Thank you for this. It gives me a little hope in this difficult time. Naturally I am in California and I had all my medical needs and surgeries at Stanford. Then I turned 18 and they disappeared. They cannot help me with my pain and basically refused to see me as a patient because I believe that they really and truly didn’t know how to help and this is Stanford University. So, I appreciate you and thank you for doing this video. I am going to have to get in touch with Weinberg Center and see what they have to say about my situation. It is not surprising that the SOLE place that helps adults with C.P. is across the country due to the fact that my entire life seems to be in an active state of Murphy’s Law. Lol. Many Blessings AK
Hi AJ, we are sorry to hear about your experience. You deserve to have access to care as an adult. We can see patients via telehealth as a possibility. Please call our office at 212-305-2700 if you would like more information.
We live in California near UCSF, Stanford, and UC Davis as well as the ability to be seen at UCLA. My daughter is 41, ambulatory, cognitively unaffected, and has suffered from excruciating leg/calf muscle spasms for years with our proper treatment from Any of these medical centers. She stopped working, stopped walking on campus, etc. due to the spasm pain. I do not know how much more of this situation she can bear. She talks of suicide as the only answer. Baclofen, Botox, muscle relaxers, valium , braces, PT, have all been tried and failed. She STILL does not know if she is a candidate for any kind of surgery. Traveling to Weinberg is our only last hope ....we have heard excellent things about Dr. Paulo Selber. As soon as my daughter can arrange a safe time to visit, we will make the trip. A teleconference is in order. She has a fairly recent gait analysis completed at Stanford. Please let us know if there is any way my daughter can speak to Cara or any other CP PATIENT for support?
Hi Janet, thank you for reaching out. We are sorry to hear about the pain your daughter is in. Telehealth is a great first step, we also have a mental health specialist on staff that works with our CP patients and caregivers. For more information please contact us at cpcenter@cumc.columbia.edu.
Thank you for this. It gives me a little hope in this difficult time. Naturally I am in California and I had all my medical needs and surgeries at Stanford. Then I turned 18 and they disappeared. They cannot help me with my pain and basically refused to see me as a patient because I believe that they really and truly didn’t know how to help and this is Stanford University. So, I appreciate you and thank you for doing this video. I am going to have to get in touch with Weinberg Center and see what they have to say about my situation. It is not surprising that the SOLE place that helps adults with C.P. is across the country due to the fact that my entire life seems to be in an active state of Murphy’s Law. Lol.
Many Blessings
AK
Hi AJ, we are sorry to hear about your experience. You deserve to have access to care as an adult. We can see patients via telehealth as a possibility. Please call our office at 212-305-2700 if you would like more information.
We live in California near UCSF, Stanford, and UC Davis as well as the ability to be seen at UCLA. My daughter is 41, ambulatory, cognitively unaffected, and has suffered from excruciating leg/calf muscle spasms for years with our proper treatment from Any of these medical centers. She stopped working, stopped walking on campus, etc. due to the spasm pain. I do not know how much more of this situation she can bear. She talks of suicide as the only answer. Baclofen, Botox, muscle relaxers, valium , braces, PT, have all been tried and failed. She STILL does not know if she is a candidate for any kind of surgery. Traveling to Weinberg is our only last hope ....we have heard excellent things about Dr. Paulo Selber. As soon as my daughter can arrange a safe time to visit, we will make the trip. A teleconference is in order. She has a fairly recent gait analysis completed at Stanford. Please let us know if there is any way my daughter can speak to Cara or any other CP PATIENT for support?
Hi Janet, thank you for reaching out. We are sorry to hear about the pain your daughter is in. Telehealth is a great first step, we also have a mental health specialist on staff that works with our CP patients and caregivers. For more information please contact us at cpcenter@cumc.columbia.edu.