Hi,

Their was a lovely young lady from B/T 1. She had RSD but at the Cleveland Clinic their discernment was wrong. The Doc made the wrong call and did not help her. She is in heaven today. Hugs, Roz

Roz,
I am so sorry to hear this news. Was her name Jo on bt1? Why are you asking for forgiveness? Did she commit suicide?

If so, she is one of several who I've met on the forums who have chosen to give up hope. Sometimes the pain is so great that some people think there will never be anything better for them. It is very hard for the rest of us to relate to that way of thinking but I wonder if sometimes death is a better alternative than living in such severe agony.

Please don't feel guilty. There is nothing you can do if another person has made up their mind to end it. You can try and try but if the decision is made there's nothing.

I am so sorry for the loss.

One of the reason's why I continue to post here is to show people that no matter what doctors say about rsd never being cured, sometimes, miracles do happen and people do get better. If I can give someone that glimmer of hope they need to stay alive and fight for their life, then I will be satisfied that my yrs of pain will be worth it somehow.

NEVER GIVE UP HOPE - You can get better. If I did- you can too!

Peace,
Lisa

No, her name was Andi, username AndiButterfly; I'm confused too, Roz......
all the best

Hi Jo & Artist,

I am sorry I did not respond sooner. I have had a couple rough weeks. I just got back from my MD's office and am getting treated for cellulitis is my eyes. I just had it a while ago so I am back on 3 antibiotics like I was before.

At least my eye nightmare will start to feel better. Hugs, Roz

Hi ROZ,
Could you please tell me what happened to Andi--I was at CLEVELEND CLINIC last summer in fact "twice" left in tears "twice" had a quick conversation
48 hrs. after I LEFT THE NEUROLOGIST --from a ph. booth begging to see some
one else in his office both visits did not go well--now my DR. here is wanting me to go back there--I just don't get these DR,S -that poor girl know telling what she went through there--I'm scared to get out of the bed any more--waiting on a DR.to call me back here let's see (4 day's now.)
TAKE CARE
SUSAN

Dear Susan -

If I may, Andi was in her early twenties when she died a couple of years ago. A copy of what must have been one of her wedding photos is attached, as it was to each of her postings.

Andi was from a loving family in Cincinnati, where she was getting really substandard medical care. I don’t know any details of her psychiatric history, but it was my understanding that there had been some significant issues that popped up prior to her getting RSD, or at least this was suggested to me by someone who believed that I was taking her loss far too personally: for reasons that will presently become apparent.

I first “met” her online in early December 2004 on BT1. She was also much more active on an MSN site which I understood that she co-moderated, or something to that effect. Here’s a copy of posting I put on her thread on December 9, 2004:

Dear Andi --

I am so sorry to hear you feel left with so few options, because there are many, many more. I don't know what the overall quality of medical care is like in Cincinnati, but could you get up to Cleveland? Take a look at Sheila, a.k.a. ready2ride's thread today under the heading of "My Trip To The Cleveland Clinic!" and her appt. with Michael Stanton-Hicks, M.D.

There is also all sorts of work that's being done now with ketamine on an experimental basis that offers the promise of great relief and perhaps complete remission. I also assume you have seen the web sides for RSD Hope http://www.rsdhope.org/ and the RSD Assoc. http://www.rsds.org/, but you should definitely check them out if not.

You don’t mention whether or not you’ve got a neurologist, I assume you do. What is his/her view of your situation? Given the interaction with MS, I would seriously urge you to try and been seen at the Cleveland Clinic ASAP.

That, and know that you have found a group of supportive people who are committed to insuring that no one goes through this alone and that we all have the very best available information in making our choices in dealing with this disease.

Mike

With the loss of all of the data from BT1, much of the detail that’s available to me comes from copies of pms that I saved at the time, after running them through WordPerfect because my spelling is so terrible. So from that, I have this fragment from something she had sent me, apparently in response to my (foregoing) posting:

My MRI showd lesions in my the white matter in my brain, and I have symptoms of MS, but the spinal tap came back negative, so my neruo is only treating some of the symptoms; I'm not receiving any MS treatments.

