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Sunday, February 26, 2012

SECOND REVISION OF THE KETAMINE LETTER

https://www.change.org/petitions/one-face-behind-rsdcrps-petition-medicare-for-ketamine-for-refractory-or-aggressive-rsd

APPROVE KETAMINE FOR REFRACTORY RSD

Greetings,
I just signed the following petition addressed to: Medicare.

----------------
http://www.youtube.com/watch?v=7GHIQQQcROs

APPROVE KETAMINE FOR REFRACTORY RSD

Ketamine is growing in popularity, see this link for more information on the success that even the FDA has admitted to. Problem is the explosive growth of numbers of patients ending up on Medicare after use of their previous insurance is exhausted. Regular insurances, that's about $2Million in care before it runs out.

Previously contraversial, it is proving less so:

http://rsdfoundation.org/en/Ketamine_Treatment.html

KETAMINE SAVES LIVES AND MONEY!!!!!

COST OF KETAMINE
• A 3-4 day ketamine infusion, on average is about $2-3,000 per day-in hospital;
• at an outpatient or tertiary site, about $2,000 per day.
• One course of 3 day treatment; of which most patients undergo about 5-10 treatments would cost about $15-20,000

(the cost of the surgery, by the way that triggered my disorder WAS $17,500).

If that puts someone who requires well over (keeping in mind, my care for home health is not included as it is yet to be submitted) an average of $150,000/year for life, cost for a series of short-term ketamine treatment, costing in the end maybe $50,000-80,000 offers a shot at a life without the screaming agony of RSD which has even (though not crossed my own mind) driven some to suicide—as children.

Why is ketamine so critical?

Approximately 1.5 million Americans suffer from CRPS/RSD in any given year.

Different kinds of pain in RSD
• In the beginning, the pain of RSD/CRPS is Sympathetically Mediated Pain.
• Every time there is a 3 month delay in the start of treatments (first line) like spinal blocks, the pain becomes more of what is called Independently Mediated Pain (this means it originates no longer in the spinal nerves; but the brain itself.
o 3 months = 25% IMP & 75% SMP (still good chance at recovery with topical ointments, nerve blocks, etc
o 6 months = 50% IMP & 50% SMP (multi-modal therapies must be used)
o 9 months = 75% IMP & 25% SMP
o By 12 months, rule of thumb, almost 100% of RSD/CRPS pain is IMP.

http://www.rsdhope.org/imp--smp--crps.html

My treatment began in the 11th month, when about 92% of pain is IMP and it began with spinal block--as that is what MEDICARE has approved--not things that work for IMP (and far more difficult to treat=aka, becoming “refractory")….”
• And yet, I must be submitted to only Medicare approved treatments for RSD/CRPS
• Which means I did get to “skip to” spinal blocks. They provide about 3 days relief thus far.

My own case in point:
• Over $5K in medications this year already.
• Grand total of over $15K in RSD CARE ALONE.since January 1st of 2012.
• As of the END of Febuary, and my home health hasn't submitted their bill; let's safely say so far my care has reached $10,000/month--and that has been because I have fought like hell to stay at HOME.
• Given now--I have to have a porta-cath inserted before aany
• A hospital may charge $2,000 just to place the catheter in the patient in day surgery.
o This is not incluing fees from the surgeon for the initial consult (probably about $500 for the initial consult). No idea what fees are to actually place the port.

BACK TO TPN:
• Reasons I need the TPN are the following (the symptoms of the RSD being also a portion of it as well, adding to the expense--even though study review after review has repeatedly showed that patients do better at home in recovery from just about anything
Reasons in my medical history that I would likely need TPN:
• Malabsorption
• Surgery
• Reflux
• Malnutrition
• Chronic adhesive obstruction
Grand total in charges are (without TPN): (Roughly, including the $2,000 for each spinal block) are about $10,000/month
Add the TPN and take it up to $16,000 +/month

For a time at least, average cost of home based TPN so that my body can heal from a BLISTER (which is what necessitated the initial home health care when an inept ER doctor “lanced” it and removed the only barrier my compromised body had between the underlying tissue and “the outside world” and now, due to my pain levels, an astronomical weight loss has taken hold and nutritional support is likely to be. Makes me wonder how much that ER doc would have saved in taxpayer dollars by leaving it alone (the usual standard of care—home health services would not have needed to be as intensive—of that I have little doubt)
.
Not to mention my Social Security Payments

Forget about the rest of my medical history for a time, here, but really, what is the cost to my life-when it’s all
• medical supplies
• doctor’s offices
• 24/7 being in constant agonizing pain.

