Having a real bad week, scared!!!!
 

I WAS OUTSIDE YESTERDAY LOOKING AT MY FLOWER GARDEN IT ISN'T DOIN WELL BECAUSE OF ALL THE RAIN. MY DAUGHTER GAVE ME A MARIGOLD PLANT FOR MOTHERS DAYGIFT IN 1988. EVER SINCE I'VE BEEN PICKING THEM AND DRYING THEM OUT. I GET TONS OF SEEDS. WELL I WENT TO TURN AROUD AND TRIPPED OVER A TOY ONE OF THE KIDS LEFT OUT. I SPUN AROUND SO HARD AND LANDED ON MY BUTT. I TRIED TO GET UP AND THE PAIN SHOT UP MY LEG. I COULDN'T OFF OF THE GROUND. I SCREAMED FOR MY HUSBAND. IT STARTED SWELLING SO FAST BY THE TIME HE GOT THERE IT WAS LIKE A BALLOON & PURPLE. THEY GOT ME INTO THE CAR AND I SCREAMED ALL THE WAY TO THE HOSPITAL. WELL I BROKE MY KNEE IN TWO PLACES. OF COURSE ITS THE LEG WITH THE RSD. IT HURTS SO BAD, THE PAIN CLINIC DOUBLED MY DOSE OF OXYCODONE. i GO TO THE ORTHO DOC ON MONDAY. THEY SAID I MIGHT NEED AN OPERATION. I AM SO SCARED. PLEASE PRAY FOR ME. THANKYOU,

SUE K

( ( ( ( ( Sue ) ) ) ) )

I'm sorry to hear of your accident and bone break... :eek:

Sending soft gentle hugs your way.

Also sending prayer for quick healing and low pain levels... :smileypray::smileypray:

:hug:
Abbie

Hi Sue,
I am so very very sorry. We have enough to deal with, let alone breaking a bone.
I would encourage you to get the best Orthopedic Knee Dr. possible, even if it means going to another state, if you can afford it. I have some names of Drs. on national sports level with top team Drs. My husband here in Scottsdale,Arizona had the Diamondbacks Team surgeon for hand,arm. I went to Oregon to the University of Oregon Sports Injury Dr. Saw the Knee Dr. at one time when we lived there and went back and was diagnosed with RSD with the Hand Dr. in less than a minute. Have met Kobe Bryants Knee Dr. I'm now saying these names to bragg, but after my Mom died from a bad Dr., I am a little extreme in looking for the best Dr. for whatever part of the body we need.
Some of the others on here have more experience in the preparations before surgery to prevent spread. Ask for help in that specific area and you'll get some real good suggestions.
Please know we are all thinking of you during this difficult time. Please keep in touch and let us know how things are progressing. Your friend, loretta

:circlelove: is around you ( ( ( ( ( Sue ) ) ) ) )..

I am so sorry you are in such a painful place. I will keep you and yours in my thoughts and prayers. Try to relax, take your meds, and just know you are surrounded by a circle of love.
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Dew

Dear Sue -

I am so, so sorry to hear this. I agree that immediate pain control is the thing to be done first.

First things first, if the oxycondone is not doing the job, even at the higher dose, you may want to ask your PM doc about a stronger narcotic than oxycodone, say methadone, Meperidine (demerol hydrochloride syrup), or even oral Dilaudid (hydromorphone). Just make sure you get an appropriate prescription med to counteract what could otherwise be an immediate shutdown of your GI track: lately they seem to be doing a lot with very small doses of opioid antaganists, which keep the gut working but aren't enough it leach into the blood stream and thereby counteract the property of the opioid in the first place. I was regularly using Naloxone Hydrocloride (Narcan) taken via an oral syringe, until the price went from between around $140 a case - roughly a 40 day supply - to just under $800 in less than a year (it's generic, but there's only one manufacturer) so I went off in favor of over the counter products, only to have my combination of Oxcycontin/oxcycodone basically stop working, at which point I was switched to 30 mg. of methdone a day, and a couple a weeks later, I had two hernias to show for it!