I should add as well that with the loss of the BT1 data, we no longer have access to some of the poetry she posted, some remarkable stuff. All I have was this note from an “In Memoriam” thread, to which I posted to as soon as news of her death reached us, in which I acknowledged how extremely disturbing her death for me at a very personal level:

First because her "poetic intelligence" combined with a sense of fragility reminded me so much of a college girlfriend who died many years ago . . . . In that regard I was fearful, even before Andi reported her initial suicide attempt. Second, in a series of email behind the scene, I was really pushing her from the start to ditch the bozos in Cincinnati and make her way up the Cleveland. (I was reading some recently posted stuff today in the chronic pain forum that the Cleveland Clinic’s pain clinic is understood by a number of folks to be a hit or miss proposition.) To know that the outcome at the clinic was at least one of the straws that broke the camel's back is something I'm going to have to live with for a long time.

When Andi began posting in December, 2005, I and a number of people on the board had the very strong impression – supported directly by her quotations of them – that her doctors were not providing her with anything approaching responsible management of her pain level because of a prejudice against providing any narcotics to young people, a prejudice that continues to this day, I might add. Here a posting to her from “Beth” that I managed to save, only because I chose to repeat it in a pm a sent Andi on December 22nd:

Andi - I can not believe with what is known today that your doctors are acting like they are stuck in the 60's and 70's. First and foremost, what are your parents thinking on all of this? They may need to become more fully informed outside of your current doctors attitudes. Also, and I am strictly pulling this out of midair, but, if there has been any drug abuse on your part in the past, that is the past, and does not mean you should not be allowed adequate pain meds for the present pain. Do not let anything keep you from moving forward to get adequate pain meds, being in pain to the point of suicide is a ridiculous alternative to the negative side of being on narcotics. Like Mike said, get to the Cleveland Clinic, give them your whole history and current suicidal tendencies and I am sure they will deal adequately with your current pain condition. Please feel free to be open and honest with us, help us to understand your current insurance coverage, people here are very resourceful and can advise you well no matter what the seemingly hopeless situation is. We really want to help, please let us, and please come on often so we may encourage you. You will get through this, there is a better place just down the road if you give it a little more time and use everyone's advice. Have your parents read these posts so that they can see there are far better ways to deal with this than what they are being told. My prayers are that God will give you the strength to keep going, ask Him to help you see exactly how to pursue this....please keep us informed, we are concerned....Beth

Then, at some point over the next couple of days, she posted to the effect that she has done something really stupid; there had been a suicide attempt. (As I recall, the subsequent information I received was to the effect that this might not have been her first attempt, but I my memory is a little hazy with the passage of time, etc.) That and her desperate and - also very young - husband had been trying to buy Vicodin for her on the Internet. Here are the pertinent aspects of my note to her of December 26, 2004:

Quote:

Originally Posted by AndiButterfly Thanks so much Mike. I actually did contact the Cleveland clinic about making an appointment, and I should be hearing back from them anytime now. I didn't go through my doc, so I guess I'm not a priority, and that's why they haven't gotten back to me yet. Thanks again! Andi

Dear Andi -

Forgive me. I had to write again. I am so concerned for you and your husband right now. Everything you've posted, your suicide attempt, the Vicodin purchases he's made for you on the Net. You two sound so alone there. Frankly, I wonder where your parents are in all of this. My fantasy is that it's like you just need some senior bull male in there, kicking your doctors in the *** until someone with any sense takes charge.

In fact, I pray that's already happening for you.

I'm leaving tomorrow for a week long Vipassana meditation retreat in Santa Barbara . . . .

