Hi Joan,

You wrote: First, before I get in trouble, let me state that I enjoy everyone fo your postings and think you do lots and lots of homework. i agree with a lot of what you say and then there are times when i am confused my it. so that being said:

I have become increasingly impatient with two people who have followed me from thread to thread and repeatedly misquoted me, falsely summarized my views and asked questions that I have already answered more than once. In my view they are harrassing me. On the other hand, I consistently ask for questions and for arguments.

Replying to them has sapped my energy and made it appeat that I object to legitimate questions or debate. I don't.

You and Amber ask essentially the same question in different ways: You apparently suffered nerve damage during your surgery, while she suffered nerve damage that led to the surgery and possibly more nerve damage during the procedure; these injuries are in addition to what appears to be classic models of IRI.

I think that neither group of surgeons recognized that both of you suffered a classic ischemia reperfusion injury: Some sort of tourniquet ischemia done in order to prevent blood loss, followed by a widening area of inflammation and then by a new ischemic stage in which the arterial blood is blocked from reaching the capillaries and thus the cells.

The fact that they failed to correctly identify an IRI is easy to understand: The disorder was long believed to only occur after surgeries involving internal organs. In the 1980s, researchers learned that it can happen in skeletal muscle, but very little has been written about this, and the little I was able to find involves transplanted tissue or restoring amputations (cases that involved long periods of ischemia due to being completely disconnected to the circulatory system).

I believe that physicians who understand IRI believe they completely understand how it is caused and haven't shown any interest in looking for other examples of possible IRI. This makes sense.

I think it important to point out than in just 20 years they discovered a completely new disorder, learned how to prevent it and how to effectively treat it. Contrast this with RSD "experts", who can't agree on a cause for this disease; have no idea how to prevent it, and; have no clue as to how to effectively treat it.

It is time that the RSD "experts" to look beyond nerves and nervous systems, which have led nowhere after 140 years, but they won't. They continue focusing completely on some sort of nerve damage thay hope to find someday, and have closed their minds against any other possible cause.

I believe if they were aware of evidence of tissue hypoxia in RSD, specialists in IRI might suspect what I concluded, that RSD is IRI; They don't know about tissue hypoxia in RSD because they are mostly thoracic surgeons who never see an RSD patient, and if they did have occasion to operate on a patient with RSD and looked up this disorder, they wouldn't see a word about cyanosis, which could provide the clue they need. They don't find it because RSD "experts" deliberately refuse to mention this most important sign.

In a previous post, I went out on a limb and said that every instance of RSD following surgery is, by definition, an IRI. I don't regret saying that, and believe it is only a matter of time before this becomes a uniform belief among medical professionals.

I believe that if cyanosis had not been deliberately omitted from the signs and symptoms of this disease, it is possible that someone familiar with IRI would have already figured this out.

Amber, while my reply was directed to Joan in order to keep it focused, it is the same reply I would make to you. I suggest that both of you suffered both nerve damage AND an IRI...Vic

Flippnout.

I must say that Vicc you have your point of view as I said befor you may be right, who knows but I still have to say that it is just your theory, Can we agree that it is my hypothesis and that I have the right to present it and allow readers to decide whether it makes sense?

I do not agree with saying all docs who study this are wrong. Vicc my friend you cannot say that, Yes I can, and I will whenever I believe they are wrong. You may call me "friend", but I think your posts betray a different attitude.

Again Vicc you should argue this with the medical field first, but do not call the docs who study this all wrong your research material you have did come from the medical field you say are wrong,

I argue that RSD is an IRI where I feel my words will accomplish something. I have no more access to publish my views in medical journal articles than you. I do have access to people who suffer from this disease. I do what I can.

and are you a doc? You have asked this before, but I will answer it one last time: No I am not a physician, nor is a medical degree required in order to post opinions at this forum.

please to give some respect to men and women who do study this most with a MD with PHD's in front The M.D. or Ph.D follows the name, it doesn't precede it. I respect honest physicians, but when one of them deliberately omits a primary sign of this disease, he/she is harming us and deserves contempt, not respect.

I also feel it is wrong to target this site on a another board, I have no idea what this means.

I wish you well and please if you can stay here it is good that you are here Ok, if you say so.

This is your third post in which you have said essentially the same things. If you choose to make a fourth, similar reply, I won't bother to answer...Vic

I use Trental & have for over 3 years now. I think my nerve meds worked better after I started it. I take Neurontin & now also Lyrica for the nerve pain, numbness & full feeling that RSD causes in my feet.

To whoever it was who had a neuroma removed from their feet,
Also when they do remove neuroma's in the feet they use a tourniquet. I had two removed in one foot & have left the neuroma/s in my other foot alone. I had the neuromas before I had surgery & they caused RSD to happen in my feet. The removal of the neuroma in my left foot only made RSD MUCH MUCH worse in that foot. Lately tho the right foot hurts worse probably cause that neuroma has grown. It has been 4 years since all this happened to me.

Vicc,
I can't say that I totally understand all that you say, but what I do understand I appreciate knowing. Thanks.

DebbyV

Hello Vicc;
perhaps I am misunderstanding you but:
I assume that as you are on this site you suffer from RSD/CRPS. You maintain it is an IRI which is treatable - have you received treatment and are you better?
I do hope you are.
If you don't mind, could you please share with us how you resolved your RSD?
What treatments were you given for the IRI that is your RSD?
How efficacious were they?

Have you sought out a practitioner who is able treat your RSD in the way you view so adamently it should be treated?
Again I do so hope you have.
Or
If your pain and RSD is maintained, then I am sorry because this condition ain't no fun to live with. .....
but where does that leave us?
I do hope you have news of a positive personal outcome to report to the rest of us.

Kind regards
Auberon

Hello Auberon,

Thank you for questions that others might have (wrongly) felt might be inapproptiate. They are completely proper to ask of someone who says what I say about this disease and possible treatment.

Yes, I am diagnosed with RSD; a diagnosis either made or confirmed by 11 or 12 physicians of various specialties, but I'm sure everyone here would gladly accept the level of pain I experience from RSD of both feet. I will talk about why I think my pain levels are so low in a moment, but first I need to explain why I have to answer that I have never undergone hyperbaric oxygen (HBO) therapy, which has been shown to be efficacious in the treatment of IRI:

My medical history dates back to a back/spine injury I suffered in 1979, which was severely aggravated by two bungled laminectomies. I came out of them with the diagnosis of arachnoiditis (scar tissue of the middle layer of the tissue that surrounds the spinal cord). It is absolutely untreatable and can leave someone with anything from mild to severe pain. I suffered moderate pain with L/5 radiculopathy of the left leg.

I was unable to work at any of the jobs I had ever done, and spent ten years trying to support a family on the pittance that SSDI gives people. I was fiannly able to return to college (I had done 2 years in the 70s) and major in social work.

I was a psychiatric social worker at a state psych hospital in 1995, when a newly-admitted patient assaulted me. It was totally unexpected and I was in a wheelchair, so I was severely injured before help could arrive.

My diagnoses from that incident included bilateral S1 radiculopathy resulting from narrowing of the foraminal space and nerve root compression from scar tissue, and RSD of the left foot.

The arachnoiditis and L5 and S1 radiculopathy left me with moderate ro severe pain that is well-controlled by opiates UNLESS I do any physical activity, at which the pain becomes severe and opiates don't help much. A trip to my doctor leaves in markedly increased pain for 3 days (I pray I don't come down with diarrea; I know I couldn't tolerate that level of pain). The radicular pain could be at least partially relieved by endoscopic surgery, but spine the few neuros who do that won't touch me: it is barely past the experimental stage and they only want patients they can completely cure).

The primary reason I have not presented for HBO is that the travel, transfers and arrangements within a chamber make it too painful to contemplate. I would, however, figure out some way to get it done if I suffered as badly as so many here.

I believe my RSD pain is so mild because I never had the opportunity to aggravate it. I have been pretty much confined to living in a recliner chair 24/7 since my injury and my condition has worsened over time so that now, the only times I get out of this chair are to use the toilet and be bathed at the kitchen sink, and I must have assistance to transfer.

Immediatly after my 1995 injury, doctors prescribed physical therapy, so I went. I didn't make any friends at that place; refusing to do anything that caused my pain to increase, which, of course, means anything at all. The PTs were unable to persuade me that "no pain, no gain" makes sense in all situations, so my RSD was not aggravated by PT.

Being confined to a recliner chair from the onset meant that my feet were almost constantly elevated. I can't explain why that seemed to be efficacious, but I know that when they are elevated, my skin color is normal, while they turn purple in five minutes in a dependent position. I guess you could say my belief is an intuitive impression.

Additionally, when my condition began to really deteriorate about 4 years ago and I entered the stage at which I am today, my feet have been elevated 24/7/365; After this began, my burning pain and allodynia began to subside, and I no longer take the GABAergic drug Lamicatl. I now take oxycodone only, and that for my back/spine pain; I never noticed any RSD pain relief from it.