I'm probably preaching to the choir on this one, but this is what I have learned in the past few weeks since it became apparent I needed surgery for the double hernias: putting aside the question of the appropriate sugeon, the procedure as a whole has to be done in a hospital where you can get a pre-op consult with the anesthesiologist to go over your drug list and the recommendation of your pm doc. concerning the anesthetic component of the procedure, blocks, continuous regional anasthesia, etc. Turns out, it's a simple yes or no question on whether such consults are available. If they aren't, the advice I've gotten from a very well regarded general surgeon in a "regional medical center" was that I had to move on down the road to a university medical center or other tertiary treatment facility. Otherwise, what happens at many places - including his hospital - is that you'll have an anesthesiologist assigned the day before the procedure, who will just be looking at your list of meds a few minutes before they bring you in. My internist told me that in that scenario, he was personally familiar with situations where such randomly drawn anesthiosiolgists, looking at lists of prescription drugs far shorter than my own, had thrown up their hands and refused to go forward, not being 100% sure how any particular general anesthetic would react to all the meds the patient was on. And that's not even talking about having the special precautions taken that are appropriate for a CRPS patient entering surgery!

I'm sorry for going on so, but I hope that some of this information may be news to you and therefore potentially useful.

You are very much in my thoughts. As well I'm sure, of all of the old-timers on this board, and then some. :grouphug:

Mike

ps Dubious is 100% correct in his comment below. There is no reason to wait until surgery to attack the barrage of pain signalling current hitting the dorsal horn of your spinal cord for which pain killers provide no protection at all. Perhaps a hard hitting series of bilateral lumbar sympathetic blocks, where even though your CRPS is chronic -on account of which there may be little or no pain signalling "from" the leg even though that's where it is surely "felt" - the knee issue is brand new, and should be responsive to blocks for the same reason that prophylactic blocks of one sort or another help prevent spread in the OR.

All the advice sounds good to me. I would only add that you should talk to our PM doc about the efficacy of epidurals, ganglion blocks, etc., anything to keep the pain signals from hitting the spinal cord.

Good luck, happy thoughts and prayers to you!

Hi Sue,
I'm so sorry for the terrible ordeal and for the pain you are experiencing! Let's hope you will not need surgery !!

If you do need an operation, it will be comforting to you if you know that your medical team doctors (anasthesiologist, pain management, surgeon,, etc.) are all on the same page and that there is a plan in place for you pre-op and post-op!! That will make you feel more confident and assured going into surgery! It's always a good idea for you and your family to make a list of questions,and any concern you might have about pain control, etc. That will ease your mind as well....
But here's hoping you will not need surgery!!!!

Thinking of you,
Hope4thebest :hug:

Prayers are on their way,,,,,,,,,,,,

THANKS EVEYONE. iTALKED TO MY PAIN CLINIC AND IF I NEED THE OPERATION, THEY WILL BE INVOLVED IN EVERY STEP OF THE WAY. I JUST HOPE THE RSD DOESN'T SPREAD. MY POOR HUSBAND IS IN SO MUCH PAIN FROM LIFTING ME UP, GETTING ME TO THE BATHROOM ,AND INTO THE ONLY CHAIR I CAN SIT IN. HE HAS HAD 3 SPINAL FUSIONS AND I FEEL DO BAD FOR HIM. WELL I HAVE TO GET BACK TO THE RECLINER. THANKS AGAIN TO ALL OF YOU.

SUE K

I am so sorry about what happened. You will be in my thoughts as well. I'm really glad your pain doctor is aware as well. Try to take one day at a time though I know that is very hard and take care.

Sue I am so sorry to hear that you are in so much pain and to have that on top of your RSD pain it must be so hard on you. Please remember we are all here for you! You will be in my prayers every day and night. Please take everyones advice about getting your pain under control that is the first and most important thing! God Bless! Love Always! Breezy55 :circlelove:

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love,
Dew

sue
you poor thing i am so sorry to hear this. !! i know how much you pain you must be in last year i broke my foot that also has rsd in and torn a ligament .. i will keep you in my prayers..

