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

Hey GnP

That sucks - but at least the dr told you straight.

I really hope ketamine can help you - I know that even though I take it in lower oral doses (up to 100mg a day) it has helped abit. Well, it has definetly helped more than the MST/ Oxycontin/ Fentanyl/ Methadone combos that I was on pre-ketamine, (and it has controlled my pain to an extent where I can study).

I hope you can get in sooner! and that it really helps you. The deep bone pain is HORRIBLE isn't it!?? 50% is great!! as you say, any reduction is going to be good!

Love ya

Froggsy xxxxxxxxxx

I truly don't think that any of us in this situation have anything to lose by taking a risk to get better .
Worse case scenario -I have a bad reaction to the ketamine and I am sick for a while - well I have been very sick before and I am one strong mf and I know I can get through anything -not always happily and not always by choice but I get through it.
And,I always come out a stronger more evolved human being on the other side whether I like it or not.
The last 8 years of my life have certainly taught me that.
How could I possibly pass up the possibility of getting better?
That is a chance I am willing to take for anything.
I will run , jump ,be airlifted ,sky dive whatever it takes to get to that golden egg.

Thanks all

GnP

PS .Sandel I was taking ALA daily at 600 mgs for a while but I have been lax of late .Thanks for the very important reminder!!!!!!

The PM team have a drug (can't remember the name) that reverses the effects of ketamine if you have a bad reaction to it. That's why it's started in hospital... so there isn't that large a risk!

Love ya

Froggsy xxxxxxxxxxxxxx

I wasn't talking about having a bad reaction to the ketamine but thanks for your concern:)
They do give you neuroprotective agents - a fancy name for ativan or clonazepan or diazepan to countereffect the hallucinogenic properties in the ketamine
I have heard and read about people having adverse reactions at the injection site - a specific concern to RSD patients especially those with extreme sensitivity issues, after all ,you are being infused continuously for 5 days, which is a lot for anyone .Not everyone tolerates this type of treatment well.
It is not successful for everyone but I won't know if it will work for me unless I try it .
I am actually warming to the idea of the coma treatment in Germany - if I could only convince my family.:rolleyes:

GnP

central line? I had one for a while because my RSD is a right idiot when it comes to getting veins!

If you have the coma I'll pop over and say Hi! Are your family against it then?

Love ya

Froggsy xxxxxxx

Hi GNP My gosh.. 6 mos. is wayyyyyyyyyy too long to wait!! I feel so bad for you GNP! sending {{{{Big but gentle hugs your way, swetie}}} Love ya bunches, Desi :0)

Actually I thought my family would have a hard time with the whole Germany - put me in a coma thing but I was wrong.

Once I made the decision for myself -that I did not a) want to wait 6 months to a year and b) more importantly - that I did not want to go through a semi coma - half a**ed procedure with an only 50 % reduction of symptoms if it works altogether when I can go to Germany and be treated once and have the potential to be cured -it became a more realistic no brainer non- decision .

And my family is in agreement .They don't want me to be treated over and over again and go through countless needles and procedures when this could be it .I might as well start with a bang rather than a whimper .

I am ready - I called Dr.S's office and I am ready to put the plan into action.

Ok I sound like Xena warrior princess but inside I am scared sh*tless.
I can only imagine what it will feel like to say goodbye to my family before they put me under .Talk about emotional overdrive !!!!!!!!!
But until then I will live one day at a time .
I know I am doing the right thing and that will keep me going .
Now is the time for peaceful reflection, meditation and being as good to myself as possible:)

will keep u all posted

GnP

PS I think I may be a little to out of it to entertain visitors;)

GREAT NEWS I wish we all could do that to come up with the cash to go to Germany, sorry I do not want to argue I wish you luck and wish you well! in fact I hope it works! I care for you my fellow RSD friend just I live in the shadows now I wish we all could go there for help! we all could get a grant and get help! I will pray for you, at least you have been touched by a angle and might leave this hell we are in....

and now for the bad news..... (bad dum dum )

Germany only offers this treatment to 2 patients a month .The waiting list is longer than for Dr.S's treatment in Philadelphia .
I wonder why he was trying to convince me to do it this way when I have to wait so long to get any relief.
Who knows what could happen to me between now and then with this odd, mysterious, burning, gut wrenching , gnawing , tender,incessant ,insidious , bone aching ,prickly , creepy ,mind blowing , never a dull moment condition .

things that make me go mmmmm

GnP

GRRRRRRRR!!!

I so wanted to say Hi!!! :D grrr!!

ring Germany and BEG!!

Love ya

Froggsy xxxxxx

I wanted to post some good news !!!!!!!
searching everywhere for thread :D

I went to see my PM doc today .He was not impressed with my downward spiral.
He is fitting me in for a SGB on my worst limb my left arm next Tuesday to be followed by a ketamine booster ( 4 hour ketamine IV @20 mg/hr).
I am then to follow an at home oral ketamine protocol for 12 days.

I have done this protocol before .
It is certainly not a cure but what we (I) are hoping for is to calm down this out of control flare and to settle down the condition my condition is in - and not a moment too soon - every day - every minute a new symptom from my private home entertainment center!!!!

Next stop ...Germany ( ya right like nothing will happen for a whole year:rolleyes:)


GnP

WOO GnP I am really excited for you! I hope the infusion is ok!! 20mg an hour could be abit rough!?! :eek: :hug: but if it helps it's worth it! lol What home protocol will you be on?

I really hope the flare starts to reduce - there is nothing worse than flares that go out of control!!! When is it?

