Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-28-2008, 07:01 PM #11
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Ada,
I want to learn more about your pelvic pain. I have pelvic pain since 2004 due to pudendal nerve problem. I had developed RSD from IV trauma last year. I have put off surgery to release the pudendal nerve due to the RSD. However, i have been thinking about the surgey. Of course, i am very worried about the possibility of having RSD spread to the pelvic area and or getting worse. So What are you planning to do with your pelvic pain/
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Old 04-30-2008, 12:59 AM #12
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Re: HERS Foundation

Thanks for the link but I found nothing positive or even neutral on your website regarding hysterectomies. It is all negative, very biased and I believe it is designed to scare people away with all the "facts", even though many of these facts have been disproven in studies that are freely available to be read online. If I am wrong here than I apologise but I'm just going by what I saw and read on the website.

I have been doing a lot of research and it has taken me six months to make this decision and now I am happy that for me this is the best decision, even though I have RSD and may have complications afterwards. I started this thread to get information from other RSDers who have gone through this procedure and to get info about limiting pain etc.

Oh, and I think the word "castration" in reference to a hysterectomy is totally over the top and would offend many women. You are adding to the idea that women are not women once they have a hysterectomy. And the majority of the women who have commented on your website did not spend a lot of time researching the procedure and their options before having their hysterectomies, many of them just went with what their doctor suggested and read a panphlet they were given at their pre-op appointment. Obviously anyone who goes into this without enough study and research and testing (in regards to whether other procedures are better for them) are asking to be shocked at the results or to regret the decision later. And 50% of women had suicidal thoughts afterwards? That can't be accurate. Just within my social network I've talked with about 10 women who've had hysterectomies and ALL of them have been happy with the results since day one, so that blows your "50% have suicidal thoughts" theory

And in the time I've just spent searching your website, I am yet to find any mention of RSD before or after hysterectomies.

Thanks to everyone else who replied.
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Old 04-30-2008, 07:23 AM #13
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Quote:
Originally Posted by tayla4me View Post
Thank you for that information. I do know someone who got RSD after her Hysterectomy but she has conquered it with a single Ketamine infusion. Hers was after the delivery of her third baby due to losing a lot of blood so she had a newborn at home.

I think that the chances of having a flare up will be decreased if the doctors are aware and willing to take precautions like running Ketamine or having an epidural for a couple of days after the Hysterectomy.

Cake, perhaps your surgeon might contact your Pain Management doctor to get his advice for special precautions for you.
Good luck for the future
Tayla




I should have read this stuff from The HERS foundation before I gave thanks for the article.
I do know someone who did get RSD post Hyster but I know and have looked after hundreds who did not get RSD
Cake, this article is nothing short of propaganda from a 'non-profit' organisation which needs to do a LOT more research.
'CASTRATION" what the-----Most women do not have their ovaries removed unless there is a malignancy so this makes the use of this word pure scare tactic.

Although I have yet to have a Hysterectomy, I would have one in a heartbeat if it was warranted. You have made a well informed decision Cake and I am sure you will recover very well, especially if you can get your pain team involved in your pre and post op management.
Good luck for your surgery
Tayla

Last edited by tayla4me; 04-30-2008 at 07:25 AM. Reason: removed profanity
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Old 04-30-2008, 05:01 PM #14
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Thank you Tayla

My Pain Management Dr is going to be involved and will run a ketamine infusion afterwards, so hopefully that will be enough to keep the rsd at bay.

Whereabouts in Australia are you Tayla? I'm in Newcastle and am very lucky to have a great pain team here.

Take care

x Kate
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Old 04-30-2008, 08:17 PM #15
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Cake,
I am on the Mornington Peninsula Victoria, I am managed by Dr Murray Tavener from Frankston.
I am fortunate to have quite a choice around here or within an hours drive away. I meet at a Pain Management group that combines people from all over Melbourne, mainly Eastern and Sth Eastern suburbs and have met quite a few people (mainly women) with RSD.
Who do you see up there? One of the people from our group has come from up there and was seeing someone she did not like at all but after reading your post I don't think it can be the same person.
I think his name was Russo?
Good luck with your Hysterectomy, are you having an Abdominal one?

Tayla
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Old 05-01-2008, 12:20 AM #16
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My problem after my very early hysterectomy was adhesions. That is like you, I had an overy left in too. Only thing is, they cut me,removed my adhesions around 4 times, took the overy and again adhesions. You need this really checked out! It is VERY painful! lots of staples too, going straight down my tummy! Anyway, look into seeing if you have adhesions in there! ~Love, Diane.. Oh, they are using laser surgery now for this.
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Old 05-01-2008, 12:30 AM #17
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[COLOR="Blue"]Hi Kate!
Girl, you hang onto your overies as much as possible! You need these as, you do not want the problems of early menapause. If their bad, by all means, please do get them removed. I am no doctor, but as I was being wheeled down to surgery, a beautiful older nurse wispered in my ear and said, honey, don't let them remove your overies if they don't need too. And she went on to tell me, I could even function(NOt go into early menapause, even with one or a chunk of one(Of my overie-overies. Just ask lots of question's for your doc. first,write them down, so ya don't forget!! Good luck and I will be praying hard for you!! ~Love, DesiCOLOR]
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Old 05-02-2008, 05:27 PM #18
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hi cake

i'm not sure if this would be an option with your rsd, but have you looked into ablation?

here is link from webmd about it:
http://women.webmd.com/endometrial-ablation-16200

it's just the lining that is removed. no more bleeding.

there are many other sites that give more information.
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Old 05-03-2008, 01:00 AM #19
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Thanks Curious, but we've looked into that and its not really an option for me, partly because I have a tilted uterus and also because of my c-section scar- they've looked at the scar on the inside of the uterus and it's apparently not good enough for them to burn off 5mms of the uterus lining- too risky apparently. And when 50% of people end up either needing it done again or still needing a hysterectomy later, there wasn't much point in putiing myself through two procedures. Plus my mum had cancer of the uterus (endometrial cancer) a few years ago that luckily they caught early, so all in all this is the best way to go. Take the darn thing out! lol

I just want to make sure if we're going to do it, we're going to do it right and not take any chances with rsd pain etc!

Thanks for the thoughts



x Kate
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Last edited by Cake; 05-03-2008 at 01:01 AM. Reason: Edited because I can't spell ;-)
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Old 05-03-2008, 08:55 AM #20
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Default Hi Cake,

It sounds like you will do ok since you are having the ketamine treatments. That might help keep the RSD from going to that area.

The hospital I had mine done in didn't do blocks. They still don't. They are far behind times. I only go there if I have to since it's near me.

As I told you, they only took one of my ovaries at the first surgery and then a few years later the other one had to be taken out anyway. I went to sleep thinking the first time would do it. I just had too much wrong in there and then they leave an ovary that the Dr. said wasn't any good in the first place.

A person does what they have to do to get better. You know this is what you need and you are a very strong person and will be ok with that decision.

Ada
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