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I am home... Dr.S is AMAZING!!!!!!!!
Just got home a bit ago from Philly.. over 600 miles in two days..we are all pretty tired and very happy to be home...I had to write....
Dr. Schwartzman is AMAZING!!!! He is just an incredibly knowledgeable..world renown Neurologist..I am now honored to be one of his patients... Sadly I want to share with you that I did not get favorable results...He has diagnosised me with "whole body" RSD and some internal organ involvement... it's the news we didn't want to get..but I am okay..I am not scared and still feel very blessed... We have to fight for the insurance company to come on board in order to proceed which he recommends a 5 day inpatient coma ..sadly, I will have to remain at Drexel in the ICU unit for some time...it's a bunch to digest .. you are all aware of this feeling I am sure... still coming down from all of this ....it may take a little time to sink in...RSD is a !!! I have to try and get to sleep shortly... I just want to say how much I appreciate your support and that I think the world of each of you!!!! Love, Kathy:grouphug::grouphug::grouphug: Kathy |
Glad you're home safe and sound.....wish it was with better news, but at least you have a great doc fighting for you now. Best of luck with the ketamine coma.
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best wishes to you,I pray that you get the relief you are after,,,
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Hi Kathy,
You must be quite exhausted after your trip and the ordeal of traveling but your optimism still shines through.. I am so sorry to hear of your diagnosis...from what i recall you weren't taking many meds, and you umust have been in much pain to be full body with organ involvement...You are amazing to endure as you have... How did Dr. S diagnose full body and organ involvement? Was it by clinical history or a test of some kind? Would out patient ketamin treatments be of any help and relief? Take lots time to rest from your trip Many hugs, Hope4thebest :hug: |
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So nice to wake up to read your posts... thank you!!! H4TB... you are exactly right in that I can't withstand meds..it has been solo//cold turkey..I laugh at my self in that I must be stupid or made of steele... Iam so glad you asked the ? of how Dr. S diagnosised my whole body/organ diagnosis...that is the amazing part of this, among meeting him of course...One of his students came in and id my detailed history..(which our sauvy letter was a hit).. history took probably an hr. Soon after in came Dr. S with at least 15 med students... he asked me a few questions but the rest of the time he spent looking around and examining areas including the veins in my hands, neck face ..drew a line on my chest.. asked me a few questions about how I feel my RSD started... combed over one area to the next..easy part for me..so he didn't do any testing just purley examined me... he is so smart!!!talked the whole time dictating my troubles and asking the students questions as in what does this mean... when he was done he kidded with me in that we need to get some cash cuz I need the juice.. he feels 5 day sleep which has to done there ..I would benefit a good chance of pain relief for possible 5 yrs. not more than 10...including boosters to cover pain as it presents it self....His final statement, after I asked him my questions was ..addressing myself and students was..we have a 47 yr. old woman here who is not feeling very well are you?..I replied no sir... No worries.. things will always work out the way they are meant to..In the mean time..I gotz you all here...It was my pleasure to meet such a nice man and intellegent Dr. Hugz to you all.... my family! Kathy:grouphug: |
welcome back home..Glad to hear your back safe. I am so rry for your diagnioses. I really hope the insurance company don't give you a big hassle. It is always good to find a dr that understand what your going through...
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Hi. Ok I am sorry if I am confused but you are going to do the coma in Germany or Mexico? I thought no ones insurance covered that since it is not approved in the US? Have you ever had ketamine infusion? If not why did he not want to try that first? Sorry for so many ?'s. I hope things work out for you and it gives you much deserve relief.
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Wow!
Speechless Kathy!
