TIPNA

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

Hi - can anyone tell me if they've had any experience with dr. Goldstein or heard anything about him.? I've heard of him from a tipna friend who hasn't seen him herself but has heard good things about him.

As per some of these 'experts' he doesn't take insurance and if you are on Medicare you need to sign a waiver ahead of time that you will not file a claim with Medicare. Not sure how regular insurance works except that you have to file everything yourself.

My big concern is that I was told that the first visit is typically $1,300 and visits after that are usually around $200. I don't really have this kind of money to throw around but would gladly find it if I thought he could be of any help in giving me some of my life back.

According to the person who schedules his appts., you first have a consultation with him, then an examination, and than a concluding consult, at which time you will be given a diagnosis. After 6 + years, I am a little skeptical. Okay, make that a LOT skeptical!

Another concern is that I don't know if mentally I can take another disappointing dr. visit. I'm feeling rather low at the moment with one thing after another cropping up besides the PN problem. It just doesn't seem to end and I sometimes feel that there is really no answer for me because my history is too complicated.

My PN issues started in the middle of a serious stomach problem over six years ago when I lost 50 lbs. pretty quickly. This PN horror started during that time period and I have no idea what one had to do with the other. Nor does any dr. that I've seen.

Sorry for the long post. Just another night when I 'm awake when I don't want to be and have too much time to think about everything.

I would really appreciate any input on Dr. Goldstein by tomorrow if anyone knows anything about him, and especially by anyone who has seen him.

If I don't cancel my appt. tomorrow, I will be charged $250 as they want a two day notice and my appt. is Tuesday. I know I should have written this sooner - it's been a busy week with dr. appts. and p.t. appts. everyday, plus worries re. my parents who are in a nursing home and have many problems of their own that need looked after. I feel as if I wouldn't have a life at all if not for dr. appts. Sad

Wishing everyone an answer and some help from this awful problem.

Fran Sad

_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Celeste · Joined: 23 Mar 2004 Posts: 2523

I read pudendal nerve pain blogs, and people either like Dr. Goldstein or they don't. The people who like him think he's very thorough and wants to help, the ones who don't like him think he's arrogant and pushing them around. I think he does a lot of non-surgical things for various vaginal/pelvic pain issues, from what I gathered. I found the blogs by googling "pudendal nerve pain blog". There are only about 6 of them right now.

I would lean towards keeping the appointment because I recall your history and know you don't have much in the way of providers locally. While the fees sound high, they're not astronomical and maybe this could get you some degree of relief. Hang in there!
_________________
PNE from childbirth, 5/2002. Left side PNLMT 5.2, left side TG surgery 6/30/04, Houston.
Thickened SS and ST ligaments were grown together, encasing the nerve.

I'm cured. I hope you will be, too.

GregT · Joined: 23 Mar 2004 Posts: 4156 Location: Pineville, LA

Didn't Goldstein move to California (S.F.) for some time? I'd thought that he used to work in Boston, then moved to S.F.

Any truth to this?

Also, I'd heard that he'll only work on you if you specifically have a sexual dysfunction.
_________________
Had PN surgery in France in Dec, 2001. Sitting is a bit better, but I still have muscular pain in much of the pelvic area. Never had pain on one side or the other, just in the middle.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

Thank you, thank you, Celeste for answering my email so quickly. I'll go on and try to find those pudendal nerve pain blogs today. I've had this on my mind all week. I haven't seen anyone for the p.n. issues since 2008 as there simply is no one around here that knows, or seems to care, about pudendal issues. Of course this is not news to anyone on this forum.

And at some point you just feel like you're wasting your time after being disappointed time after time with seeing drs. who feign interest on the first visit and don't even remember you on the next one, or why you're there.

Thanks for sticking around the forum to help us all.

Greg - Dr. Goldstein does have offices in Annapolis, MD and New York City but I dont know anything about CA. And yes, he does treat and specialize in sexual dysfunction but I don't know if he gives preference to that. I hope not.

Anyway if I go I will post my experience here to help others.

Thanks again to you both.

Fran

P.S. Anyone else out there who has any information on Dr. Goldstein?
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Celeste · Joined: 23 Mar 2004 Posts: 2523

Here is the link in particular that had the most to say about this doctor:

http://downtherevaginalpain.blogspot.com/2010/02/dr-andrew-goldstein.html?zx=62a0b661e029f89e

Please let us know how it goes! I will be thinking of you.
_________________
PNE from childbirth, 5/2002. Left side PNLMT 5.2, left side TG surgery 6/30/04, Houston.
Thickened SS and ST ligaments were grown together, encasing the nerve.

I'm cured. I hope you will be, too.

TinyDancer · Joined: 19 Jun 2010 Posts: 47 Location: Virginia

Fran,
I was interested in Dr. Goldstein, too. The idea that there was someone in D.C. was fabulous because I live in N. Virginia. Is there anyone in D.C. that treats PN? There has to be...it's the nation's capitol.

One day I sat on the phone trying to find a neurologist. Along with other Drs., I called every hospital in the area that treated PN. Nobody. I know there are a lot of specialist in hospitals because my daughter is a doctor at Duke. I tried in N. Carolina, found one attached to a hospital and she really had no idea about treatment.