(((((((((((((hugs))))))))))))))))))

carrie

Mike
how did switching from oxycodone to methadone cause your hernias? does it weakin the stomach walls or cause more constipation? Thats a notable thing to know, it will keep alot of us from running into the same problem,,,,,,,,,,,,,,,,,bobber

I was started out on what I understand was a fairly hefty dose of Methodone, 30 mg./day. Unfortunately, my pm doc. didn't know that I had discontinued the use of Naloxone HCL, taken orally 1/mg. every time I took an Oxycontin/oxycodone, due to the extreme cost issue, when I had found that Senaokot-S, a good over the counter stool softener that he had also reccommended, did the trick when I just took 4 tablets at bedtime. Turned out, that was nothing against Methadone, which completely shut me down. Then it was just a matter of straining to produce results, and that's all it took. That said, I was later advised by a pharmacist that I would have had better luck taking the Senokot-S with the each of the three daily doses of Methadone, as much as 8 tablets a day.

Live and learn.

Mike

Sue, you poor darling i am so so sorry
 

Sue- that is my worst nightmare, my worst fear, another injury to mkake the pain worse than it is now. You are in my prayers from this moment forward I am so so sorry Sue, Make sure if surgery they put a marcaine pump in for the pain as well. this is critical!!!!! Please keep us posted. Sincerely cz









[QUOTE=sue k;548586]I WAS OUTSIDE YESTERDAY LOOKING AT MY FLOWER GARDEN IT ISN'T DOIN WELL BECAUSE OF ALL THE RAIN. MY DAUGHTER GAVE ME A MARIGOLD PLANT FOR MOTHERS DAYGIFT IN 1988. EVER SINCE I'VE BEEN PICKING THEM AND DRYING THEM OUT. I GET TONS OF SEEDS. WELL I WENT TO TURN AROUD AND TRIPPED OVER A TOY ONE OF THE KIDS LEFT OUT. I SPUN AROUND SO HARD AND LANDED ON MY BUTT. I TRIED TO GET UP AND THE PAIN SHOT UP MY LEG. I COULDN'T OFF OF THE GROUND. I SCREAMED FOR MY HUSBAND. IT STARTED SWELLING SO FAST BY THE TIME HE GOT THERE IT WAS LIKE A BALLOON & PURPLE. THEY GOT ME INTO THE CAR AND I SCREAMED ALL THE WAY TO THE HOSPITAL. WELL I BROKE MY KNEE IN TWO PLACES. OF COURSE ITS THE LEG WITH THE RSD. IT HURTS SO BAD, THE PAIN CLINIC DOUBLED MY DOSE OF OXYCODONE. i GO TO THE ORTHO DOC ON MONDAY. THEY SAID I MIGHT NEED AN OPERATION. I AM SO SCARED. PLEASE PRAY FOR ME. THANKYOU,

http://dl2.glitter-graphics.net/pub/...vyez89bmqc.gif
:hug:
Dew

Sue,

OMG! No!!! :(

I would be scared too. You broke your knee in two places and it's the RSD leg? I hope they are willing to do surgery on it as the fracture probably can't remain as is.

Keeping my fingers crossed for Monday.
Let us know what happens!

Thanks Mike,
i was going to ask the same question as bobber, about your hernias. My husband had double hernia surgery, no fun. Isn't it outrageous how a med can skyrocket within one year. Not acceptable, but what can we do? Take care, your friend, loretta

Sue,

How are you today? Do you know more yet?

http://dl7.glitter-graphics.net/pub/...e6ryo8glb0.jpg

How are you feeling today,Sue?
:hug:

Sue,
Please know we are thinking of you day and night. Please let us know, when you are up to it, what they need to do to make your life better. It's such an easy thing for us to fall. Take care, and sounds like you are in good care. Your friend, loretta soft hugs:hug:

Wow Yeouch!
 