Then someone hands me a pen an asks me to sign the paperwork to be a “Full Code.” Don’t pretend you know what that means.
• Why would I want CPR when my life is spinal blocks to stop the pain—for maybe 3 days, then it rapidly wears off?
• And I am again left in agonizing pain?
• I can’t amputate—not that anyone would do it because it spreads the RSD.
• But if infection in my foot hasn’t gotten the care I insisted upon???
• I did it via a public blog—one that got hits as far as Russia, Italy, Alaska, and so forth.
• When those stats were forwarded, it was then I got home health. I went public on You Tube—only to have to pull everything and privatize it because people saying that I am crazy—that I need to “suck it up.” I took the high road.
• To have consulted my Primary Care doctor for “RSD” an he submits the claim as “Acute reaction to Stress.”

I want to be a full code for that? To be honest, no..

And maybe would allow someone in my condition, at 37, a chance of maybe even returning to work, should the restorative therapies be initiated ASAP, the cost of that is a bargain since I was last employed bias a Registered nurse, ketamine is a risk maybe, but to me—and to Medicare, Mr. President, it’s a bargain—of course, we would need you to meet some of us.

Cost without ketamine is about $150,000/year for life.

I am 37. If my body tolerates this for even 20 years (unlikely),
it will cost Medicare (and face it, eventually Medicaid, over $3 million for maybe 20 years of tube feedings, spinal blocks, growingly expensive medications, procedures, home care-that becomes less likely

As friends and family who help care for the person, fall away from their lives—through understandable exhaustion (physical, emotionally stressful and financial issues), or death of parents who watch their child suffer year after year with no end in sight—for most parents—the pain of a child with RSD is unthinkable.

And children get RSD too. It knows NO BOUNDARIES. Sir, what if a tick bite resulted in agonizing pain—for life—of RSD/CRPS??? Is there not anything you would do to alleviate their suffering? What if you have nothing??? Your choices are:
• Place them in long-term care and walk away
• Pay someone else to watch them and walk away
• Do anything you can to change the existing rules—be it they apply to you, or a family member
• Pay the costs yourself.

Have you ever awakened screaming because when filling out paperwork, a pen slipped underneath you and caused such a bruise that the pain kept you from even being able to urinate for 2-3 hours. What is the cost of supporting someone lifetime on Medicare with RSD? Roughly what mine is.

EFFECTIVENESS OF KETAMINE:
Case notes of 33 patients whose CRPS pain was treated by the inpatient administration of a continuous subanesthetic intravenous infusion of ketamine were reviewed at Mackay Base Hospital, Queensland, Australia.

A total of 33 patients with diagnoses of CRPS who had undergone ketamine treatment at least once were identified.
Due to relapse, 12 of 33 patients received a second course of therapy, two of 33 patients received a third.
• There was complete pain relief in 25 (76%),
• partial relief in six (18%),
• no relief in two (6%) patients.

The degree of relief obtained following repeat therapy (N=12) appeared even better, as all 12 patients who received second courses of treatment experienced complete relief of their CRPS pain. The duration of relief was also impressive, as was the difference between the duration of relief obtained after the first and after the second courses of therapy. In this respect, following the first course of therapy,
• 54% of 33 individuals remained pain free for 3 months or more and
• 31% remained pain free for 6 months or more.

^ a b Goldberg ME, Domsky R, Scaringe D, et al. (April 2005). "Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome". Pain Physician 8 (2): 175–9. PMID 16850072.

:
OTHER OPTIONS FOR CRPS/RSD?
A spinal, or even a stellate ganglion bloock is going to help this? Or a spinal stimulator in the "new generations? Including the trial and implantation? Approximately $60,000 for the implantation! "Uncomplicated" maintenance of a SCS is about $7,000/ year. Complications include:
• Bleeding
• Allergic reactions
• Paralysis (PERMANENT = VERY costly to patient as well as Medicare)
• Numbness (potentially permanent)
• Consistent pain around the implant area
• Battery failure or leakage
• Post surgical "soreness"
• Tolerance to stimulation secondary to scar formation over time.
• Malfunction of the device
• INFECTION in someone who is already potentially medically/nutritionally compromised
• "Unsatisfactory" placement of leads
This many complications--"uncomplicated seemma unlikely. But it's being shoved at me--and hard.