Again, does anyone know of a PN doc in D.C.
Kate
_________________
PN following childbirth 1968
trigger point injections 2005,2007
diagnosed w/PN Dr. Marvel 2010
3 nerve blocks
MRN,MRI
physical therapy
appointment w/ Dr. Hibner Sept.29,2010

Celeste · Joined: 23 Mar 2004 Posts: 2523

She says he's in Annapolis MD, not DC itself. Hopefully that's not too bad considering you are in No.VA. Might be worth a try if it's not too much of a drive.
_________________
PNE from childbirth, 5/2002. Left side PNLMT 5.2, left side TG surgery 6/30/04, Houston.
Thickened SS and ST ligaments were grown together, encasing the nerve.

I'm cured. I hope you will be, too.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

Celeste - I did google pudendal nerve pain blog but wasn't able to find any mention of Dr. Goldstein. Not sure why.

Fran
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

My last post might have been misleading. I meant to say that Goldstein ALSO has offices in Annapolis and New York, as well as Washington, D.C. in case anyone in that area is looking for someone to go to.

Fran
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Celeste · Joined: 23 Mar 2004 Posts: 2523

Celeste · Joined: 23 Mar 2004 Posts: 2523

Fran, I don't know if you looked back in that blog's archives for the author's trip report on actually seeing Dr. Goldstein, but here it is in case you wanted some information on what to expect.

http://downtherevaginalpain.blogspot.com/2010/04/big-appointment.html
_________________
PNE from childbirth, 5/2002. Left side PNLMT 5.2, left side TG surgery 6/30/04, Houston.
Thickened SS and ST ligaments were grown together, encasing the nerve.

I'm cured. I hope you will be, too.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

Wow Celeste - that was so informative. I'm not the most literate person on the computer so I would never have found it. I did see her refer to it somewhere but couldn't find it.

Well I definitely won't be taking my daughter into the examination room after reading that. That would be TMI for anyone, other than your husband. So it's good to have a heads up on the exam

I can't thank you enough for all your help. Wish I were more computer savvy - I get by okay but not much more than emails and a little googling.

Hugs galore
Fran
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

Well I've had my visit with Dr. Goldstein and I apologize for taking so long to get on here. Got back last Friday and have had appts. all week and getting ready for my husband's hip replacement next Tuesday.

I found Dr. Goldstein to be very nice personally. My daughter was with me so that helped. We had a consult first, and then the exam. No camera was used which I was grateful for. He basically did an internal exam, looking for the pudendal nerve and found it. It did hurt with pressure but not off the wall or unbearable at all. Also did the Qtip first all over the inner thighs and outer vaginal area which didn't produce any pain.

He didn't exam my groin area or the pubic area which is where I have a lot of discomfort -pain in groin) and spasms - pubic bone).

After this he determined that I did indeed have a pudendal problem and suggested a pudendal nerve block using lidocaine, marcaine, and a steroid. If it worked I was to get some numbness within a half an hour (I didn't) and can't say I really noticed any difference, except for a slight shift in some of my pain in the buttock (maybe a little closer to the pudendal nerve itself now). But I'm not even sure about this. The block was done without CT scan using his finger to pinpoint the nerve. Not fun but I've had worse done to me.

If the block worked then I would be going back for more but since it didn't the next thing he wants me to do is to travel to New York City to have a new MRI done which can actually visualize the pudendal nerve. Have since found out it is a 3T MRI. It's done at the Hospital for Special Surgery by Dr. Hollis Potter.

He also wants me to have an MRI of the hip done at the same time as his thinking is that sometimes the pain that seems to be PN related is actually coming from a labral tear in the hip. Now I don't have any hip pain so not sure about this but if I go to the trouble of going to N.Y.C. I will have it done since I'm there anyway. He said that a therapist in New York sent 49 patients with PN symptoms for this MRI and 47 of them had a labral tear.

As far as meds, he only offered 10 mg. supp. of Valium (which so far does't seem to be doing much of anything) and wants me to start on Neurontin at 100 mg. and work my way up gradually to 3 a day. He knows my history of having problems with lots of meds but even so said I will have to basically suck it up (my words, not his) and take the meds until I work thru the side effects. My daughter has been telling me this all along but it's easier said than done.

As for my daughter she did go in with me for the exam, just looked the other way when he was doing it. I was glad to have her with me as she took a lot of notes and was able to ask him some questions herself.

Celeste has helped me find some information on this dr. and MRI in New York and I have found some info with the help of two others on the pudendal.info site.

Hopefully I will be able to make this trip in September when my husband is recovered, depending on the length of time it takes to get an appt. It will mean standing on a train 4 or 5 hours each way but it's the only option so it will have to do.

If anyone has any other questions, please feel free to write on here or p.m. me and I'll try to help out any way I can.

As far as my opinion of Dr. Goldstein he couldn't have been nicer to me, even hugged me when the last consult was over. But I know the proof is in the pudding.

I won't see him again until I have the MRI's done and if I don't maybe he won't see me at all. I don't know.

I'm sorry this post is so long - just trying to remember everything and be helpful to others.

We're in this together.

Fran
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

I forgot to say that the visit cost me $1,413 total. That included the block.

(I tried to edit my first message but couldn't find a way to do it like I used to. Isn't this feature available anymore, does anyone know?)

Fran
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.

Fran · Joined: 06 Jul 2004 Posts: 397 Location: PA

I just looked at my two posts from last night and see that the 'edit' option is available now. When I wanted to add something to my post last night, it wasn't. Only the "quote" option. Maybe you have to wait a few minutes now before you can edit?

Fran
_________________
Had first and second sets of blocks in Houston Aug. and Sept. 2004. Have had several rounds of pelvic floor therapy, but only one actually helped. Had Botox Aug. of '07 with mixed results and again in Nov. 08. Not being treated by anyone currently.