Anyone seeing a Boston Urologist for Xiaflex

[Rjljr]

Boston has many leading hospitals and I've found a list which identifies the top Urologists. First, I'd like to see if anyone in the Forum is currently seeing one for Xiaflex injections. If so, who is the Dr. And please share your experience.

RJ

[edzo67]

my uro was involved in the trials. im not sure if he is currently administering it to his patients. Im not a good candidate for them. Dr. William Connors @ Mens Health Boston

[james1947]

edzo67

My question is off topic, but why you are not a good candidate for Xiaflex?

James

[edzo67]

I was told that my plaque had calcified. im not totally convinced of that though. the affected area has seemed to grow recently even though my sexual relations have been reduced to almost nothing. my bend has gone from about a 30 degree downward to a slight upward. which would seem like good news ,but its continuing to increase its upward trend. also seem to have lost another 3/8 of an inch in length. I feel like a little boy. depression is rearing up again. I feel undesirable to my wife even though she does try once and a while to approach me for relations. I can see her disappointment during sex. I almost feel like telling her to find a boyfriend to satisfy her. its creating more distance... sorry a little off track

[james1947]

I feel undesirable to my wife.... its creating more distance...

Edzo, you are not alone in that. I am also there.
Regarding Xiaflex, try to see an other doctor. Maybe your plaques are not calcified?
Maybe you should think about an other treatment?
I know we are off topic, so let's go back to Rjljr first post.
The answers are at:
Thread for Guys in Xiaflex Trial - Currently or Previously - Peyronies Society Forums
& other topics on this board.
People are posting on the relevant topics, so don't wait for answers directly to you Rjljr.

James

[mylesd]

I was seen by a Dr  in Boston in Feb for my condition. He told me that he was extremely interested in obtaining Xiaflex and I would be a good candidate for this.
He said that he wanted to make sure Ins would cover the procedure and that he was trained to administer it. I haven't heard back from his office. He didn't prescribe any alternative treatment because I don't think he believes there is any that can be effective. Since I don't think Ins covers this for Peyronies Disease ( correct me if I'm wrong), I'm still waiting.
I respect this Dr and am wondering if there are any others in Boston that are using it.

[bummedout]

Edzo67,

Stay strong.....I've been there, and to some degree I'm still there.  I was 28 when things started with this disease, and I'm 34 now.  You have to find motivation everyday and keep hope alive.  Good luck edzo.

Bummed

[edzo67]

thanks for the support guys. I have to dig down deep for another dose of strength. last couple months have really affected me bad. if I wasn't self employed ? I would be fired. gonna struggle paying my bills this month if I don't get my head outta my ass pronto. iwould like to try the Prp shot first before I ask for xialflex. The thought of Xialflex scares me right now. As I said in other posts My Dr. (William Connors) was involved in the trials and I get the idea that hes not sold on it at this point.Uros that deal with our condition are not easy to come by. Knowing that my guy has a background in research of Peyronies makes me comfortable enough to stay put right now as my first Uro was totally unfamiliar and had the wait and see policy. So, if my Dr. isn't going to push Xiaflex right now? im fine with that. Im sure he would do it if I insisted but I would like to see more positive data compiled before I pull the trigger.

[james1947]

Positive data can find here:
Thread for Guys in Xiaflex Trial - Currently or Previously - Peyronies Society Forums
10 pages, so it is really for someone that want to know.

James  

[afocusedforce]

I went to see Ricardo M Munarriz, MD; he is so bad that I considered filing charges against him for his unprofessional behavior & treatment; condescending and rude..pure & simple. I now fly to CA to receive treatment and its worth the money to do so.

[PMRT]

Go to Dr. Connors.  Men's Health, Brookline, MA.  He was one of the original in the trial phase. I am using him. He is fantastic and I have had great results so far.  I was the second person in MA to begin Xia Flex.  

[casey57]

I am seeing a different doctor, but in the same MHB practice in Brookline (Dr. Kacker). I had hoped to see Dr. Morgentaler, but he only sees people who join his boutique practice.
I was there today for an ultrasound, which showed I am a candidate for xiaflex. I was then supposed to get a shot that gives me an erection, and then have a doppler ultrasound by Kevin the nurse. The shot didn't work that great, so he couldn't do it. It caused an ache that lasted more than an hour. Not looking forward to more shots if they all cause that type of lasting pain. I may end up just trying to live with this, even though it is pretty bad.

[james1947]

casey57

Your negative experience should not deter you from taking care of your Peyronies!!!
Don't end up just trying to live with this because it may worsen without treatment!!!

James

[davideric]

Go to Dr. Connors.  Men's Health, Brookline, MA.  He was one of the original in the trial phase. I am using him. He is fantastic and I have had great results so far.  I was the second person in MA to begin Xia Flex.

Pmrt

Can you update any further progress with dr Connors .....am considering using him
Thks  

[Ben T Dick]

I saw a top urologist for incontinence for a few years and various trials. bipolar and on much lithium, drinking a gallon
a day. on Thanksgiving I was diagnosed with diabetes and gained control of carbs and glucose, cut litium dose in half. Uro claimed he diagnosed Diabetes last may and told my  two primaries by marking "glucose +1" on visit report nobody saw. meanwhile, he did a urodynamic test, straightoutta the Spanish inquisition, said I had overactive bladder, and new pills.

in february, the base of my male member fails to harden with the rest. I want to sue Uro for malpractice, not go back! but is it a result of getting diabetes controlled, 60 lbs lost, or scar tissue from the catheter I didn't need?

Ben T. Dick