Because an intrathecal pump = narcotic pain management.

Having looked at this option, and being a MRSA carrierl if this introduces MRSA to my spinal cord? I am in trouble, if not just plain dead. Spinal stimulator, I think for me, ketamine, although with it's risks-would be safer--for ME. Not available.

Sorry (often), ketamine is "non-formulary" or I get what I call "assistance with being priced out and I cannot even get someone to tell me how much even topical gel of ketamine/

COSTLY TO MY FAMILY & FRIENDS IF I END UP DEAD, TOO.

Waiting for procedures you pray will give you a chance even for a few days of SOME reprieve of YEARS of unrelenting pain. You can't go to the ER-why? Because the nurse checking your pulse hurts; THEN…they want to squeeze your arm for a blood pressure—for those who have RSD “full-body” I can’t imagine, as I am fortunate enough that the Stellate Ganglion Block was effective on my “upward spread, and the dystonic spasm of my hands and forearms (see video)

The ER doctors exam throws you into a cresendo of pain that many (not all) cannot comprehend.

Let your mind go back to your hernia surgery—or appendectomy, knee surgey—maybe to the last time you broke a bone; just go back to the most painful moment…. Get a calculator—to not multiply times ten, but a hundred

You are getting close to RSD. Many pain doctors do not use the 1-10 scale to rank the pain of RSD/CRPS. Try the McGill Pain Index where RSD is at the top. Want to fully comprehend it?

www.eorthopod.com/node/10966

ONE VERSION OF THE McGILL PAIN INDEX

RSD, aka, "CAUSALGIA", AKA CRPS IS 42-NOTHING GOES HIGHER YET

This is how RSD feels:
Someone has taken my leg of the most painful moment right after my hip surgery, and they poured my leg with a lighter fluid, and dropped a match. But realizing the accident, then in an effort to put the flames out, they grabbed a BUCKET OF HYDROCHLORIC acid on you instead of water, then your pain explodes like nothing you’ve known—and Ladies of Congress, it IS worse than childbirth, and you can’t eat, half the time keeping your medicine down is what you focus on. That becomes your food. The acid reflux requires four or more doses of Priosec—now your problems begin. Right now one dose of the medication approved by my Medicare plan for acid reflux is $1,200/year. We could add that to the tab if we want to “Nickel-dime us all to death.”

Will what I need be covered by Medicare or Medicare Part D?
Many times, such as the diazepam I need not for anxiety, FOR MUSCLE SPASMS THAT ROOT YOU WHERE YOU STAND—you have $5 and the bill is $24.

You often walk away with maybe half of what you need! And when completely dependent on Medicare?

RSD-appropriate care is a thing of the past.

You are stuck on Social Security; at the mercy—of the system.

Your "supportive friends" drift away..one by one. The only ones are at your fingertips-the few hours a day you can stand the light o the computer screen. You have one hand flush pink and warm to the touch, and in briefly touching the other, it feels like ice, is white as snow-but feels like fire. Ketamine treatments in other countries has been a cornerstone of treatment.

Even in the US; as usual the "Have's" have often got access to some FORM of ketamine. It isn't for everyone, not all are canidates, but even a year of RSD treatment is expensive when going by current protocol approved by medicare. Why not give us a shot, us "have nots" the same shot-equal access to this potentially life changing treatment....Sign this petition, please, and DEMAND as a US citizen, and a REGISTERED VOTER; that mr. obama and our congress give us the equal access--rather than forcing us to sell every last possession. I am not asking for Coma treatments. And let's point out a lifetime of remission from Ketamine treatment is cheaper than expensive Spinal Stimulators, and jabbing needles into the spines of those already in compromised health. Bring RSD/CRPS patients out of the dark into the LIGHT--Please: give us a chance, we have suffered enough,

To families and friends:
http://www.rsdhope.org/to-the-families--friends-of-rsd-patients.html

What Many Pain and/or RSD/CRPS patients would like people to know:
http://www.rsdhope.org/what-would-you-like-your-family-to-know-about-crps.html

EQUAL FOR THE "HAVE NOTS!!!!"

It's one more CHANCE we could have at not A LIFE, but LIFE.
----------------

Sincerely,

[Your name]

Wednesday, February 22, 2012

Videos on RSD

I hope that others are going to keep an open mind that Ketamine is not available (or affordable) to everyone with RSD. LOOK AT ME. Look beyond the end of your own nose.

Talk about hell.
Talk about full-body RSD in a state where no form of IV ketamine is available-the best thing you can do is smoke your meds--if you can find the cash to do it

I tried a TENS unit, fucking hated it, and ain't going down the road of some damned thing that puts out 100 times the fuckinng outpuut and if Ii get a lead slippage, Murphy's Law states it would be when the doctor is on weekend, and I would get seen in oh, like maybe a week, or two-possibly three.

That was a no-brainer for me. Thanks, but no thanks.

I went to another site, all I did was open a thread--as many others have: In a "Need to vent" kind of thing, and I'd been there before, and next thing I know, whamo this guy--granted who's (grown) daughter (at his expense--they sold just about everything they owned to pay for it) made a very miraculous and incredible recovery-and a mite jealous? Yeah I am. Who wouldn't be when I am headed down the same road she was: constant headaches, skin sores--and thanks to lack of family support, and understanding that one week you may feel your heart breaking when words like "adult family home." Or Skilled nursing. I am not in any way suicidal but the thought of going somewhere that a fish tank is the closest thing to adult conversation. If anyone cleans it. I would rather die.

But some days I don't care~~pain being all that's on my mind; I can't eat or sleep; much as I'd like to, my tiny laptop being my one and only (best) distraction. Some days I feel that acidic burn on my whole leg: the tears won't freaking stop dammit!!! I want to smile. Some days just trying to take a real and true snapshot, where I don't take fifty before I catch half a smile where you can't see tears--or me choking them back

Why?

Where I am at? My own body is wasting away...never thought I'd have to fight so hard to gain weight back, and he's set up shop--it feels to some of us; as "Resident RSD Expert #1/Ketamine is the "only way." It can scar you permanently with memory loss~oh, but life sucked, so just forget it anyhow? It can cause serious psychiatric and "behavioral issues--awww, who cares: I was crazier than a shit-house rat before? Yeah, I am bitter: Every morning, my first conscious thought is PAIN, every night--if I sleep; my last conscious thought is pain.

And my parents aren't going to take a second or third mortgage on the house to relieve it. They run from it, and that hurts too!!!! If I sound better one day (usually because I've just taken something. My apartment manager has more compassion. You idiots, my life is never going to be the same.

PEG tubes. Tube feedings, TPN and lipids. 66 pound weight loss in four and a half months. Dental problems because anticonvulsant medications for nerve pain-into the thousands. And because of the unwanted, undesired weight loss.

Or to publically presume that in the US, we are backwards on ketamine; but I am in fact, subject to Medicare regulations, which equals for me: NO ketamine that they pay for. I live in a rotten neighborhood which wouldn't so much as sell a chocolate chip cookie to help me even get the topical--heck, people won't open their doors (rightfully so--safety issue where I live).

And those who are better off don't slow down around here--usually they speed up and don't go through any alleys. No bake sales or fundraisers to send a person for medical treatment.

I've only ever asked people to not presume they know what medications I am on, nor to condemn me for making choices that they do/don't. I had mentioned that my port goes in-they may have to use it part-time for IV nutrition. OK, I worked in healthcare: I know what comes with that--and there I was getting judged for it--and I would try ketamine--but my family is 100% unwilling, much of the time, to bring a gallon of milk--and yet, that is not the reason I have lost all this weight.....

I was simply asking for prayer, and if failing that, good wishes--I couldn't get it from someone I had been friends with, and publicly, he questioned my motives ("I'm not sure what you're looking for, but you might try hypnosis (guess what? I tried-couldn't focus and halfway through, was getting physically ill in the poor fellow's trash can) and goes on to say that otherwise MY daughter did it the ole [sic] fashioned way with ketamine.

YOU STUPID SOB: Why the inequality? Hypnosis for me cuz I'm 'poo folk, and you have a home to mortgage to GET Ketamine--whilst you still get to compare your perfect child to me?

We are not related
I am not, thankfully, especially if you compare your one child against everyone elses--who have used real traditional methods such as:

Physio, Physical, and hydrotherapy--and used them successfully

You only taught your daughter about instant gratification. And to put her life on the line to get it. I am in the situation because some ER doc doesn't know to properly care for a blood blister.

Adults can be just as cruel as children, if not more so. I am glad I'm not his child if he compares everyone to her as the "one and only."

Granted, many parents-myself no exception see their child as not an extention of myself; but one to teach how to make their way in this world. I leave my son (also now grown) out of the spotlight--for this reason.

Not on CNN.

Many prefer privacy--not the spotlight-and only document and share their experiences so someone else will benefit: if not from awareness.

You will receive no further attention from me--you have stolen the spotlight already--btw: plenty of people already think you're an ass anyhow

Tuesday, February 21, 2012

MY DISABLING CHRONIC AND PAINFUL ILLNESS....IMAGINARY MEDICAL EXPERTISE!

My gratitude list:

My pain, right now, is only an 8.5/10
Help tomorrow that I get a shower
There are apartments, albeit in Darrington-it is sort of close to Arlington (?)...sort of, just gotta see the map
It's a quiet, country type of location
A studio is not out of the question, even if it's not right here
I have good health insurance w/o further talk of anything other than living on my own.
My finances are okay;
Hit catastrophic cap for meds = no copay
I did find Dr. N & Dr. L
Website is going good
Bipolar in full remission for 3 years now.

Okay, I have a good start for the positive thinking. Tonight, before bed,

I WILL complete at least one housing application.

From here out, if all I do to blog is my gratitude list; and set GOALS (even if they don't all get done so be it--for that day !!!!

Goals for today:

~~WORK on laundry while in between loads (done)~~
Cruise Craigs List for studio apartments and Rooms for rent. (I am wiped out & too damned depressing-want to stay positive
~~Do my "Gratitude List-done~~
~~Email out petition *** See corner to your left if you are in the US and are willing to sign~~
~~Offer John my coffee table~~

4 out of 5-not bad. That is a 80% success rate, and I worked on my webpage!!!

Got rid of the coffee table too. Splitting headache folks; Goodnight!

Here's something else to read:

Monday, February 20, 2012

SWIMMING ALONG, AND THEN WHAMO

One day swimming along in hydro--had to fight for that too with the help of a good friend. Exhausted constantly, but I was gaining ground:

My tolerance was improving; my love for the heated pool had me wishing I could go every day; but at my pace, I knew that though I was, as they say, gaining ground; losing weight and maybe, just perhaps, gaining ground physically, but things like

sensitivity to noise
sensitivity to light
concentration difficulties
losing track of words
losing track of time, dates, even with a datebook, aka, my "Swiss-cheese brain-it sounds funny, does it?
Well at 37, feeling like you have Alzheimers is decidedly not funny!

Do I look amused??????

This is after a month in bed from an ER doctor at:

Swedish Mill Creek ER

Who:

The HOSPITAL
The "physician" herself
And her damned MOTHER, forget her oh yeah:
MED school, which one? Cheerios or Cracker Jacks?

All failed me by not teaching her to take care of a fucking blood blister-

Gee, Thanks!!!

Get the damned camera out of my face-NOW, please!!!!

I will break it for you....

Now, leave me alone---and don't worry, I will not be returning!

Saturday, February 18, 2012

MY HEART IS FULL

My heart is full.

So many are praying for me that I don't don't know!!!!!!!!! At least not in person. In pain--we know each other well.

They all put my family to shame and rightfully so--they should be ashamed of themselves! I can't believe the number of times I held a hand while it's owner passed away to be with God, and the son or daughter they called for until the end, that I answered for would show up, on the phone to an estate attorney to "see what they got.

Finally, part of the reason Ieft--I couldn't take it anymore.

I've lost my job for going over the head of the medical director-with a man dying of brain cancer--who he'd PERMANENTLY labeled a "druggie" with a week to live--all clinical signs pointing to agonizing pain; and his wife and children beside themselves. I decided my first duty was to him, to hell with a job like that.

Hospice orders trumping all others, I got an order from them for morphine and gave it. His wife was so relieved, she said she wanted "only me" to care for him. I told her gently I was "fill-in help" but to ask for the Morphine anytime, heck, demand it if she had to, and once she understood, she nodded, realizing my neck had been on he chopping block. I didn't care, I was so new there, I didn't bother putting them down.

But your prayers, even an offer for help have been truly touching. It's felt for so long like no one cared, that when your own family does "selective reading (as opposed to facts) and refused to watch any videos I may send.

They claim to have; but over time--it's like with friends: you know who those are--and you know when you've been lied to. My friends here may be new,but they also seem to be true; I made this for everyone yesterday.

Cuz what is to follow on RSD/CRPS isn't quite as nice...shall we say; but I like to start out on the positive:

Well, I can't find the video that was here, which really sucks. But I made this as an "RSD TRIBUTE" only God knows when, we'll see how it skips off to the neverland of what videos of MY OWN I can frigging upload and repost and post and freaking repost. BUT not letting negative in here!!!

Sunday, February 12, 2012

Written information on Portacath insertion-since I am getting one

Ok, straight up: I do NOT have cancer--what I have is very shitty veins--for a multitude of reasons, but the main two being MRSA and Vancomycin.

Since I began treatment with a pain doc/INTERVENTIONALIST, I am going to be having procedures, which to be perfectly honest, I believe will terminate in an intrathecal pain pump. My experiences with SCS and TENS units, and the like have been disasterous, and to pacify the doctor (and my insurance company) I will also in all likelihood be getting TPN/lipids through it (which I believe leaves us with multitudes of better options, but in respect to those who do not know what these things are; here ya go:

Portacath Insertion

Patient Information By Dr Eisen Liang

Please read this leaflet and discuss with your family. Keep this leaflet handy, you might need to refer to this after portacath insertion.

Why portacath?
What is a portacath?
How is a portacath used?
How is a portacath implanted?
What preparation is required?
What are the aftercares required?
Why the right internal jugular vein is preferred?
Why is a portacath implanted by interventional radiologist?
What are the risks of portacath insertion?
What are the potential problems with port usage?

Why portacath

A portacath is an implanted venous access device for patients who need frequent or continuous administration of chemotherapy or other therapies as determined by a physician when peripheral access is not feasible or would cause the patient undue distress and/or cost the doctor doing a series or a procedure followed by medication treatment (not necessarily chemo) afterwards. Some drugs used for chemotherapy are often toxic, as can be antibiotics, for example, Vancomycin is rarely given via peripheral line for this reason, as it is also painful; and can damage skin, muscle tissue, and sometimes veins.

They often need to be delivered into large central vein where the drugs are immediately diluted by blood stream and delivered efficiently to the entire body.

Cancer patients also require frequent blood tests to monitor their treatments. For patient with difficult veins, (such as myself!!! God, let them leave it in!!!!) it can be used for withdrawing blood for blood tests.

Using modern technique, the portacaths we have inserted are highly appreciated by patients, oncology nurses, emergency nurses, and doctors. The procedure is easily performed with minimal risk and pain, a very small price for the convenience and safety months and years ahead.

What is a portacath?

A portacath consists of a reservoir (the portal) and a tube (the catheter). The portal is implanted under the skin in the upper chest. It may appear as a bump under the skin in thin patients, less visible in patients with thicker subcutaneous fat. The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). Since it is completely internal so swimming and bathing are not a problem. The septum of the portal is made of a special self-sealing silicone rubber. It can be punctured up to one thousand times and therefore can be used for many years.

How is a portacath used?

A nurse can locate the portal between his/her fingers. To administer treatment or to withdraw blood, the skin over the port is sterilized. The port is accessed by puncturing through the overlying skin with a Huber needle. The needle is specially designed so that it will not damage the silicone septum. Blood is sucked back to check if the port is functioning normally. Next, the portacath will be flushed with saline. Then, treatment will begin. After each use, the port is flushed with saline followed by dilute heparin to prevent clotting.

How is a portacath implanted?

The procedure is performed under local anaesthetic, with the aid of imaging guidance (ultrasound and X-ray) in the angiography suite of radiology department. The actual procedure takes less than an hour. An intravenous sedation is given to make the local anaethetic injection less painful. There will be a skin incision 3cm long on the chest wall for the port pocket and a 5mm incision in the lower neck to enter the vein. Absorbable sutures are used for the chest wound and are buried under the skin. For the small neck wound, sutures are usually not required and the wound is closed with Steristrips (medical sticky tape).

Typically you can go home two hours following the procedure, when you have recovered from the sedation. You should arrange someone to take you home, as you are not allowed to drive or operating machinery for 24 hours.

What preparation is required?

You need to avoid solid food from midnight. Clear fluid and medications are allowed up to the time of procedure. If your are on aspirin, Warfarin or plavix, check with your own doctor if these can be stopped for 5 days. You can resume these medications the day after insertion. Insertion is best delayed if you have active infection.

What are the aftercares required?

For 10 days you need to keep the wound clean and dry, and to avoid strenuous activities of the upper limb and chest wall. If the port is not used within 7 days, you need to return to us for a wound check and dressing change. Otherwise the oncology (or in my case, the pain center) will access the port and change the dressing for you. If you will commence therapy within the next two days, please let us know so that we will leave a Huber needle catheter on the portal ready for immediate access; the home health IV/central line nurse will apply new dressing when you finish the IV therapy session.

Any issues associated with the wound healing, contact the physician.

When the portacaths are no longer used, it need to be flushed with saline and locked with heparinised saline once per month to keep it patent.

If the portacath is no longer required, it can be removed by the physician. The procedure is performed under sedation and local anaesthetic, similar to insertion.

Why the right internal jugular vein is preferred?

The vein is large and superficial, easily visualized with ultrasound. It runs a straight course towards the right atrium. This vein has the lowest risk of complication associated with insertion and subsequent usage. The left internal jugular vein is the second best.

Why is a portacath implanted by interventional

radiologist or general surgeon?

Application of modern imaging technique has made portacath insertion much safer and quicker. The patency of the vein is checked with ultrasound. The best site for puncture and the course of the tunnel are selected using ultrasound, avoiding other veins and arteries in the area. The actual pucture is performed under real-time ultrasound guidance, thus avoiding injury to the adjacent artery. Once the vein is puctured, a guide wire is inserted and its position is checked under fluoroscopy (X-ray). The length of catheter required is measured with fluoroscopy. Finally the function of the portacath is checked by injection X-ray dye.

What are the risks of portacath insertion?

With modern imaging guidance, the risk of the procedure itself is minimal. There is theoretical risks of blood vessel injury, wound infection, bruising and haematoma formation, and the very remote chance of allergic reaction to the X-ray dye and drugs used during the procedure.

What are the potential problems with port usage?

Months after insertion, rarely the catheter can be blocked with clots and tissue growth (fibrin sheath). This can be rectified with clot dissolving agents (urokinase). Also very rarely the portacath can be infected. This can be recognized by skin changes overlying the portal. Skin changes can also be due to chemical irritation if chemotherapy/therapy agents if the Huber needle tip is not completely within the portal. Sometimes the port is thought to be infected when you show signs of severe infection yet no other source can be found. An infected portacath need to be removed.

SOURCE: http://www.sir.net.au/portacath_pi.html

WRITTEN INFO ON A PORCATH-SINCE I AM GETTING

Ok, straight up: I do NOT have cancer--what I have is very shitty veins--for a multitude of reasons, but the main two being MRSA and Vancomycin. The reason I am having the port is because they can't ever find an IV, and it's not like treating someone with about 90%+ I am in for the long haul!

I began treatment with a pain doctor/INTERVENTIONALIST, I am going to be having procedures, which to be perfectly honest, I believe will terminate in an intrathecal pain pump. My experiences with SCS and TENS units, and the like have been disasterous, and to pacify the doctor (and my insurance company) I will also in all likelihood be getting TPN/lipids through it (which I believe leaves us with multitudes of better options, but in respect to those who do not know what these things are; here ya go:

Portacath Insertion

Why portacath

What is a portacath?

How is a portacath used?

How is a portacath implanted?

What preparation is required?

What are the aftercares required?

Why the right internal jugular vein is preferred?

Why is a portacath implanted by interventional

radiologist or general surgeon?

What are the risks of portacath insertion?

What are the potential problems with port usage?

WRITTEN INFORMATION ON PORTACATHS-SINCE I'M GETTING ONE

Portacath Insertion

Why portacath

What is a portacath?

How is a portacath used?

How is a portacath implanted?

What preparation is required?

What are the aftercares required?

Why the right internal jugular vein is preferred?

Why is a portacath implanted by interventional

radiologist or general surgeon?

What are the risks of portacath insertion?

What are the potential problems with port usage?

On HIATUS

I am on hiatus today.

Feel shitty; right leg is cramping like mad. I want to scream, and I need to wrap myself in low heated electric blanket hopefully it will stop the screaming pain.

Some more RSD Photos--I do have hand involvement, so they'll get to my neck; but the lower body is way worse off.

These are from this month--at least Lady luck left my dominant hand alone-so far: