Amazing Person that happens to be a Dr.
 

Hi everyone, I wanted to tell you about my appointment with the VERY BEST PM/NEUROLOGIST I have ever met!! He is here in FL, but I had to travel 70 miles to see him (which is a lot of hard miles for me) but I would have traveled ANYWHERE to have met him. Faith in humanity, specifically PM Doctors, restored!! Let me tell you my experience. The staff was nice enough checking in. I was called back and greeted by a medical student (nooooooooo) who would first be doing an examination on me......(nooooooooo. I've been to that party many times before and it wasn't pretty.) She carried on, asking questions, COMPLETELY unfamiliar with RSD. I felt terrible already from the long drive, and her "exam" was becoming so painful I felt like throwing up. She took tons of notes and said she was going to go talk to the Dr. and return with him. To my amazement and delight in walks the MOST (BY FAR) compassionate Doctor I've EVER met!! He took one look at me and with the tenderest of eyes introduced himself, and began to ask me questions that NO Dr. has ever asked, and he REALLY listened to my responses! Then he began teaching the student and I both with such kindness (impressive.) He pulled out an expo marker and began to circle parts of the body on a large dry erase board with a front and back picture of the body printed on it. Without any boastfulness he said, Dr. Schwartzman, who is a renowned RSD specialist, was my boss for several years. I was trained by him, then looking at the student he said, "you never want to touch a patient that has RSD. You want the patient to call the shots on their comfort level of you touching them in anyway. It's like if you have an itchy foot, you could scratch it and get relief, but if someone else scratched your foot it would most likely tickle. With an RSD patient, your touching them could send their pain through the roof." Ahhhhh I seriously thought there was an angel in the room. He said to the student, "I'm going to show you some things to look for with RSD patients, and then he began asking me questions. 110% agreeing with my answers, and explaining my complete diagnosis to both the student and I. He said, "she has total body RSD. That means out of 3 levels of RSD, she is level 3, and this is why." He began pointing out all the reasons without touching me. I was in complete shock at his understanding of this disease. The student in there turned out to be a huge blessing because the Dr. was breaking things down for both of us really. Then we went onto medicines starting by him asking me what I felt ever worked or didn't (wow, so much interaction was blowing my mind.) He than started writing a huge list of medicines and procedures and why they would or would not work for me (mainly why they would not. He did that very compassionately) Then he opened the floor for me to express my concerns. One of which was severe eye pain, vision loss, and forgetting words, people, and sometimes even how to talk. He actually got a little emotional and said, "Your RSD has spread to your face, I can see it. I can also look at your eyes and know it has spread there. We can't stop this process now that it has left your central nervous system, we can just try our best to make you feel comfortable." Then with even more compassion he said, "the other symptoms you described tells me it has begun to affect your brain. I am so sorry. Again, this is our objective, to try to make you as comfortable as possible." After an hour and a half visit with him. (Not including the student time.) We came up with a treatment plan that I felt comfortable with. He bid me farewell by sticking two fingers out and said "I would like to shake your hand, but you only do what you can comfortably." I actually started to cry and said, "you could never understand the blessing this appointment with you has been." He then just smiled very humbly and warmly. I was in my wheelchair leaving, and he asked if he could assist me in any way. He said, "I want to see you in a month, but at my closer office. I will walk up to the front desk and tell them to fit you in my schedule there so you don't have to travel as far." He did just that. I left with my husband, and I was just in tears. Tears because the possibility of completely losing my vision and forgetting my sweetheart and young children (which has already happened a few times this week) terrifies me, but honestly there were many more tears of gratitude to have found such a compassionate soul. I will be following this Dr. wherever he goes :)

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Still smiling,

Your post gladdens my heart. I hope this doctor is the one who will help you.

Wow, so very happy that you have found such a great doctor to treat you. I can tell by the tone of your post that you are beyond overjoyed.

The fact that he was trained by Dr. Schwartzman speaks volumes to his experience level with CRPS.

Wishing you the very BEST moving forward with your treatment plan. Keep us all posted!

Stillsmiling,

I am so happy you found a healer who is interested and truly cares. That makes such a difference. Doctors of that caliber are hard to find but they are out there and Wow! What a difference having that level of compassion in your provider. He has seen beyond your illness to the beautiful person suffering underneath it. What a special man.

I am sorry that there is less he can do for you due the progression. I know that must have been heartbreaking. Still sometimes it is good knowing honestly what you have to deal with and face. So good that he is willing to be on your team and work to keep you comfortable.

I am sending extra hugs today. I know that was stressful on many Levels but it sure sounds like it was worth it.
:hug::hug::hug:

It is so nice to hear good news on these forums.

I am thrilled for you that you found this gem of a doctor.

It is great to know that docs like him still exist.
Thanks for sharing your good news.

This is indeed wonderful news to our ears and especially you! :hug::grouphug:

Stillsmiling,

Overjoyed for your success. It gives me hope that good MD's do exist. Persistence seems to be key. Wish I could come to Florida.

Saddened by the assessment of your CRPS and the pain you are going through. At least now maybe someone compassionate and knowledgeable will provide the best care possible given what we know about this disease. All the best to you and yours. Warmest of thoughts, mac

Healing Interactions
 

Hi Stillsmiling,

Your mood indicators says you are "Happy!" :D
I am very happy for you! :hug:

Thanks so much for sharing your experience with us.
It's uplifting to the whole community to know you have felt understood, have been treated well, and have some renewed hope.

Littlepaw had mentioned the term "healer." I feel the same way. We often meet people in the medical profession. We feel very blessed when one (or more) are "healers" or "healing in nature."

