Need some Guidance
 

Hello Everyone, I am a new member and have learned a lot reading posts these last few months. I would now like to ask for your advise. My daughter has CRPS She was diagnosed in Feb 2010. We have been to the Rehabilitation Institute of Chicago for 10 weeks (twice a week for 1/2 days). When we started she had it in her left knee and while in re-hab for 4 weeks it spread to her lower leg, ankle, and foot. After it spread they suggested we do a Nerve Block, the 1st lasted 11 days and two weeks later the 2nd lasted 9 days. Both times the pain came back full force. RIC will only do 3 N.B in a 6 month period and her PM Doc does not want to do another one. I am surprised because they worked will for her. She now is in PT 3 times a week somewhere else, doing PT (Tens), Hydro and OT. All seem to be making her pain and CRPS symptoms worse, but I keep telling myself she needs this. Her PM Doctor at RIC does not want to do another nerve block or give her different pain meds, suggests she keep doing what she is doing - feels summer/friends are the best meds/biofeedback/PT/suck it up attitude. She can walk for short periods of time and is on Lyrica, Trazadone, Metanx and was taking Tramadol but didn't like the side effects and felt it was not helping, so has wend herself off of it. When we brought this up to the doc, he does not want to give her anything else. Her pain levels are at a 10 sometimes and I wish she would have dif. alternatives. We saw a Neurologist and she put her on clonidine at bedtime, which she hasn't been taking for long but is starting to have sleep problems. The Neurologist just didn't seem to want to get involved. I'm just not sure where to go from here, I need some guidance. Can anyone recommend another doctor who knows RSD that I can get a second opinion in the Chicagoland area. I'm trying to find someone who will listen and maybe try some other treatments. She hasn't had CRPS for long and from what I read now is a critical time. Doc does not agree with me and says I'm to anxious. I am looking into the 3 week program at Children’s Hospital in Boston, MA and thinking of Oxygen Therapy. Also my daughter does not have pain in the back of her knee, her calf or her toes, is this normal for CRPS. If anyone has any suggestions I would greatly appreciate it.

Hello Rachel
 

And welcome! I'm so very glad you've found this wonderful forum, because there are so many wonderful people here who know EXACTLY what you are talking about!
You will get GOOD feedback here at NT :grouphug:

It appears your doctors are not very familiar with this condition and/or they simply don't want to commit to delving into it.
But please don't lose hope!! There ARE doctors out there who specialize in this field, and your daughter can get the proper treatment options that are available.....

Although I'm not familiar with the Chicago area, I'm sure there will be someone who will come along to give you more detailed information.
Just please stay strong in this. Don't let ANYone make you feel this condition is 'in your head' or that you have to 'deal with it'....!!

My heart goes out to you and your daughter. It's a terrible thing to see our child suffer......please stay determined....you WILL get the help she needs.

Truly Caring
Rae
:hug:

Dear Mom of Rachel....
 

Welcome to our family of caring wise RSD friends.... I want to say RUN and do not look back..To me, it seems you have much more understanding, knowledge and patients than your daughter's doctor..you are corest in that this is a very cruticial time, early onset of her disease.. Especially if she is getting results from the blocks..DON'T STOP!! My PM Dr. did 4/5 doing them every other week... but my pain level did not change..so keep going..Please, find a new Dr....cut your strings today...possibly a neurologists, pain managment or anesitologist (sp)...they seem to have better knowledge than others..I can't not offer suggestions on Dr.'s from your area as I live in nY but I am sure our friends here will help you with that..In the mean time, bide your time..you are on the right track..gather a game plan for a new Dr... continue to educate yourself...go forward..you have/are doing great in helping your daughter.. Don't stop until she receives a knowlegdeable caring Dr. she rightfully deserves..And please don't use ice..only warm bath..

Let us know how you are both doing..You are a wonderful Mom!

Soft hugs, Kathy:grouphug:

Hi I am sorry for your daughter struggles. I think I recall this girl I am in contact with going to Rush hospital for rsd care.I could be wrong though. Is this the same as where your daughter went? Though I did not have the best care there the same girl who I think went to Rush did go to Cleveland Clinic and saw the same doctor I did Stanton Hicks. Ohio is not that far so that was my other thought for you. Truly though my best pain doctor was one I found through a teaching hospital by calling the anestesolgist pain center and explaining what was going on. I feel better then my care at Cleveland Clinic,UCLA,a specialist I saw on tv about rsd etc. I hope your daughter gets relief soon.

Your best bet
 

While it is a bit of a travel for you I implore you to contact the office of Dr. David Sherry of Childrens Hospital of Philadelphia. Dr. Sherrys program is without question the top of the RSD treatments for youth. I started with my RSD at the age of 13. The way I understand your daughter is younger so you will have no problem since shes younger then 19 to get in. He is a excellent specialist and one of the top RSD specialist in the United States currently. His program has even gained the attention of specialists from Germany, Japan, etc. These specialist have come over and studied his program and then returned to there country to set up programs like his. He is your best bet. Understand there will be a waiting list, but I can assure you its more then worth the time! I hope the best for your daughter and for yourself. Most likely your daughter will go through his treatment and like most others I have seen go 3 weeks or less and be completely put into remission and never even have to return. You will not find a better pediatric RSD specialist. Best of luck!

~Lord Wood

It's nice to see you back Lord Wood.:)
sandy

Thank you for your input...I have read some of your resent posts and I do hope you are in a better place. I will look into this clinic, I know you think the would of Dr. Sherry and I am so sorry they couldn't help you the last time you were there. Thank you for your kind and hopeful words for my daughter.

Hello Daniella
No we have not gone to Rush, RIC is the only program my daughter has gone too. We are now in the process of getting an appointment with Northwestern for a second opinion. When you say best pain doctor at a teaching hospital do you mean Rush? Thank you for your response

There is another great program at the Cleveland Clinic Childrens Rehab hospital...
http://my.clevelandclinic.org/childr...ain-rehab.aspx here is the link...it is a lot easier to get into this than Dr. Sherry's program. My daughter did this program and I highly recommend it.

Any questions feel free to pm me.

Sandy

Hi No I did not mean Rush as the teaching hospital. I meant a major hospital in your area that may be a teaching hospital because from what I read here they are more up to date on treatments. Of course you would not have the student but the doctor who deals with RSD. I did the pain program well part of it at Cleveland Clinic and saw 2 pain docs there and have mixed feelings but like I said the girl I know had good results. I was also going to try to do hbot but then decided to wait. My thought for the teaching hospital was just because I saw so many doctors for ex one I saw on Discovery channel who helped this lady with rsd so I went to see him to be let down. The one at the teaching hospital I found really spent time,took my concerns into account,looked outside the box and spent time where as like at CC it was very rushed and there was not a lot of options. Again I am not saying you should not go to CC since like sandy said her d had a good experience just my thoughts. Hang in there.