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Posted By : Veinpain - 1/26/2017 11:44 AM
In September 2014 I received an abdominal CT scan with an Omnipaque Injection.
Immediately after being injected I felt a severe burning in my lower abdominal region.
I was wheeled out and my blood pressure increased and I began to develop shaking chills.
I was released home and told my pain would diminish. Within hours I had full body burning
and altered skin sensations. paresthesia. I went back to the ER with full body burning, kidney pain, and
a severe burning in my urinary tract. My blood work showed in vivo hemolysis but the
physician said my blood work was normal. I was chemically burned internally by the Omnipaque.
It was a toxic substance that damaged all my superficial blood vessels. I went into a burn shock
with full body autonomic neuropathy and I was fighting for my survival. I was home for two years
with chronic blood loss, excruciating nerve and vascular pain, aching ,burning, throbbing , cramping, tingling, burning, and numbness throughout my entire body, limbs, torso, back, neck, ears, genitals, urinary tract, fingers, toes, palms, and feet. My nutrition increased dramatically at this time for my increased need for nutrients for healing. I was developing blood clots.
I had full body non pitting edema. I suffered profuse night sweats for the first six weeks after the injection. Following, I could no longer regulate my body temperature. My skin was ice. I did not sleep
for almost two years. Physicians turned away and turned backs because there are no biomarkers for vascular
injury. The FDA is approving all the contrast dye for intravascular injection with no biomarkers.
I received no help, no pain management, and no physical therapy. I was out of work and still am
today and I thank god for my mother. My mom was witness to all the ER visits and physician visits.
I was treated worse than a lab rat. I still suffer with full body chronic pain on a daily basis.
I still suffer with autonomic dysfunction. At 15 months I was still in lactic acidosis, tachycardia of 108 and my shock index was 0.9 but none of the physicians were honest. They all turned back and failed to help me.
I want to put my story out there to warn people about the dangers of contrast dye.
If you read the drug facts it states it can cause injury to organs or vessels. I would
also like to know if blood vessels fully heal or do they heal with scar tissue. I will be
going for an ultrasound soon to check my vessel walls. I finally found a physician willing to help.

Posted By : straydog - 1/26/2017 7:51 PM
So sorry to read what you experienced. Hopefully your new dr will be able to help you. It is hard when drs cannot give us the answers we need. Sometimes there are no answers.

The contrast dye has been used for many years & not everyone has the reaction that you did. I have had contrast many times over the years & fortunately never had any issues with it.

I hope you can get some answers. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 1/27/2017 12:33 PM
I can appreciate the horrors of your experience with the Omnipaque.

I have had demonstrated sensitivity to Omnipaque that has been formally labeled as an allergic response.

My reaction to Omnipaque has been similar to yours in that it has a diffuse adverse effect on my veins and smaller capillaries. The effect has been the actual rupture of smaller surface capillaries, noted as "pico-vascular eruption" on my medical records.

It appears as pinpoint-sized red spots on my skin, thousands of them. Face, arms, legs . . . the highest concentration, however, on my abdomen and pelvis.

It has occurred on two occasions, both treated as an emergency with prompt IV steroid bolus and benadryl + IV fluids to help flush the omnipaque from my system.

I am never to have CT constant again. I am only to MRI imaging.

I am sorry for the suffering that you have endured and the abandonment of medical support. Personally, I have found that when a gross mis-step in care has been made or when a situation is not easily ascribed to a known cause, that medical personal can distance themselves by removing themselves by "walking away" from further involvement. It is hard to admit a mistake in the realm of medicine.

I think you have made the right choice to start anew with a new physician, a new set of eyes, and a new experience. Make the best of a less than ideal situation.

I have been harmed by medical care that went astray. I have never sought remedy through malpractice . . . it would have caused me more stress and heartache. That I have been harmed by medicine in one of the primary drivers as to why I participate on this forum and on a forum for Addison's disease - the hope that I can help someone, anyone, gain in knowledge and awareness the body and to be able to advocate with medical providers in the quest for appropriate and meaningful care.

I hope that the inflammation of your vascular system eases over time and that the residual emotional burdens disappear into the background of your subconscious,
- Karen -

Posted By : judylissette - 4/13/2017 4:41 AM
Veinpain, I had a ct scan a week and a half ago and am going through almost the same reactions. My doctors have been no help. I have gone to the ee four times since and my doctor says I probably have fibromyalgia. Mind you, I had no pains or vein pain before the ct scan. What do I do? I am at a loss. I have no idea what to do to make this better or what specialists I should see. I am in Florida. Please advise.

Posted By : (Seashell) - 4/14/2017 7:46 AM
From my experience with a reaction to IV contrast, you are going to be hard-pressed to find an MD who will validate the full range of effects that you are experiencing.

If you can find a physician willing to place you on a course of corticosteroids you may find some relief in the inflammation that is affecting the lining of your veins/arteries.

I only agree to a CT scan now based on well established need and/or benefit to be derived. And I always have pre-procedure medication dosing of Benadryl + prednisone as a pre-emptive.

I am sorry that you are going through this.
- K -

Posted By : judylissette - 4/24/2017 6:10 PM
Thank you, Seashell. Veinpain, how are you feeling these days? Did the specialist find out more about your veins? Is there a medicine that helps relieve somenof your symptoms?

Posted By : judylissette - 4/25/2017 9:40 PM
Seashell, what contrast dye did you have an allergic reaction to? Did you ever fully or partially recover? It has been three weeks for me already since the reaction.

Posted By : (Seashell) - 4/26/2017 9:56 AM
I chronicled my reaction to Omnipaque IV CT contrast in a post writing earlier in this thread. Look for my earlier post for details.

Basically, my sensitivity-alergic reaction was capillary "leakage". Thousands of small red spots appeared on my body, representing capillary hemorrhage. Micro-capillary bleeding. Thousands (and I mean thousands) of bright red spots the size of a pencil tip - my torso was more affected than my arms or legs. I looked as though I had extensive chicken pox. That's the best description. The effect was evident with 15 minutes of the infusion.

I was given dexamethasone and Benadryl, as first line intervention.

My medical record has been red flagged that I am never to have Omnipaue. Never. Next time the vascular hemorrhage might be life threatening.

I have not suffered any long term effects. Thankfully.

Posted By : judylissette - 5/26/2017 4:06 AM
Veinpain or whomever was online last for her, would you please let me know what happened? I need to know what steps to take next. I have an appointment with the Mayo Clinic on June 1 and 2, but my circulation has been poor and my fingertip veins are turning bluish purple. Veinpain, did you experience this? Any suggestions, please?

Posted By : (Seashell) - 5/26/2017 2:55 PM
I would not panic . . .

Your fingertip discoloration may be a form of Raynaud's Syndrome. It is a phenomenon, often auto-immune in origin - that involves vasoconstriction of the smaller capillaries, generally affecting the distal extremities (hands and feet). Changes in outside temperature can heighten the effect.

Keeping your hands in a pair of soft mittens is a good way to minimize Raynaud's. So, too, keeping the feet in soft, wool socks (seamless socks are best to minimize additional irritation).

It sounds as though you have had either an allergic response or a heightened sensitivity to the IV contrast.

I also have a known allergic response to IV contrast (Omnipaque).

Your best strategy moving forward is to make sure that the contrast sensitivity/allergy is well noted and HIGHTLIGHTED on your medical record.

The problem is that the IV contrast that you had infused cannot somehow be suctioned out of your body.

People who have the once a year infusions for osteoporosis have also experienced severe adverse effects due to the high concentration of medication in a once a year infusion. Acute kidney failure has been an increasing occurrence and the FDA has placed "black box" warnings on the once a year osteoporosis infusions.

I offer this as an example of other IV infusions that can go amiss once the medication has systemically traveled through the body.

I do not know specifically what the physicians at Mayo can offer you . . . I was placed on dose of daily corticosteroids and Benadryl after both of my IV contrast reactions. You are now significantly further out in time that I do not know if corticosteroids + Benadryl would have any advancing benefit.

The reaction to the first round of contrast was felt to be a sensitivity. My second reaction was worse than the first, prompting the radiologist to surmise that the response is more an allergy/antigen response. It has been recommend that I avoid any further CT contrast.

You may also be advised to avoid any future IV contrast. Or, if it is a necessity, to have the rate of infusion slowed considerably over a longer infusion period + have one-on-one registered nursing to monitor you closely for an allergic response.

As far as imaging, MRI remains an option for me if I have future need for soft tissue imaging.

For me, the lesson: All medications have inherent risks.

With physicians using CT and MRI imaging like drinking a class Kool-Aid, it is important that we, as patients, take pause and make sure that we are fully aware of a test's potential risks and make sure that the test is necessary.

I hope that Mayo can provide some insight into the lingering and distressing side-effects that you are experiencing. Do not be surprised if you hear from the Mayo consultation: "I don't know . . . I have never heard of anyone having a similar response." There is a self-protective mind-set in medicine and a failure to admit mistakes and missteps. Blaming the patient is an all too frequent card played by physicians/hospitals to limit exposure to litigation and arbitration.

Most likely and most hopefully, your ebbing symptoms will reduce gradually over time.

- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : judylissette - 5/26/2017 3:39 PM
Hi Karen, I appreciate your help. My toes and fingers have been feeling numb, the discoloration is now happening, and I have odd, sharp pains in different organs, on and off. I also woke up this morning with pain in one of my hand veins and a circular mountain of tough, discolored skin was sitting atop it. Fortunately, the toughness of the skin has diminished over the past few hours, but it is still thick and discolored. My arm and leg veins hurt pretty much all the time, plus they are becoming more visible. I had my leg veins looked at by a cardiologist via ultrasound and he said the vein valves in my legs are no longer functioning and my circulation is very poor now. He suggested an ablation on my leg veins. The crazy thing is my arms feel like that too. My face feels tingliness and numbness on and off and I have headaches on and off.

It's been hard as I have a nine month old son and a husband and I am trying to do what I can to get through this. I don't even want to touch medicine because after the reaction, I also ended up having a bad reaction to Ibuprofen and aspirin. I try keeping my blood thin with turmeric and fish oil with the hopes that a clot does not develop seeing as how my circulation is poor. My cardiologist won't be around until next Tuesday to speak to. By the way, with Raynauds, do the veins/arteries remain visible or do they go back to normal after the temperature is warm? I try not to be in the heat too long as I have also lost my ability to sweat (and I live in Florida right now), so trying not to overheat. My blood vessels feel so sensitive and fragile. Whenever they hurt, they become darker.

Not sure what Mayo can do, but I'm truly hoping they can help out in some way. I am also seeing a functional medicine doctor who is testing me for a lot of stuff to see if we can properly detox me.

How long do you think the Omnipaque will linger in my system? I did have Benadryl and steroids after the reaction, but had to stop after almost a week because it was hurting my stomach and esophagus so badly. My white blood cell count, hematocrit, and hemoglobin are pretty low, but my red blood cell count is normal. However, my monocytes appear to be high. I feel I have to continue being proactive or else I will fall to the wayside and I cannot afford that with having a family.

Posted By : (Seashell) - 5/26/2017 5:10 PM
Your reaction to the Omniplaque does sound severe in the recounting of your symptomatology.

You have my sincere compassion. Yours is a difficult situation, for the reasons that there is little physician acknowledgement and understanding of the sensitivity/allergic reaction and there are few options for ameliorating treatments.

The problem, sincerely, is the the contrast medium once infused and systemically distributed through the body cannot somehow be removed from the body.

The options are supportive care (basically, medicationsnor modalities to minimize distressing symptoms) and detoxification support (processes that aid the body in metabolizing and eliminating the infused contrast).

You mention that you were on corticosteroids and Benadryl but discontinued due to gastric irritation.

I would discuss with Mayo reconsidering both at a lower dosing. You were obviously on a dose that was too harsh for you. There is no set or known steroid dosing for an allergic response. Dosing is very much individualized. I have been on continuous corticosteroids for some 25+ years and feel that I have experienced almost every know side effect of steroids. It is we'll know that steroids are GI irritating, thus the usual counseling that steroids be taken with food to buffer their harsh effects. Certainly, you and Mayo can re-visit various steroid dosing scenarios. For example, I take my total daily dose spilt into 6 small doses spread throughout the day. You can look at using liquid prednisolone. I use a small oral syringe and dose 1 ml at a time between my cheek and gum tissue to avoid GI upset. You can also consider IV dosing if steroid a few times a week using dexamethasone at a local hospital infusion center (where cancer chemotherapy patients receive their infusions).

Honestly, you are going to need corticosteroids in the short term to dampen your body's immune response that is in overdrive.

Other options would be methotrexate (typically used for rheumatoid arthritis) or off-label use of any of the medications used to treat auto-immune inflmmatory conditions (ex. Remcade or Humaira). The caution would be presenting an additional IV infused medication where you have history of an acute sensitivity reaction (to the contrast). If you go with an IV auto-immune medication (Remecade, Humaira) be certain that you start with only a small fraction of the typical dosing and that it is done in a hospital setting with RN monitoring. If you have an acute reaction, you want to be able to stop the infusion. If you have a delayed reaction (say a reaction that only becomes apparent 24 hours later) you want to make sure that the doses amount is relatively minor in amount.

Keep written notes of your meeting and consultation with the Mayo physicians. Ask for copies of all relevant lab work and other testing. This information is yours. You have very write to have copies for your personal reference and filing in a 3-ring notebook.

I have had the misfortune of numerous mis-diagnoses and missteps over the years. This is unfortunately not uncommon when the disorder is rare or rather unusual. You are trending a health challenge with little know precedent or clinical studies or treatment guidelines. You are going to need to be prepared to be your own best advocate and advisor. Read and learn as much as you can about immune system condition an where the immune system goes on overdrive. For in reality, the sensitivity/allergic response that you are suffering from has many similarities to immune system dysfunction that can be helpful in creating options for treatment based on you and your uniqueness.

The teaching: I doubt that Mayo will have a ready plan of action to dispense for you. Rather, it will be a process of mixing and matching medications and methodologies to ramp down inflammation and an immune system in overdrive.

Keep in touch. I care.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : judylissette - 5/26/2017 6:18 PM
Thank you for taking the time to answer, Karen. I will keep all of this in mind and good idea on keeping track of everything plus the note taking! I think a 3 ring binder purchase will definitely need to be soon in session! I've accumulated way too many documents in the past (almost) two months!

Posted By : judylissette - 6/1/2017 11:17 PM
Hi Seashell, so as expected, after Mayo did their neurology testing for EMG, it turns out this is not a nerve issue or neuropathy. They are referring me to a Mayo cardiologist. It might be a while before I see him or her. I did speak with my cardiologist regarding today's visit and after some extensive talking, he thinks it may be Buerger's. I have to wait until Tuesday of next week.

Posted By : judylissette - 6/2/2017 6:43 AM
Karen, I am reading up on detoxing more profusely. It appears that iodinated radioactive compounds embed themselves into tissues for a very long time, right? So with knowing this, I realize now why I felt pain in my throat after getting an xray done of my neck by my chiropractor. It is probably also in my thyroid! Please read about this detox here: Let me know what you think.

Post Edited (judylissette) : 6/2/2017 6:54:37 AM (GMT-6)

Posted By : judylissette - 6/2/2017 6:53 AM
Hey guys, I am reading up on something one can take for repair of blood vessels. Read this article. It talks about something you can take to help regenerate:

Posted By : (Seashell) - 6/2/2017 7:09 AM
It sounds as though Mayo has done admirable work in leading to a possible diagnosis for you in naming Buerger's disease.

This condition would encompass your symptoms. Bueger's involves chronic inflammation of the veins and arteries principally of the lower legs/feet and hands, causing vascular stenosis (narrowing) or constriction (obstruction).

Do you smoke? My father actually had Buerger's. It was theorized that smoking was the culprit to his family reduced vascular floor in his hands and lower legs/feet. He kept smoking which did not aid help his case.

I hope the the cardiologist appt goes well and that he/she can help you get your health to a better place.

Posted By : judylissette - 6/2/2017 7:50 AM
Actually, I don't smoke at all. I only consume non-toxic foods (non gmo, non antibiotic and non hormone fed meats, vegetables, fruits, legumes, and vitamins. I only drink water. My cardiologist near my house is the one theorizing the Buerger's disease and I am talking to a functional medicine doctor regarding detoxification and rebuilding my vessel walls. I just spoke with Mayo and I should be able to finally meet their cardiologist on Tuesday of next week. I am going to speak to him about my cardiologist's theory and how well it lines up with what I m going through. I feel like in order to get better I have to beat the clock. I am wondering if extensive exercise can get blood to those narrowed blood vessels? I need to figure something out soon. This toxicity is no joke. I have a family to take care of. I'll be darned if i don't give it my all to try and get these toxins out of my body as best and fast as possible and tey to regenerate and produce stronger blood flow.

Posted By : judylissette - 6/2/2017 8:13 AM
I just hope that Mayo is on board with checking for Buerger's. Only thing is if they require contrast dye, I really don't want it ever again.

Posted By : judylissette - 6/3/2017 4:43 PM
Karen, what did your dad take for this? I tried taking 5 mg Prednisone yesterday and it caused my veins to hurt even more.

Posted By : (Seashell) - 6/3/2017 9:35 PM
My father was a heavy smoker, which likely was the underlying cause of his vascular inflammation and occlusion. He continued to smoke after the diagnostic findings - which hampered any hopes for an easing of the situation.

He was treated by a vascular surgeon for the Buerger's syndrome. He was placed in liquid prednisolone and Relafen (a prescription NSAiD.

I would not equate the 5 mg of prednisone that you took as the causative element in the uptick of your pain. Rather, I would suspect that the uptick in your pain that you experienced yesterday would have been present with or without the prednisone. Meaning: The increased pain that you experienced was likely independent of the prednisone and more likely do to an acute episode of either vascular stenosis or completion occlusion of a portion of the vascular tree supplying the affected limb(s).

There is simply no cause and effect to prednisone and the uptick in pain.

The likely cause and effect is an acute episode of stenosis or occlusion due to the underlying Buerger's.

Prednisone is an outstanding anti-inflammatory. It is given to patients with acute intestinal bleeding due to inflammation of ulcerative colitis and Chron's.

Stick with the 5 mg of Prednisone. You should experience tapering of the vascular inflammation within 3-4 days.

A Dopler study of the vascularizarion of your lower legs/feet and arms/hands will give detail as to any problematic stenosis or occlusion.
Prednisone will not reduce pain due to stenosis or occlusion.

The pain of Buerger's syndrome is two fold: 1. Inflammation of the lining of the vessels and loss of the one-way valves, causing blood to pool distally, and 2. Stenosis (narrowing) and occlusion (blockage) due to scar tissue formation in response to the everpresent inflammation.

I think you will learn more once you are able to visit with the vascular surgeon at Mayo. You will need an imaging study of the vascularizarion of your legs and arms to determine the extent/presence of stenosis and occlusion.

Make no mistake, stenosis and occlusion of vascular vessels is extremely painful. The tissues and organs normally supplied by the vascular segment are devoid of oxygen. The pain is tissue anoxia pain. In extreme cases, the stenosis and occlusion can lead to tissue death/necrosis.

Any tissue devoid of adequate blood flow will "scream."

Keep your sights set on your appointment with the vascular MD at Mayo. Once you get a treatment plan in place, you will feel better knowing that answers are in their way.

Hang in there. As best as you can,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : judylissette - 6/4/2017 7:39 AM
Thank you, Karen. Is there any way to dilate the vessels or open them up somehow? I am afraid this might not just be in the arms and legs, but also in my head. I have been feeling a bit of similar pain from fingers and toes in my head. I am quite concerned. I am trying to keep my blood thin as much as possible.

Posted By : straydog - 6/4/2017 7:47 AM
judy, please be very careful with this blood thinning you are speaking of. Blood too thin is very, very dangerous. I urge you to not go that route. Your blood needs to be at its normal range for you when you see the drs at the Mayo Clinic. Hang in there.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : judylissette - 6/4/2017 8:04 AM
Hi Susie, thank you for the feedback. I am hoping a diagnosis can be reached soon. I just don't want to worsen even more. It has been a difficult two months and I am trying to do what I can to stay positive. They do need me to be in my "new normal" current state to be able to test me properly. I do agree with that.

Posted By : (Seashell) - 6/4/2017 8:29 AM
My concern at this time is that you are becoming hypersensitive to your symptoms and acting on them independently without full awareness of your actions and possible consequences.

Re: "I am trying to keep my blood as thin as possible." You could inadvertently cause a hemorraghic stroke or other source of internal bleeding.

I would not be pursuing homeopathic or medical courses of action that you "think" will be helpful.

Hold steady until your upcoming consultation with the vascular MD at Mayo. You will need diagnostic testing to rule in or rule out Buerger's. if it is Buerger's, the resting will show the vascular segments affected and the degree of narrowing and treatment options.

Use this forum for emotional support and commaeaderie as you wait for your Mayo consultation. We'll lift you up in spirit if you are feeling low. But your specific questions are growing and more appropriately addressed by your Mayo team.
- Karen -

Posted By : judylissette - 6/4/2017 8:45 AM
Thanks, Karen. Yes, I am feeling low about this, especially with the growing feeling of blood vessel pain and tightness, plus change in color. I hope something can be determined asap. I cannot lie. I am scared. I want to hold my baby and barely can because my fingers hurt more and start going numb. This is so dificult.

Posted By : judylissette - 6/5/2017 3:25 PM
Thank you, Karen. I appreciate it.

Yes, it is a bit difficult to know what to do and I am trying to see what I can do to heal myself in the meantime. You're right, blood thinning isn't necessarily the best course of action. I'm just wondering what GE, the makers of Omnipaque used to come up with thrombophlebitis and phlebitis as actual severe side effects. Did they test on animals? What was the outcome of those animals they tested on? Do we know that if the Omnipaque lingers in the tissues for a while, does it continue to harm the veins as the blood runs through it? What is the lifespan of my veins now?

I am 37 yrs old, but my veins feel like I'm 80. So does this mean my lifespan has been shortened? If so, I am looking into vein transplantation. Trying to be as proactive as I can. Thank you for your concern and for the reassuring words.

I just hope Veinpain is okay. I have so many questions for her. My concern with her also is that maybe she had testing done of her blood vessels with either the same dye or another and it may have hurt her further. Veinpain, if you're reading this, please let us know how you are doing.

Posted By : straydog - 6/5/2017 4:09 PM
judy, VeinPain has not been back to Healing Well since the above date. If you would, please start your own individual thread so this one can fall back off. To make a new thread click Post New Topic, type in a heading & then type your post. That way you can have your own continuous thread going.

Moderator in Chronic Pain & Psoriasis Forums

Posted By : judylissette - 6/5/2017 6:02 PM
Okay, thank you. I had written back and forth with her in another forum on a different website and she was going to get her blood vessels checked out at the time. Will probably start a new one to chronicle what has been going on.

Posted By : straydog - 6/5/2017 6:28 PM
judy by having an updated thread of your own other people can read about your journey. We have hundreds of people that come through Healing Well daily & read, they do not have to be a member to read. Your journey could help someone else.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 6/5/2017 9:30 PM

Work with your Mayo vascular MD a consultation. Hear him/her out and contribute your own narrative outlining your symptoms. A vascular Doplar study of some of your lower extremity vascular supply should provide enlightening additional detail. A Dopler study will be able to rule in or rule out vascular stricture, inflammation, and occlusion.

For now, try to refocus your thoughts and activities in a day. Additional worry is not going to provide positive benefit. If you need to channel your worry, write a bullet-pointed summation of your symptoms and how they manifest as something to take with you to your vascular MD appointment. Do not let worry spin out of proportion.

You will make it through this.
- Karen -

Post Edited ((Seashell)) : 6/6/2017 12:08:04 AM (GMT-6)

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