God BLESS you is all that can roll off my tongue at the moment... You are indeed strong. I'm so glad you've got top-of-the-line doctor on your side. PLUS, 15 students!! By that, I realize how much you are contributing to furthering RSD research. Keep reminding yourself of that ok! You are at the top of my prayer list..... :hug: You've always been here for everyone....... Truly Caring Rae :Heart: |
Hi Kathy,
Well, you just made my day! I am so happy you finally were able to see Dr. S. He is indeed a wonderful and intelligent man. He is also quite funny too. I get a kick out of him...and his posse. Having at least 8 other doctors in the room while he is examining you is basically the norm for him. I am happy to have the more the merrier since they will learn the correct way about RSD and how we feel then go into the field and hopefully soon by him doing this will have many doctors onboard about the facts of RSD and we will never have to be treated as we all have been in the past from other doctors. I am awaiting the inpatient ketamine infusion too. I have to wait for a judge (for my 3rd visit) to see one for approval. It is a mess with workers comp. It would be pretty neat if we could meet there and have our infusions done at the same time!!! I would be glad to meet you. I have had full body and have it internally too so I feel your pain for sure. I am glad you got your answers and now can fight for your right to be treated and with dignity. You go girl. Take care and get some rest after your long trip. I know it wore you out. I only go about 25-30 miles each way to see him and I am worn out for days so I could imagine how 600 miles would feel. Best of luck, kathy d |
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Thank you for this..you are so nice in sharing your prayers with me and giving me the confidence that yes..I can go forward... it was a remarkable day yesterday... One I will not soon forget..even tho the outcome was not optimable..I made some new friends... I'll keep reminding myself..promise..I still am okay..Promise you my friend...that I am always there fro you too and our family here..always..however I can help!! Love, K:hug: |
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Great to read your post.. made your day...sweet.. and tell me would that not be the coolest..To be roomies..you watch over me..I would be happy to take care of you... Ya know..crazier things have happened, I am sure..I too would love to meet you also..Like we could pick up right from here..I find it neat thinking we were in the same office.. I am a bit apprehensive..maybe cuz it is still real new for me to digest but..my mind is on overload..but with the internal diagnosis..like Dr. S said..you need the juice..Did he say it that way to you also?? How long has it been since he told you?? I am really sorry for your diagnosis, my friend.. I understand from here that WC is such a bear..I say we double team WC then swing back and give my ins. a round or two..What do you say?? Yes, I am dragging today... but it was so worth every penny..and we saw the Rocky steps... pssst. I wasn't least bit interested in climbing em!! I'd still be there.. My friend..we must update eachother on visits..one never knows..I will be the one with the decorative cane..you can't miss me... Hugz for you...:hug: Kathy |
Kathy, Glad your trip worked out and you made it home safely. He must have made such an impression on you. You are amazing. When I was told i had generalized CRPS and needed the ketamine coma I cried the whole way home. Even though i knew it spread and wanted an expert to confirm it i guess i just didnt want to face it. It seems your Dr visit was a much better experience than mine (I didnt see Dr. S). Curious, did Dr. S say when they started doing ketamine coma at Drexel? I was told the only place to get the ketamine coma was in Mexico (use to be Germany & Mexico). When I asked how long relief would last with a coma I was told everyone reacts differently and there was no way to tell how well it would work. Did Dr. S give you any statistics about coma outcomes? or website? This gives me more hope-I would consider the coma if it was in the US rather than out of the country.
Thanks for giving us your update and sharing your info. momof4 |
My new buddy!!!
Hi Buddy Kathy,
I would love to watch over you too...and give both our ins cos the one-two-punch (or maybe the one-two-hit with a cane). It would be comforting knowing one of my buddies would be with me in the same boat. Last year around March, Dr. S took one look at me and told me I was so bad I needed to go to Germany or Mexico. I told him to wait a moment since I don't have the money to do that and I would like to try the ketamine treatment here first before doing somethign so drastic. He agreed but I am STILL waiting for approval from workers comp ins. I have been waiting over three years now but will not give up the fight. About those Rocky steps...when I was younger before the RSD came to visit me I never even had a desire to climb all those steps. There are to many for me. The downtown area of Philly is really beautiful because the buildings are really neat to look at. It is nice to see it but it is nice to get out of the city and see some green grass and trees! My canes aren't decorative but I want to paint them purple since that is my favorite color and I want to put spinners on my wheelchair. My son...well he just laughs at me. Have a good night and I hope you recover quickly from your big visit. kathy d:hug: Quote:
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So nice to read your post and thanks for that... Yes, we can feel more hopeful as the Ketaine coma-the moderate level is being done there in Philly.. I want to be sure and answer your questions..Dr. S gave me a 50/50 for possibly of relief of 5 years... not sure how long they have been doing it in Philly .. Outside the US is the high dose experiental treatment..here in the uS is the moderate dose, my course of treatment and the 10 day out patient treatment..wow so much to absorb in one visit.. I felt good now knowing where I stood with my RSD..my heart and emotions were satisfied.. I didn't cry, I hardly never do that for some reason I have ice water running in my veins... Iam either made of steele or I am stupid..I just looked at it as well now I know and lets see how things play out...either way... life is still going to be wonderful.. I will see to it..so the rest of the day we treated as a mini-vacation for our kids (13 & 16) and my hubby...saw Rockys steps.. dinner with my in laws and drove home..I felt a bit overwhelmed by the information and my results but at the same time..I was over the top with appreciation in meeting Dr.S...so smart and just what we need for our Dr...he is the RSD king...I wish I had taped my consult... we have hope..honey..just we need to have our ins. carriers to realize our desperations.... we always have hope...never give up..okay?! I send you a very nice day wrapped up in a neat package stamped..Pain free please... Hugz momma...Kathy:hug: |
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It has got to be in the name!!! First and very first.. I gotz to get you a purple cane..decorative..padded handle to boot..I gotz around 8 of thoses puppies laying around..different colors to match each outfit....a must..we'll get you just the right shade of purple..baby..you will be steppin!! My overwhelming feeling is that we ALL need these ins. carriers to take us serous... what the.. why do we have to suffer cuz they don't feel our pain?? One would think..having the support of the best Dr.'s in the land ..they would believe if not us then them that we need help..NOW!!! That is crudola..waiting for over year for approval..someones needs to be spoken to on that one.... So what time ya comin by for dinner??? I'll have the coffee on.. heck bring our entire family here over..we'll solve all of this once and for all!! Hugz my buddy...Kathy P.S I am glad you are my buddy!!!:hug: |
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