The only treatments for RSD I received were two sympathetic blocks. The 1st didn't help and the 2nd only a couple of hours of some relief. When I returned fot the 3rd, a PM doc actually told me that since the first 2 hadn't cured me, there was no point in trying a 3rd. (I'm usually pretty sharp, but I confess it didn't occur to me -- at that moment -- to ask hum why I would want a 3rd if the 2nd had cured me. I deeply regret that lapse).

There you have it: No treatments, no PT (yet full range of motion in my ankles), no activity; but I have gotten slightly better.

My hypothesis that RSD is IRI is based on my study of the literature about this disease, my intimate knowledge of its signs and symptoms, and my extensive research into IRI.

I concluded that since every sign and symptom of RSD can be explained by hypoxia alone and since both both diseases began with physical trauma, followed by a period of spreading inflammation that later becomes hypoxic (usually accompanied by cyanosis), it is more reasonable to assume they are one and the same, than to assume RSD is caused by nerve damage -- damage that the RSD community agrees does not occur in CRPS-I -- and that has never been linked to all of the signs and symptoms of this disease.

I read your most recent post in Abstracts, and pretty much agree with everything you said, but you left the big question unasked and unanswered: What in the Hell can we do about it?

Generations have accepted that this disease is incurable. They lived, suffered and died with RSD. They probably never met anyone who shared this awful disease.

Today, for the first time in the history of the world, we have access to almost everything ever written about medicine. All we need to do is click a mouse. I took advantage of this fact and spent two years studying everything I've discussed in all posts on RSD.

I'm not asking anyone to run out and sign up for HBO based on what I say; I'm trying to give everyone here a reason to do the work necessary to learn all this for themselves. I write that hypoxia alone can cause every sign or symptom that anyone here is experiencing. If it is truly part of RSD, it can be explained by hypoxia.

I hope this persuades someone to look up hypoxia and learn whether the things I say are really true. If fixing hypoxia can fix your RSD, it might be worth taking the time to learn the facts about hypoxia.

Talking about HBO is another reason that might cause someone to take the time to learn about it; if it is possible to find remission through HBO -- and at a lower cost than any other purported therapy that we already know won't work -- it might make sense to look into exactly how it acts upon RSD.

Every road leads to ischemia reperfusion injury. Taking the time to learn does not mean leisurely reading of a few journal articles that don't make a bit of sense to you. The only way to do it is to work hard.

Most people won't even consider it; others will try for a few days; others even further: I am guessing that two or three people will read far enough to confirm that everything I present in my posts is accurate up to this point, so there is no reason to assume I might suddenly start making things up. If this happens, I'm berring that at least one of them will try HBO.

I only hope that if someone does, she/he will come back here and tell everyone else about it; and someone else will decide to try it. I have been disappointed in the past, as I persuaded three people -- who I believed were contemplating suicide within days or hours -- to try HBO first. That their lives were worth risking a couple thousand dollars before they decided to end them.

They got better. One continued to post at BrainTalk for a few months, one wrote a couple of posts, and one talked about his experiences in the BT chat room but wouldn't post on the forum; I hoped that others would pay attention, but they didn't.

But I have nothing better to do than try again. So I'll write posts that just **** some people off: How dare think he's smarter than a doctor?" And I'll hope that someone listens. In the words of Kris Kristofferson: "Cause I don't believe that no one wants to know."

I see I have completely hijacked your post into a new course, but I have a bad habit of doing that. Anyway, I don't think I've ever layed out my goal like that before and I think I want everyone to know what I'm doing; and it took too long to write all that stuff, and I can't just delete it; so I guess your post is officially hijacked. I'll try not to do it again...Vic

VIC,
i thank you for your info. i will read and re-read it so it will sink in. it was a very long surgery, and i am sure preventing blood loss was a huge issue. now, i have one more question for ya! how would one treat iri vs how one treats rsd?? in your humble opinion, of course. fondly, Joan

enough is enough is all I can say peace to you all and pain free day!

I asked a question and just wanted to make sure you had seen it ... thanks vic. hope you are feeling better. joan

Hi Joan,

As it happens, I just finished my answer to your question; and when I hit "preview" it came out with all of that <font> arrow stuff. Totally unreadable. I suppose it has a purpose, but it would be nice if people talk were the default.

I tried toggling the box at the upper-right corner, but that didn't work. I don't know what to do except post this and hope someone will come up with a helpful answer. I'll just leave that reply up and hope help arrives.

Otherwise, I'm going to have to wait until tomorrow to rewrite my reply...just too damn tired to try again right now. I will post a reply...Vic

no rush vic ... i'm sure i'll still have rsd after you get some rest!! take care.
joan