Loads of love

Frogga

PS See you in Germany!! xxxxxxxxxxxx

Thanks for your support sista xena ;)

I am scheduled for all this in 6 days!!!! I have done this exact protocol before.
When you have the booster after an SGB you kind of sleep through the whole thing. It is the same amount of ketamine - same protocol as per Schwartzman boosters .
That is how I know that I can get my aftercare post Germany here whatever that may be. Some people need none ;some find they need a couple of additional boosters to complete the process .
They are not too bad though I have never had one on their own without having been knocked out in advance for a block or something to that effect.

will keep u in the loop :)

to Germany !!!!!!!!!

excited and scared like cr@p at the same time.
I cannot watch one more video about the experience (but I will :confused: ).
The days AFTER the ketamine coma are over are supposed to be the worst !!!
Horrible hallucinations - not knowing who you are -who your family is what reality is:eek: ....but then it all begins to make sense without the pain if all goes well- and it will:) ,


Peace

GnP

Yo warrior Kadiaya

Sounds great that your dr is so great:D I am so excited for you!!!! Can you let me know what oral regime you are on?

Sounds totally amazing! I am so excited for you!

Germany does sound pretty scary, I wish I could have it but it is so expensive there is no way I could have it done! However, I must say that I have found ketamine really really useful and so I'm sure that the infusions and the coma should help you! woohoo!

how do you find the infusions? I might ask my PM about it

I am currently looking into a ketamine pump - my dr is considering it....... so fingers crossed!!

Loads of love and best of luck!!!

love ya

xena xxxxxxxxx

Hello there,

I just thought I could add some light on Ketamine from someone who has been having it for 9 years and shares the experience with at least half a dozen people having it at the same time.
This is the inpatient Ketamine Infusion I am talking about, I have at least 4 a year and have then from 5 days and up to 4 weeks at one time.
I have very widespread CRPS with other major medical problems also.
My experience has never been negative with the side effects being mild and short lived as the infusion should be titrated hourly to the right level just for you. As soon as you feel a bit strange it is turned down and the symptoms disappear almost immediately. Ketamine is not stored in the body which is why it has been used for years in Anaesthetics for children.
When I have been in with other patients we are all on VERY different doses, what is right for one is too much for another.
I prefer to have a dose that keeps me quite lucid yet others choose to spend their time sleeping it off----it is all just an individual preference.
The IV SITE should be changed every couple of days to prevent infection but if finding veins is a problem then you can have Ketamine given via a subcutaneous needle in the skin of the belly or like me , have a central line put in. The skin can get a bit red and inflammed but the site also gets changed frequently to avoid this.
I can honestly say that in all the years I have been attending my hospital and the hundreds of people I have seen having Ketamine , I have never seen anyone have major side effects that stop them having ketamine again. It can cause some upset of liver function but that also resolves very quickly once the infusion finishes.
I understand that it is a very personal decision but I just wanted to recount my experiences to perhaps show a positive side to the infusions.
There are many reasons why I wouldn't have coma therapy but mostly they pertain to my other medical problems and seeing that Ketamine in the short term awake treatment is so readily available for me here, I have not had to consider it.
I wish luck to anyone who is contemplating this treatment and feel so awful for you that the waiting list is soooo long there:(
Happy to answer any other questions
love Tayla:hug:

Hey Tayla,

Wow, sounds great! I wish they did the infusion therapies here! that is so cool! I'm glad it is so widely available.

It's weird - I also know no one with who has had major side effects - yet every one is always scared of using it! bizzare!!

Love

Frogga xxxxxx

Hey Tayla

Wow - that is some story .You are one strong and brave women!!!!
You were doing this kind of treatment before we had even heard of it- before any of us probably had RSD!!!
That is a whole lot of ketamine.And that is precisely why I want to go to Germany.
MY case so far is in my upper extremities and my feet and ankles .I am mobile and I would like too stay that way -
Despite the pain I exercise and I have been told that that is one of the best ways to stay mobile and healthy(whatever that means ) .I didn't know I was doing the best RSD treatment around, but it just made sense to me.Keeping the blood and oxygen flowing to my limbs and things can only help not hinder my progress so I am going to keep on keeping on .
As I said to a relative I would rather have a 50 % at a cure than a 50 % chance at a 50 % chance -that is how I see the difference between the two in patient ketamine treatments.I am willing to take that risk as I do not want to spend my life as it is ,in the hospital having repeated treatment and boosters.
I know it may not be the big bang I am hoping for but it has been proven to be a bigger bang- the brain is in a steady holding pattern and in order to reboot it's hard drive it needs a massive dose to get its attention.
I am really happy that these repeated treatments are working for you but I don't at this time see my life that way.I also cannot afford to see my life that way:D
It may be that a paradigm shift needs to take place .
Wherever you are it sounds as though ketamine infusions are in much the same league as diabetic insulin infusions .
Now wouldn't that be nice!!!!!!!!!
We could all just go to the hospital for our necessary infusions to manage our condition, and that would be that !
If that were the case my decision may be different, but I can't make a decision based on maybe's.

Peace

GnP

Tayla 4 me, GNP and others - aching or burning pain
 

Just wondering - re: your pain. Is it more aching or burning or both? Mine seems to be more aching in nature but often becomes burning when it is really severe. Sometimes my whole body feels burning. However, I have a constant back ache,(entire back) soles of feet(burning and aching) and knee pain, burning neuropathic mouth pain and now TMJ. It is a combo of RSD and fibro. I am now disabled due to back pain and multiple other problems.
I am on the waiting list for the IV Ketamine in patient but I am concerned because they say the ketamine is mostly helpful for burning pain and won't even address the fibro issue. Also, concerned about the access line as I have no veins and have real issues with invasive techniques.
Would others please respond as to the nature of their pain - buring, aching . both.
Thanks,
Best wishes
Sydney