In Celebration,
:hug:
DejaVu

I am so happy that you have found a doctor with such a wonderful combination of being a great doctor and person as well.

That makes all the difference in the world.

I am so blessed to also have such a wonderful , knowledgeable , kind, and caring PM doctor too .

I appreciate having him so very much . I thank him every chance I get.

Thank you guys so much for all of your well wishes and encouraging words. I am so grateful for all of the support and understanding I receive from ALL of you! Huge group hug :)

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i am so happy you found such a compassionate dr who also understands rsd. they are hard to find but they are out there. you just have to keep looking and not give up. i am sorry though that the rsd has spread to your face. my rsd has also spread to my face. it has affected my eyes a little with on and off blurry vision and caused me to have ringing in my right ear (tinnitus) which is annoying. i also get sores on my scalp and in my mouth that take forever to heal. the worst part for me in my face though is my teeth. i have had five pulled since rsd because of infections i keep getting because of my weakened immune system due to rsd. i still have more teeth that need to be pulled but am having a hard enough time eating as it is. i am sorry your eyes are so affected by rsd. my eye dr said that could happen but don't give up hope that it will go into remission. and at least you have a dr who is willing to make you more comfortable. i hope that your eyes get better and that your rsd does go into remission. sending soft hugs your way.

Dear Stillsmiling,

What a beautiful post. It was so well written, I felt like I was in the room with you, the doc, and the student.

I could feel the compassion.

So happy for you that you have found such a physician to walk this journey with you with understanding.

Wishing you the best and so thankful for your post.

Ok, after such accolades, i have to ask...what's the doctor's name and where is he located in florida? It may very well be worth the travel to see someone so well versed in crps. I hate hate hate paying for doctor visits and testing and medications and lets see how well you do with this injection or some physical therapy only to end up where i started from but more frustrated for the aggravation. All because doctors dont know much about this problem. Really seriously i would love to see the doctor you went to.

Hi happygirlpa, his name is Dr. YiLi Zhou. He is the head Dr. at the Florida Pain and Rehabilitation Center. I traveled to his Ocala office. He has an office in Lake City that is almost 50 miles closer to me but is only there once a month. He also has an office in Lady Lake Florida (further South) and I don't know his schedule at that location. From my understanding his home office is in Ocala FL. The way I found out about him was I was looking and praying for just a normal family GP. I found one that I heard was very knowledgeable in my small town (Dr. Mimi Balch.) I went in really just to have a consult and establish her as my new GP. I told her I had full body RSD, I am in chronic pain, I am so done with my neurologist, I didn't have a PM Dr., and frankly I was so tired of the same old experience. She said, "Would you mind trying one more Dr.? I know an excellent one." I said a little prayer in my heart, had a great feeling, said yes, and she walked out of my room and called right then and there to make the referral. She called the Lake City office and I heard her more than once say, "no....I only want her to see Dr. Zhou." Dr. Balch walked back into the room and said, "they should be calling you within a couple days to set up an appointment." After a week and a half they hadn't, so I called the LC office and the girl said, "I'm sorry Dr. Zhou is only seeing nuero patients right now." Then she got back on and said, "Actually he's only seeing PM patients right now." Aye aye aye. Finally she made me an appointment that was over a month away, and at the end of the phone call she suggested I contact the Ocala office for a closer date. I did call the Ocala office and they were much more pleasant and professional and within no time they had an appointment set for me to see him 2 days later. Take away- It sounds like you need a Dr. to really press to get Dr. Zhou, and also don't waste your time calling the Lake City office. Call the Ocala office! He really is unlike ANY Dr. I have ever met. I went to the Mayo clinic in Jacksonville for 9 months. I had a GP there along with 8 specialists!! I saw soooooooo many Doctors after that just desperate to find anyone that actually understood RSD. Dr. Zhou really is a GEM. I had reached the point of being willing to go ANYWHERE to find a good Doctor. He is excellent, and personally I will absolutely be traveling anywhere he goes (I wasn't kidding) if he moves. When you walk in His office there is a glass case of all the books and articles in books he has written. He knows his profession better than anyone I know, and yet he is the most humble and compassionate Dr. I've met. Google Florida Pain and Rehabilitation Center. There you can see all the services offered at the center. Also look him up under Staff. His credentials are impressive, but obviously will not include his bedside manner which is by far the best I've ever seen with any Dr. Good luck, and best wishes!! Let me know!

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Dear Stillsmiling,

I am so glad to hear that you were persistent in your attempts to see this particular doctor. Can you imagine what you would have missed if you had allowed that first road block to stop you in your tracks. With many patients, they may have just given up and never had the opportunity to find such a wonderful doctor.

I have said for many years that doctors need to be sure their first line, (the staff patients encounter long before they ever meet the doctor), is a welcoming and friendly staff. A bad receptionist, nurse, medical assistant, whatever, can kill a great doctor's practice.

Sometimes even good doctors are given up by some patients when getting through all the other staff becomes too much hassle to endure.

Maybe someone should alert the physician of how the "front office" treats callers at some of the facilities.

I always make a point of telling my docs of what a good job their staff does if that is the case and how they impact the docs practice. I should be as forthcoming when it comes to BAD staff but usually don't unless it is really horrific.

A bad "front line" can kill a doctor's practice.

Thank you so much! We all need a happy story and yours gives me hope.
Besides for praying for a cure....I pray to find a compassionate doctor who finds my "story" interesting.

Stillsmiling----thank you, thank you, thank you!!! Here's a big hug from me to you! I sure do appreciate the info. I will be calling his office to see about an appointment after i consult my florida map to where these offices are in relation to my friends home in little bitty crescent city (near palatka) . Thanks so much! Xoxo

Please keep me posted!!

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