Well hello everyone,
I have researched so much and am so frustrated but I had talked with this new doctor at least three times today and she is willing to see Brooke tomorrow a.m. and next week... She is going to even come in on the 4th to treat her due to her pain and movements.. Well she has been in horrible/excruciating pain for the last four nights/days and I can't stand by not doing anything... I am at wits end and ready to explode... Go to www.google.com and look up Dr. Constance Haber. She is in PA and in Monroeville.. Not far away and she said she has had 85 percent sucess and works with a Brain Surgeon.. She also said she has some in remission to present 7 years.. Every treatment basically is non invasive and that is great for all of you who knows with RSD the pain of invasive causes.. I will let all you know what and how things go tomorrow and I even told her I love our doctor in South Carolina but if I could get someone closer to help treat her especially when she is like this to travel so far, she couldn't.. She was very understanding etc.. I just hope and pray something good happens and maybe a firm diagnosis...
God Bless each of you...
Betsy

P.S.
She even has had patients that where on SSI and turned there cards back in and went back to work... Isn't that the first..?? I haven't heard any of that from anyone I have talked to and believe me there has been numerous to many to count..

Also, at present time , It is free treatment because she is waiting on the FDA to approve this for her... We all know how much thermagrams are at least I paid 1000.00 for Brookes.. This one is more detailed than the older.. All I can say is look into her sites and I hope she can help Brooke or anyone else suffering day to day.. God Bless

It looks like she comes up on the google results quite a lot.

I like that most of the tx are non invasive- I sure hope she has one that works for your daughter.
Just be sure your daughter speaks up if she feels anything might be making her feel worse.

Hey Betsey,

Huge hugs to you and Brooke. I hope she is feeling better soon. This doctor sounds really lovely!! I really, really hope she can help Brooke!

Also the travelling being less will be brill!

I do agree with Jo though, that Brooke should speak up if she feels the treatment is making her worse...

Why is Brooke having another thermography? Admittedly they are very pretty, but still, all the drs I've seen say that the thermography showed I have RSD so it's not worth repeating it (though was funny watching the XRay peoples face when they were performing it as they tried to set a contrast which worked!)

Best of luck!!

Love

Frogga xxxxx

Hello everyone,
Thanks for the replies... I am just updating you all on her visit today.. She was excellent.. Brooke was hurting so bad that she was having alot of dystonic movements and the Dr. automatically put her into a room, changed the temperature to her desires, put her onto a heated water type bed and had soothing music , images on the wall to relax her with a nurse to sit while we talked over her last few years.. Then they did the thermagram.. A reply to Frogga's question is that she does her thermagram to have pictures throughout her treatment and care , and saves them, while doing the photon therapy ,which she did today minimal treatment to see if she responds, she watches the thermagram to see if the temperature is changing.. It did do some changing in her hands and feet today.. But we have to go mon, tues, thur,fri,next week.. She compares the images and will be able to see how her body is going to respond to the therapy.. Brooke did well throughout it all for as much pain she was and is in.. The DR was wonderful as to making sure Brooke was comfortable etc.. Brooke was unable to open her hand bilaterally today and she was like thats fine, your doin great we will take what you can give us.. I sure hope and pray this may help.. I am not getting my hopes up though.. The doctor also works with a cardiologist, endocrinologist, and other medical on her team/group with getting firm diagnosis...
Betsy

Betsy,
Have you seen this site yet?
http://www.rsdcanada.org/parc/englis...py/photon.html
HTH!!
Sending prayers and love for your daughter!!

Betsy.... RE: Dr. Constance Haber --hope she & team are THE answer & help your daughter. Please--keep us updated.

hope your daughter will be "success" story- this Dr's rate of recovery & improvement impressive.
Do understand that it's too early to get hopes up but present scenario sounds very hopefull.

Thanks for sharing-- after linking to her website & reading about Alternative Pain Management @ http://www.ampmcenter.com/photon_photonic.html

I intend to contact; local center seems better option than to continue muddling thru SOS of facilities like UPMC--not saying UPM is not good--they are, have excellent DRs but my experiences there have been....frustrating. Also would be great to access non-invasive treatments, or even non-drug therapy that most Drs focus on, to treat symptoms.


Thanks to all for info on these non-invasive treatments, like Photon Therapy

well this is fascinating information. i truly hope this works for you. i would love to try it. joan

I was hoping to hear more about Betsy & daughter's experience w/ Dr. Haber & photon therapy.

I did contact AMPM center & qualified for their research program for RSD.


I wrote a long post yesterday about my experiences w/ Dr. Haber & her patent Photonic Stimulator, but Lost trying to Post due computer problems.

I'm just returning from appt, & rather tired now. So will try to recompose later, to share & update on this interesting alternative treatment.

Blessings...