Aww Sue.. Big healing cyber hugs hon, :grouphug:

Thanks everyone,
having the operation on the 19th. Doc said the knee is pretty much ruined. Its been hard , going crazy just sitting here. Good thing my pain doc talked to the ortho. They will be doing a block before they put me to sleep to try and stop a rsd flare. Thankyou for all your thoughts and prayers. You guys are the only ones who understand.

Sue k.

Dear Sue -

So sorry to hear about the prognosis on the knee. Are they putting in some sort of a replacement joint?

The one thing that is reassuring is that after years of perfecting the art, you have probably got some of the best coordinated care out there. You should come out of this just fine.

Good luck, or as is said in some quarters, Break a Leg! ;)

Mike

Dear Fmichael<
 

Mike Can u explain how your gi tract shuts down due to pain.. Never saw anything on this before.. PM me or whatever please..Thanks Sunshine

That's a few days away - please take care of yourself in the meawhile. I am so sorry - all of us are so vulnerable, aren't we? If we get sick, or hurt, it's very different and very scary, and not at all like it was before we had RSD.

I am glad that your PM doc and ortho have a plan. Keep in touch and let us all know how you are doing. We are here for you.

Sandy

No problem. What I was saying is that it's the narcotic that shuts down the GI trak via opioid receptors in the bowel. The trick is to give just enough of an opoioid antagonist to keep the opiod-receptors in the bowel from shutting down while not allowing enough of the opioid receptor to enter the blood stream and counteract the analgesic effect of the narcotic. See, e.g. "Fixed-ratio combination oxycodone/naloxone compared with oxycodone alone for the relief of opioid-induced constipation in moderate-to-severe noncancer pain," Simpson K, Leyendecker P, Hopp M, Müller-Lissner S, Löwenstein O, De Andrés J, Troy Ferrarons J, Bosse B, Krain B, Nichols T, Kremers W, Reimer K, Curr Med Res Opin, 2008 Dec;24(12):3503-12.

Leeds Teaching Hospitals, Leeds, UK.

OBJECTIVE: Opioid therapy is frequently associated with treatment-limiting constipation. Naloxone is an opioid antagonist with low oral systemic bioavailability. This Phase III clinical trial assessed the safety and efficacy of an oral fixed-ratio combination of oxycodone prolonged-release (PR) and naloxone PR compared with oxycodone PR in relieving opioid-induced constipation.

STUDY DESIGN: This double-blind, multicenter trial was conducted in specialist and primary care centers in four European countries in an out-patients setting. The study included 322 adult patients with moderate-to-severe, noncancer pain requiring opioid therapy in a range of >or=20 mg/day and <or=50 mg/day oxycodone. Following a run-in phase patients were randomized to receive oxycodone PR/naloxone PR or oxycodone PR for 12 weeks. The primary outcome was improvement in constipation as measured using the Bowel Function Index (BFI). Secondary/exploratory assessments focused on pain intensity and additional bowel parameters. Trial registration: NCT00412152.

RESULTS: A significant improvement in BFI scores occurred with oxycodone PR/naloxone PR compared with oxycodone PR after 4 weeks of double-blind treatment (-26.9 vs. -9.4, respectively; p < 0.0001), observed after only 1 week of treatment and continued until study end. A significant increase in the number of complete spontaneous bowel movements and decrease in laxative use were also reported. This improvement in bowel function was achieved without compromising the analgesic efficacy of the oxycodone component; pain intensity remained constant throughout the study. The incidence of adverse events was comparable in both groups and consistent with those expected of opioid analgesics. As the study was limited to a dose range of up to 50 mg oxycodone equivalent per day, further research on higher doses would be recommended.

CONCLUSION: The fixed-ratio combination of oxycodone PR/naloxone PR is superior to oxycodone PR alone, offering patients effective analgesia while significantly improving opioid-induced constipation.

