a side trip to Philly;denial over and what Dr. S said
 

I finally decided ,after going back and forth for the 10 day period that I knew of my appointment with Dr. S, that I would go.
This was on the Friday before my Monday appointment at 9:00 AM :eek:
Needless to say the logistics of arranging a plane ticket from California at 2 PM on Friday the 8th , and hotel accommodations in the last minute like that were far from easy .
I left on Sunday at about noon LA time , arrived at 9 PM Philly time, went to sleep in the hotel -woke up and went to my appointment.
I had filled out about 20 pages of back round health information etc before I arrived which I handed in at my arrival to Drexel University.
The appointment itself lasted about 4 hours carried out by various medical staff.
An intern took a very thorough 1 1/2 hour neurological exam
Then came the scene from "Grey's Anatomy.".
Dr.S came into the room with a crew of 10 - 12 interns and residents.
He examined me and asked them all questions.
He asked me some as well:)

At one point he scratched the side of my finger with a pin and he asked me on which side of the finger I felt the pin prick more
He asked again.
He said "Aren't you listening"
I said 'Oh, I was waiting for the residents to answer the question.Aren't they supposed to learn anything"
That got a good laugh

At the end of the exam he looked me in the eyes and said that my case was much too severe for the 10 day out patient ketamine protocol.
I needed to have the inpatient wide awake coma treatment with the 5 day hospital stay .And if he had his way he would convince me to go to Germany and be induced into a coma for the more intense treatment .(I declined)
He told me that I would get about a 50% reduction in my RSD symptoms
Unfortunately he could not help me with the rest of my health issues:D

So that nice warm mushy area of denial that I happily lived in as my case was not as bad as the worst I have ever seen or heard of is WAY over.
I even had some days - OK not that many any more ,where I could convince myself that I just had some really bad neuropathy's :confused: :D
The mind is a really powerful tool .It is amazing what we can convince ourselves of if we really try hard enough- and I did!!!!

There is a 6 month to one year waiting list for the wide awake KETAMINE treatment
I will keep you all posted


GnP

'

Hugs, sorry your bubble has popped.

Although fatherly
 

Although Dr S is so paternal he says it like it is. One way it is a huge weight to give credibility to the pain and in another too much to accept how ill one is.

LOL, i remember taking my daughter and the psych docs were on rotation, at least he got them to see the symptoms are not in your head.

I pray for a great outcome and the highest amount of reduction.
Dianne

I'm really sorry about your news from the Doctor. At least you heard it from somebody you know is the expert ... I admire how brave you were to fly across the country, have all the tests done, and to listen to him.

GnP
 

I had the 5 day awake ketamine tx in NYC at the Hospital for SPecial SUrgery- Dr Richman- The hospital and Dr were great and he works closely with Dr S. I am sure his wait is not as long-may be worth a call-

I hope everything gets sorted out for you!! I am sure this all is worrying and hard on you, and I hope you get peace and strength to deal with it all.

Sending many gentle hugs xxxxxxxxxxx :hug:

Thanks for all the replies :)
Deb thanks for the tip but after all my deliberations on whether to see Dr. S or not I think I am going to stick with him.
I have seen enough doctors over the years.I do not want to add a new one to the mix. I am sure you can all relate- especially considering the amount of travel involved.
I also want this time to mentally, physically and spiritually prepare myself for what my body has to go through - it sure ain't purty:wink:
I discussed with Carol (the chick who runs the show) having my PM doc here, who does some version of the outpatient protocol to do my follow up boosters.
That would certainly eliminate a good portion of the follow -up travel .
i would then have the last follow up session in Philly so that Dr.S could assess the condition my condition is in.
I certainly hope that both these docs can put their egos aside and agree to work together on this type of "protocol"
It is dependent on both of them agreeing that this could work otherwise after the initial 5 day treatment I will have to go to Philadelphia every 2 weeks consecutively and then for a final treatment one week after that.

I have been spreading with needless abandom of late.I fear I may become full body soon enough so this treatment is coming at just the right time.
I am far to young, strong determined , athletic- (i still go to the gym with rsd in my feet and crawling up my legs !!!!) to have it get any worse .I am far too pretty and intelligent , and useful to society as a whole for any of this.
I say all of this without an ounce of vanity.
WE ALL ARE!!!! We are a team if survivors !
So I am going to grab this opportunity by the gonads and run with it !!!!!!!!!


GnP

Dear GnP -

I think you are doing absolutely the right thing. Please give my regards to Carol.

Mike

Thanks again
I know in my heart I am doing the right thing, the only problem right now is that with my recent rapid progression I don't think I can wait that long!!!!!!
After 8 years of what I think is an average case with some spread ( due to early intervention and my philosophy of always moving) I mostly experienced RSD with intermittent pain.I now think I have moved on to the next stage of constant 24/7 never ending gnawing burning chewing agonizing pain with more spread too.
My right eye is a Horners eye all the time .Good thing it looks sort of like a quirk rather than a sickness -HA ha ha.I am not really laughing.
My energy is way down. My hands don't last long -writing here is about it for my them for several hours.
I am also experiencing more deep bone ache and I am not sure where all this will lead and how fast.
I see my PM doc here on Tuesday and I am willing to be blocked ,IV'ed or anything else in the meantime to slowdown what has been happening to me in the last 2 to several months.
I am on a downward spiral I want off of in a very big way, and 6 months to a year is too long to wait .

I hope you all are fairing better

GnP

you go gurl!
 

Wow Hello.. I had been wondering how you were doing GNP, I am so sory for the spread but I am glad you made that decision, it would not be good your wondering if it could have helped you if you didn't. And 50% is huge when you are talking the kind of pain you have.

I wish I had that opportunity and I am so proud of you for making it, now for the wait... are you taking grape seed extract? I would it does help keep some of the symptoms of spread from the new areas I find.. either that or it is disacociated spread that is happening to me. I also drink alot of white tea have since my spread started and my spread areas are not near as bad as the origional area of RSD and are short some symptoms. yay! I still have intermitent pain with deeep bone ache everywhere randomly. My doc says "generalized spread"

Hugs bud soft ones, you will do well and remember 50% is HUGE, please keep us informed I am very interested in this treatment and in your progress, I see no hope for me here in Canada for that yeat. I am so happy for you :hug: and proud that you found the strenght to do this.

Sandra