* * *

Please know that you and your husband are in my thoughts this week. I hope and pray that, starting no later than 9:00 a.m. tomorrow morning, both your neurologist and pain dr. have as their single priority of this holiday week getting you immediate and effective pain relief and a screaming ASAP appt. in Cleveland.

Then let them enjoy their New Years.

peace,
mike

On January 17, 2005 she posted to the effect that she had been basically blown off by the Cleveland Clinic, told after something like a 10 minute workup by a resident (keep in mind that she had made the appointment herself, and was seen in a general clinic format, not by a “name” such as Michael Stanton-Hicks, M.D.) that there was nothing that they could do for her. I don’t know if it was her age alone or of the suicide attempt had contributed to it, but it could not have helped matters. Here’s a copy of a post I put up in response to a thread Andi started in which she posted the details of the debacle:

Dear Andi --

As someone who urged you to go out of your way to be seen by the Cleveland Clinic, I am personally embarrassed and as outraged as everyone who has posted.

Frankly, it sounds as though you were seen in a pain clinic by a resident, rather than by a consultant, or whatever title by which senior physicians at the institution are known. And "may or may not have MS" is simply unconscionable. Can you get either one of your current treating physicians to hit the roof for you on this one?

My sincere apologies again,
Mike

That thread was the last I heard from her. I believe that I sent out a couple of pms and may have even posted a thread asking if anyone had heard from her - I just don’t remember - but remember vividly that on or about February 25, 2005 someone from the MSN board was kind enough to think of us, and put up a thread announcing her death two or three weeks before. I also recall that her family wanted to preserve her privacy and begged us not to allow her to become some sort of a posthumous poster-girl for RSD.

I think the primary lesson that can be taken away from this tragedy, if there are any, is that you should always attempt to have appointments with a specialist made through your primary treating physician. Not that it guarantees anything, but it can’t hurt. Beyond that, anyone under 35 or so has to be aware of the prejudice that exists in terms of giving narcotics to young people and do whatever you can to allay those concerns. Once again, a letter of reference of sorts from the primary treating doc couldn’t hurt.

I hope that this is useful for you. And good luck.

take care,
Mike

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I was not around at that time but my heart goes out to her mostly and any one who tried to help. What a complete waste should of never happened.


Again, SO SORRY....

Ann

Mike - never think you had any part in Andi's decision to abandon hope. She had tried a couple of months earlier with neurontin (hard to top yourself with neurontin, but can damage the kidneys bigtime) - also, Andi wasn't that young, 26, and had addiction issues...who could know? You did your level best to lead her to the light, be proud of yourself for that. You cared, and showed it. Good for you.

Roz - I do hope you can get this cellulitis cleared up, you must be feeling pretty low, take care please...

Here's hugs for you both
all the best.

I didn't know of Andi on BT - do you all feel comfortable with the post and the details about her?

Someone mentioned to me that her family did not want some of the info out at the time?
but it is 2 yrs after now?

Just asking you - as I'm not sure about it?

Dear Jo -

First of all, there's a lot of information I didn't post on Andi, including her last name, what her father did for a living, that sort of stuff, some of which was passed around at the time of her death with things such as links to her funeral announcement in the local papers along with other items she just shared with me in pms. So by no means did I do a complete information dump of everything I had. What I posted was information that was relevant to the level of medical care that she did (or did not) receive.

Secondly, but for the loss of data on BT1, the amount of information that would be out there would be substantially greater than what I provided, by a couple of orders of magnitude.

Thirdly, I shared the information in response to Susan's inquiry because what happened to Andi stands as a text-book example of how not to get the attention one needs from the medical community. Where Susan expressed concerns about her own treatment at the Cleveland Clinic and specifically asked about Andi's situation in that regard, I felt that she had a right to know.

And finally, you should know that I specifically vetted my posting with another relatively senior member of the community, someone who's judgment is beyond reproach I.M.H.O., and got the go ahead to post.

I hope this has allayed your concerns. If not, let me know.

Mike