PMID: 19032132 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

And for a free full-text online (and quite readable) article on the subject, check out "Patient assessment of a novel therapeutic approach for the treatment of severe, chronic pain," Nadstawek J, Leyendecker P, Hopp M, Ruckes C, Wirz S, Fleischer W, Reimer K, Int J Clin Pract 2008 Aug;62(8):1159-67, at http://www.pubmedcentral.nih.gov/art...medid=18705820

There is another drug out there, Methylnaltrexone (Relistor), which is even better than naloxone where, in any dose, it apparently doesn't effect the analgesic properties of the opioid in question. The problem is that it's currently available only for use via subcutaneous injection, although I've heard that an oral version may be available as early as 2010. See,

"Methylnaltrexone: the answer to opioid-induced constipation?" Cannom RR, Mason RJ, Expert Opin Pharmacother, 2009 Apr;10(6):1039-45:

Opioid-induced constipation is a significant problem particularly for end stage cancer patients, methadone users, patients suffering from chronic pain as well as surgical patients. Until recently, there were few efficacious treatment options that did not have significant side effects. Methylnaltrexone is a promising drug for the treatment of opioid-induced constipation. It is an opioid-receptor antagonist that blocks the peripheral gastrointestinal opioid receptors responsible for opioid-induced bowel dysfunction. Due to the drug's polarity, it does not cross the blood-brain barrier; therefore, it does not block the central opioid receptors, thus, retaining effective analgesia. Methylnaltrexone has been recently approved by the FDA in the subcutaneous form for the treatment of opioid-induced bowel dysfunction, whereas the intravenous and oral forms remain under investigation.

PMID: 19364251 [PubMed - in process]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Please note, however, this is a totally separate concept from giving "micro-doses" of an opioid antagonist (1) without the opioid, in order to stimulate the production of endogenous opioids by the body or (2) with smaller amounts of the opioid, the analgesic effect of which is increased or "potentiated" without triggering any side-effect on the GI track, due to the lower opioid dose.

Hope this is helpful.

Mike

thanks mike
that reminds me too,,,ive had about 8 surgerys in the last 5 years,,i used to come out the next day constipated,,bewteen the anesthia and the pain pumps and oral meds [high volumes,,i learned to take stool softners the nite b4 surgery,,,it works every time,,,,

HI Sue,
You have a couple of days to try and get into a relaxed state of mind...I know it is easier said than done, but it can help the healing process.
I'm sorry you had to have surgery after all....the upside of this is that it is happening sooner than later and in a few days it will be behind you...
I's good to know that you various doctors are working as team and undertand your challenges with RSD...
I, too, am grateful for people on the board who *understand.*

We'll all be thinking of you before, during and after surgery :grouphug:
Hope4thebest xo

Dear Sue,

I know this surgery in the near future is a scary prospect for you. It sounds like you have your doctors doing what needs to be done to fix you up and counter the spread of the culprit we all share. I am sorry you have to endure this surgery. Please know that you have friends that care about you and we will be here to uplift you through all aspects of your knee surgery and recovery.

Sending warm, healing thoughts,:grouphug:
Dew
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Sue,

I wonder what they're going to do with your knee? Full knee replacement?

Hope all goes well Wednesday! Keeping my fingers crossed.
Hang in there!

Hi Sue,

So sorry to hear about the need for the upcoming surgery and your injury!:hug: I think it's something we all dread as RSD'ers if we have another injury. In April of this year, I fell and my doctor thought i'd severely fractured my arm as it sweltn up and went blue and black. After several xrays, it turned out it was "just" the RSD and something that i'd have to try and 'deal with' until it got better. I'm glad it wasn't broken as i'm not sure what i'd have done!

It sounds as though your doctor has been pretty understanding which is a good thing - hopefully that will help you and he will be able to come up with a plan ease any additional pain from the surgery!:hug:

You will be in my thoughts on the 19th and I hope all goes well and you have a fast recovery! Remember to take it easy and don't do too much!:hug: