.
The psychological relief... that will come.
XOX LOL
Devorah B., New Joisey
Wow! Lots going on lately. Sounds like the whole family is reacting to the stress. Remember, you are a good mom. I'm so glad to hear that they have a reason for the pain you've been in. I pray for peace for you in this process and for skilled hands to put you back in shape again.
ReplyDeleteGlad you have an answer - hope you can find the right path back to Sarah... xx
ReplyDeleteHoney -
ReplyDeleteI am speechless. What I am thinking the whole time is:"What were the chances of us ending up with Bikkels?". I mean, it seemed like the most random of appointments. And he MADE THE DIAGNOSIS! Sorry for screaming, but that is pretty impressive. And there comes the speechless part. I mean, what kind of thing can you say when you get a diagnosis like this? Thank G-d I know what it is? Or: Darn, why me again? So I am giving you a hug, that's what I know I am good at. We'll speak when the time is right. Please know you're in my thoughts.
Rivka