Personal VAD & Stroke Stories - Page 10
These are just some of the personal stories people have sent to me since April 2008. There are many more but problems with email accounts mean I don't have emails previous to that.
FORUM: Visit the new VAD Chat Forum (started 11/21/09) to discuss VAD, ask questions, and help others.
VAD, Car Accident, F68
I was 67 years old when I had my VAD. This is a lot older than most of the stories I have read. It is also why a VAD was not considered because it is called a young persons stroke. I was sitting working at a computer terminal when all of a sudden I could not see out of my left eye. I was at a doctor's office and was sent to an emergency clinic. My blood pressure was 200/110 but I had no pain and was treated for hypertension. I came back home that night and called my primary doctor. I had 3 MRIs and a CT scan before a vertebral artery dissection was found.
That was 8 months ago and I still have no pherepheral vision in my left eye and I still cannot drive or work. My neurologist still says there is a chance I can regain my sight but my opthamologist feels that I will not regain any lost vision. I would like to hear from anyone who has had vision loss and who either has regained their sight or still has vision loss.
VAD, Spontaneous, F28
I am just going to give my whole story (one that has not reached an end) I had neck pain for 2 weeks, I figured I had strained a muscle but when I started to feel faint from turning my head to look over my shoulder I suspected something more may be wrong. It was a Friday evening when I decided I couldn't wait any longer so I raced to CareNow right when they were closing. The nurse tells me I could pay my co-pay there but that they would just send me to the hospital to have me tested for meningitis, I thanked her and left, I thought meningitis I don't feel sick so I went home. But I still knew something was wrong so finally I went to the ER, the doctor that initially came in obviously thought like I did (a stubborn pulled muscle) but he got a more important call and sent the PA in to deal with me and I have thanked God everyday for that turn of events because the PA was extremely concerned about the fainting spells caused by turning m y head. She sent me for a CT angiogram and that is when my life changed. Next thing I knew every medical person that had dealt with me came in and put me in a neck brace, told me I wouldn't be going home and hauled me off to the ICU. I was completely shocked and in denial. I was one of the few people that caught the VAD before having a stroke. I have been relieved that it was caught but frustrated because the doctors seem to be so limited on info.
They found my VAD in February and I am still not healed completely I was taken of warfarin at the end of June and I am now on an aspirin regimen because the artery is still narrow but not actively bleeding into itself. I have had several new issues come up that they can't say for sure if it is the artery or some other underlying cause. It is so frustrating to have a diagnosis which only provides information that prevents further damage, it doesn't seem to provide all the answers. So I am reaching out here...
Have any of you had chronic headaches/neckaches since the onset of the dissection? How about tingling/weak feeling in one of your arms?
Or the latest/scariest symptom so far, extreme fatigue? I mean fatigue that keeps you from keeping your eyes open? The kind that you catch yourself nodding off in the middle of the simplest tasks?
I have such a hard time believing that at 28 my health has taken such a drastic turn in the wrong direction... I am so young, I just want to go back to normal and I am starting to think that will never happen. And if this thing is healing why am I still having new issues? Is it possible that it is all unrelated and I truly am falling apart at 28?
My heart goes out to those of you that have had a stroke.
VAD, Stroke, Spontaneous, M75
First, thank you for you web site. I think my cause was working on my son's car, don't know for certain. I was helping my beautiful wife of 52 years by doing a little vacuuming in the house when I started to get dizzy and unsteady on my feet. My wife called 911 immediately, for fear of a stroke. I was admitted to the hospital ER, they did a CT scan (no contrast) for a major stroke, they did a chest x-ray, started an IV and admitted me to the hospital neuro section. I got a MRI and a CT scan (with contrast) and the neurologist said I had a clot and this caused right side fine motor skills to be lost, He is not certain whether the VAD caused a clot to form or whether plaque from an artery caused the event, went on warfrin, and lipitor and full size asprin after heparin treatment to thin the blood and prevent another event.
I am healthy 75 year old non smoker or drinker I was very lucky, but scared as hell, only to lose right side fine motor skills. I hope they will return with continual exercise. This is a scary event for anyone, especially as it is usually a bolt out of the blue for most people. My heart goes out to all who have not been so fortunate as I. Thank You.
VAD, Bi-lateral, Stroke, Spontaeous, M52
I'm not looking to draw attention to myself, but since I discovered how common VAD is through this wonderful web site, I wanted to share my experience to offer hope to others who have had the same "stroke" of bad luck. 🙂 If you can't handle my sense of humor then move on. Please check out a must-see video: "Brain Freeze" with NYC comedian, John Kawie. He managed to turn his unfortunate incident into a stand-up comedy routine. The routine actually works!
After being more than two months removed from my fateful evening of 5/16, I have since seen my internist, a cardiologist, and a vascular neurologist at Columbia Presbyterian in NYC. I am on blood-thinning meds and will be wearing a heart monitor for the next three weeks to rule out certain cardiac conditions.
My stroke occurred while I was in the gym. I was warming up as I usually do when I started to feel what I thought was a migraine coming on. (I usually get about 1-2 per year. When I have them, I usually take two Tylenol, go to sleep, and they're gone the next day.) I started to pack it in for the evening, but felt dizzier and dizzier as the minutes passed. I liken the experience to being on the worst ride at Great Adventure times 1000! I sat down on the floor, propped myself up against the wall, and was there for about 20 minutes until a young guy I was helping earlier in the evening came over to ask me if he could borrow my equipment. I told him that I'd be more than happy to let him use the weights, but I really needed him to get the manager to call an ambulance. He's a great kid. He sat with me until the ambulance came. He said that I was uncharacteristically vulgar because I was so confused, nauseous, and annoyed.
The other symptom I experienced was the classic black-out shade effect. It's as if someone pulled dark shades down over my eyes. I could hear, but I couldn’t see because I was too dizzy to open my eyes. The EMT did a great job trying to get me to slow my rate of breathing while inserting a nasal tube for oxygen. After what seemed like an interminable amount of time, I felt the EMT's pick me up, place me on a stretcher, and put me in the ambulance. I “felt and heard” the ride, but I still couldn’t see. Off to the ER at Robert Wood Johnson Hospital in central New Jersey.
In the ER, I heard doctors and nurses scurrying around me, but I could not open my eyes. They apparently performed a transesophageal echocardiagram (TEE) to check my heart, several MRI's of my head and neck, a chest x-ray, and a couple of MRA's of the vertebral and carotid arteries. Later on, I found out from the specialist that the ER physicians did NOT administer a miracle clot-busting drug that is often given. I hope that it was not needed as opposed to being someone’s oversight.
The next morning, when I was a bit more coherent, but still quite nauseous, the attending neurologist and his team came to my hospital room. He said, "Mr. Levy, You had a stroke!" It turns out that I had multiple occlusions of the vertebral and smaller arteries in the back of my neck and head. There was necrosis in various parts of my brain. The scans backed up the symptoms that I was experiencing. I was dumbfounded. I wasn't that old. I have an impeccable exercise and eating regimen. OK. So, my Dad had a couple of minor strokes. But, he was already in his 70's when they occurred. I thought to myself, "What does a guy have to do in order to avoid this kind of problem?" After reading all the material the rehab center gave me, I realized that what happened to me was out of my control.
Rather than brood, I decided to concentrate on the positive aspects of my situation. I certainly had some good luck on my side. Although I have spotty vision in my right eye, short term memory lapses, and noticeable numbness in my right leg, arm, and rib cage, I'm convinced that being in good shape and maintaining a good diet helped me to survive and rehab quickly. I was in the hospital for four days, a rehab center for another five, and then in outpatient therapy for three weeks. I still would have been in outpatient rehab, but I checked myself out because I wanted to work on my own. I realize that some contributors to this site have had a much tougher road to handle, but it's all relative. Self-motivation is the key no matter what your current level of function is.
In November, I return to Columbia to have follow-up scans taken of my heart, head, and blood vessels in my neck. In December, I have a follow-up discussion with the vascular neurologist about the results of the scans. Although he said that it is difficult to diagnose VAD, it is his hope that new vessel tissue will grow over any possible dissection and “smooth out” the interior of the blood vessels. Even if a blood vessel is slightly narrower as a result, there should be no problem going forward. The neurologist also wants to keep an eye on a patent foramen ovale (PFO) and an atrial septum aneurysm (ASA) that I have. More acronyms to look up! Most important, and I can’t say this is true for everyone, the neurologist said that the likelihood of this situation occurring again is in the single digit percentages.
As of today, I am back in the gym doing a lot of calisthenics and cardio work. I'm also doing some very light weightlifting. I was told to avoid any type of heavy lifting. I realize that it’s a small price to pay, but this moratorium from lifting comes on the heels of arthroscopic knee surgery back in February when I was already out of commission for about a month. Incidentally, I grilled the doctors on any correlation between my knee surgery and the stroke. The vascular neurologist stated that a blood clot in my knee from surgery would not “survive” long enough (3 months) to lodge itself in my neck. I have also returned to driving about two weeks ago after completing an extensive evaluation course with an occupational therapist who is also a licensed driving instructor.
On a side note - Seeing the Olympic and Paralympic athletes during Opening Ceremonies of the 2012 Olympics last night has further inspired me. As a way of giving thanks for my survival, I will be walking a charity 5K run on Sunday for the Wounded Warrior Project. I hope to be participating in more of these charitable sporting events in the future.
Never give up the fight!
Peace and Happiness to All.
VAD, Stroke, Spontaneous (neck manipulation), F36
I also had a dissected coratid artey and suffered a sudden stroke From it. I was 25 yrs old. So I guess its been almost 12 yrs since it Happened. Not sure if that affected my heart but last few yrs have Been having terrible tackycardia :/ anyway my ex boyfriend tried to adjust my neck for me after a car accident because it was stiff and the chiropractor was closed for Xmas holiday. He turned my neck too far and dissected my coratid artery and I immediately Went unconscious and had a stroke!
When I came to I was having convulsions and also couldn't feel my left arm or leg and side of face was numb as well. My left eye lid drooped for a long time too. Like almost 2 yrs. I lost my memory for a long time. I also had depression and anxiety afterwards very bad. Headaches. Bad Nerves. Racing thoughts. OCD. It was awful :/
I went to therapy for a long time. Also a psychologist. And also took medication for my nerves that eventually I wiened myself off of.. Now I get chest pain and palpitations. And still have poor eyesight in left eye and also weakness in left arm. Still have anxiety. And very very forgetful! :/ Have terrible circulation. Bad nerves. Trying to get health insurance so I can go back to counseling. It seems to help me a lot with life. Anyway. After having my stroke I have healed a lot. And praise God for that. But still have so many problems from it :/
VAD, Stroke, Spontaneous, M32
My story begins with a trip to the local CareNow for the symptoms of a lingering cold that included a cough on a Wednesday evening. I told the physician on duty that the the right side of my neck had began to hurt each time I coughed and now had began to hurt when i was not coughing. The pain was passed off as a muscle strain or a pinched nerve in my neck due to the coughing and I was prescribed some pain medicine. My neck continued to hurt and the pain meds did not really seem to help.
By Saturday of that week (June 16th), my neck was feeling a little better and I decided to go to the local gym to due a boxing / cardio workout. This group workout consisted primarily of pushups, jumping jacks, and some heavy bag work. about 20 to 30 minutes into the workout, I felt something begin to tighten across my shoulders. As it was a different feeling I stopped my workout. The tightness quickly turned to pain as it moved up my neck, finally ending with the absolute worst headache i have ever felt. This happened over the course of 5-10 minutes. I walked to my car and drove myself home (somehow). When I got home, I laid down on the bathroom floor, called my wife to come home (she was at a friends house about 30 minutes away). BY the time my wife arrived, I felt much better, but my neck was very sore and painful. She convinced my to go to the ER (which is not easy to do).
The ER docs were very unconcerned when i described the symptoms and the previous pain in the neck. I was prescribed more pain pills and diagnosed with a strained neck. I did not get out of bed until Monday morning, when i attempted to go to work. Between the neck pain and the inability to focus, i made a call to my primary care physician who was able to get me in that morning. My primary care physician had my neck x-rayed and diagnosed me with the diagnosis of strained neck muscle. More pain pills and muscle relaxers. By the end of the week, i was feeling nearly normal.
Saturday the 23rd around 530pm, i was at my neighbors for his daughters birthday party. I was sitting in a chair having a conversation when i felt a strange pull on the left side of my neck followed by 5-10 seconds of dizziness. I immediately felt normal after the dizziness passed and thought nothing more about it. About 30 minutes later i left with my wife and two kids to go eat dinner. About 1 mile from our home, i had to pull over because i was getting dizzy again. By the time i got the car pulled over and stopped, i could not barely walk, i was sweating profusely and i could not focus on anything. Soon after i was back in the car and my wife was driving us to the ER, I had an intense pain shoot up the left side of my neck and head that caused me to lose hearing in my left ear.
Once at the ER (the same ER we visited the Saturday before), the initial thought was that i was having a heart attack (due to a irregularity on my EKG that is normal for me). This particular hospital (Methodist Mckinney) has no cardiac unit so they transferred my to Medical Center McKinney. Once at Medical Center Mckinney, they quickly determined it was not a heart event and began looking at my neck and brain. By this time i felt much better, i had a headache and weakness / pain in my right arm and shoulder but otherwise felt okay. Around 8 am, the neurologist came by and informed us that i had bi-later VAD and had suffered two small strokes.
I was then transferred to Medical Center Plano to be under the care of Vallabh Janardhan (Interventional Neuroradiology with the Texas Stroke Institute). An angiogram was performed to get a better idea of the condition of my dissections. I am now on a daily regimen of Plavix and Aspirin (initially on coumadin but it cause bleeding in my abdominal wall).
VAD, Stroke, Spontaneous (hyper extended neck), M49
My husband use to work 6 &7 days a week, smoked 2 pks a day and had high blood pressure but was under drs care. My husband wanted to stop working so much so last fall we bought a camper; we started to go camping every weekend starting this past Easter weekend. In April, about a week before his VAD, stroke, he bought a fishing boat.
One Saturday morning, camping, he woke up and was stumbling and then noticed that his right side was numb and his voice was horse. He just sat down and was wondering what was going on and thought that it would go away. I woke up shortly after, gave him a cup of coffee and heard how he was talking. I thought that he was getting a sinus infection, then I saw him try to walk and knew that I had to get him to a hospital but knew that the local home town hospital was not enough. I wasn't far from Lehigh Valley Hospital, Allentown and got him there right away.
They ran all kinds of tests and at one point he seemed to get better until he put on his reading glasses to order some food. He couldn't read, then his symptoms came back and got worse. We where in the emergency room at 10:30 am, they admitted him but couldn't find his stroke and VAD until Sun late afternoon at about 4:30 pm. My husband stayed there till Wed. afternoon then was transferred to a local hospital closer to home for rehab where he stayed till that following Wed. He went from a wheel chair to a walker, then shortly before he left for rehab to a cain.
He had and continues to have half facial numbness (right side), he had severe shooting pain from the back of his head out to his right eye (the drs gave him a nerve block for that) after the second one it went away, now he gets a slight shooting pain once in a while. He also has sensory problems in his left arm as if he is getting shocked by electric when he first touches water but then goes away, he gets tired faster and can't turn his head fast or he gets a little dizzy but much better now then what he had. The drs changed his blood preassure meds, put him on plavix and an aspirin.
After 3 months out of work he is finally back to work as a mechanic but only half days for 4 weeks. next week he starts back full time. He has come a long way, he quit smoking but he still has his highs and lows emotionally with quitting smoking and having this stroke/ VAD. It has been a lot on the family living with what he went through and what he's going through now, especially me being the care giver and picking up the pieces, supporting him, the family, making sure he gets his medical needs, making sure the house is still going. It is tough but I'm the type of person who when I'm handed a situation, I deal with it and move on and I pass on the same positive aptitude.
VAD, Stroke, Spontaneous, F48
I am a 48 year old female who suffered VAD 5 years ago. Cause unknown, although I have some recollection of being hit by a wet tennis ball in a swimming pool at an enormous speed. Many visits to the GP in the early days of dizziness. Nothing done. Even had the stroke lying on the examination table. Still didn't occur that I had suffered a VAD. Sent home and MRI ordered for several days later! Finally ended up in the right place for treatment- coumadin for a year and a half, asprin for life. The residual effects? If someone had told me that I would still feel like I do 5 years down the track I don't know if I would have had the strength to go on. Fatigue and balance issues remain huge. Lucky to be alive but still finding it hard to forgive those doctors who didn't clue on.
VAD, Spontaneous (Car Accident), F52
I am so pleased to be here right now to tell you my story, but first I want to thank you for taking the time and energy to host an informative Website for education, awareness, and advancement of Vertebral Artery Dissection (VAD) information. My VAD occurred due to a car accident whereby a lady hit the gas instead of the brakes and T-boned into my truck. My daughter was in the truck with me, but thank God she was okay. The lady totaled her car, and the red pickup truck behind me, too. I walked away from the scene in Malibu, California on a bright an sunny day. The Malibu Sheriffs, LAPD, and the Malibu Firemen responded to the accident that left our truck facing oncoming traffic. We had sustained a complete turn-around, spinning around 360 degrees to land on the other side of the street. I was fine. My baby was fine.
My truck appeared to be non-damaged, but the next day I took it in to the shop where we have known the people for many years. I was immediately taken to look at the rear axle, as it was broken. How I ever arrived in one piece to the shop, I'll never know. That is when I first learned that I was in a really, really bad car accident. From then, I became progressively more ataxic. I had to hold on to the wall to cross the room, and I felt exactly like a blind person. What does it feel like to have ataxia? My brain was off-center. I groped for furniture in order to walk.
I presented to the ER many, many times. Being a doctor myself, it was not easy to arrive in an ambulance. I could not stand up, and had pre-syncope. My symptoms were confounded with the rare diagnosis of dysautonomia, also. Later, I developed Diabetes Insipidus (DI) because of the Traumatic Brain Injury (TBI). Eventually I could not walk or talk. On the 12th ER admission, one kind doctor send me down for another magnetic resonance angio (MRA). This is when the VAD was finally detected. I was shipped by ambulance to UCLA, where I underwent a cerebral angiogram. I could feel the injected dye enter the right side of my brain, cross over the Circle of Willis, and descend down the left neck.
That is all I can write for now. These were hard days, and I am saddened by the mental picture of what I looked like then. I was thin and gaunt, used a walker, and had an expressive aphasia. I'll recap more for you on this, later.
I'm better now. I am on blood thinner Plavix and anti-cholesterol treatment Lipitor for the rest of my life, they say. They do not want platelets or lipids to hide away in any remnants of either the VAD or the 2 cm aneurysm that was at the base of the dissection. I still take midodrine for dysautonomia, as that pushes my blood pressure up so I can stand up without being orthostatic, with blood pressure dipping down. I found a Chinese Herbal Medicine, Rejuvenate-U, that has cured urinary incontinence.
I'm on You Tube, Facebook, Twitter, and I have an Author Blog for the book that I wrote, No More Tears: A Physician Turned Patient Inspires Recovery. My book is out in December. I wrote the book while in the hospital 37 times, and I like to think that I inspire people to beat all the odds. I did. I also try to teach people that the doctors are not always right, so they have to keep their hopes up and not let any one take them away. Miracles do happen. I'm one.
VAD, Spontaneous (neck surgery), F36
I am 36 years old and 3 months ago I suffered from a right vertebral artery dissection. 10 months earlier I had undergone a neck surgery to remove and replace two discs at the C4-C5 and C5-C6 vertebras with titanium cages. My neck was still stiff from the operation and I had not gained full flexibility when the VAD occurred. I was swimming and just felt disoriented all of a sudden for a few seconds. I thought I had pulled a muscle on my neck, and kept swimming. Upon leaving the swimming pool, I experienced extreme fatigue and muscles pain. Later on during the day, I had vertigo and saw something appearing and spinning in the left side of my visual field. It lasted 20 minutes then went away. I thought I had suffered from a panic attack due to the fear of having injured my neck. The following day I woke up with a head ache and a pain in the right upper side of my neck. I kept on with my life and took some ibuprofen. The pain did not go away as i t usually would but rather kept increasing during the next 3 days in spite of me taking muscle relaxants and painkillers every 5 hours. The 4th night the pain was unbearable. I called a doctor who came to my house and gave me a shot of morphine while stating that he was perplexed by the situation and recommending I would go to the hospital first thing in the morning. I did not sleep that night and the pain kept getting worse. By 7 a.m. I could barely walk. I called an ambulance and they took me to the hospital the doctor had suggested I'd visit the night before. They had quite a renowned neurological department. They gave me a scan. And right after and MRI. They diagnosed the VAD and sent me to IUC, where I spent 10 days. The first day they also gave me a lumbar shot. Thankfully I did not suffer from a stroke nor from brain hemorrhage. The pain in my head and neck was extremely severe though. I was treated with heparin shots and morphine. I was told I could not stand up and lied in bed for 6 days. The pain got finally better by the end of the first week. On the 10th day I was moved to regular care and spent there 3 more days.
The pain continued for weeks, so did the fatigue. Although each day I got better. I was given coumadin for 2 months. Following an MRI after 8 weeks, I was told I could stop the coumadin treatment and that I had to start taking an aspirin each day. The scar on the artery is still visible, though the angiogram showed that the blood circulation had become normal again.
I am due for another MRI in December. In the last couple of weeks I finally stopped getting headaches. It is such a relief. I have been experiencing high level of anxiety, and from time to time, panic attacks. The first 2 months I was terrified something bad could happen to the artery. I am trying to rationalize and repeat to myself that I am indeed healing and that I was lucky not to suffer any neurological consequences. I am taking xanax for the anxiety and I am hoping I will soon be able to stop taking it and go back to a regular functional productive life, as I was repeatedly told by the doctors.
I am afraid I have been experiencing depression as a result of such a sudden abrupt change and from the horrible scare I had, and the fear that it might happen again.
Was any of you told too to take aspirin every day for the rest of their life? I suffer from stomach pain in the morning from taking it and generally speaking I don't like the idea of having to take a medication each day until I live, especially because it makes me feel like I am still at risk of something that requires to be treated.
And has any of you experienced anxiety/depression after recovery?
Thank you for reading and for your answers. Take care.
VAD, Stroke, Spontaneous (car accident), M48
I woke up five days ago an felt dizzy--took a shower, got dressed, ate breakfast, and was noticing a problem walking. Sat down, told my wife--she told me to get up and show her my walk...basically I was stammering, and she said "let's go, now, to the ER".
A stroke was suspected right away by the ER doc due to my symptoms--dizzy, imbalance, and the left half of my face was numb--I was given a CT scan and sent to the neuro ward.
Tried to eat lunch and threw up immediately--could not keep my eyes open due to the verigo and was sleeping constantly. Was administered blood thinner (Hemperin?) via IV.
Felt better the next day, ate, got an MRI done, neurologist confirmed VAD resulting in a brain stem stroke--Wallenberg's Syndrome. Stayed for 5 days in hospital. On coumadin for the next 6-8 months until the clot dissipates and the tear heals.
Deficits: Balance, vertigo, fatigue, tingling face. Not able to drive, not able to do much of anything except my balance exercises and take it easy. Off work until further notice.
I'm not sure why me...but it really doesn't matter, because I'm alive and on the mend. The biggest thing I see on the horizon is looking for this to happen again under every rock and around every corner...
VAD, Stroke, Spontaneous (gym training), F54
I started a new fitness routine with a trainer who hooks you up to a vibrating machine as you work out. I went for my first work out session on a Wednesday. While I was on the machine doing overhead weights, I became extremely dizzy, and fell off the machine. The trainer chalked it up to me not being used to working out. I left the gym with a horrible headache and pain on the right side of my upper neck. I went back to the gym the following day still feeling off, but I thought it was simply sore muscles from doing a new routine. After a second work out, I felt nauseas, dizzy, off balance, major headache, and had an electric like pain in my neck. Two days later I was in the change room of my daughters sport team, supervising the girls, when I collapsed, and had severe vomiting. Minutes later I lost all the feeling on my right side. My husband rushed me to the nearby emergency ward of a major hospital. After a couple of hours of waiting around, the emergency room doctor declared that I was suffering from the flu and if she had a pill to cure it, she would be rich. There was a shift change, and the new doctor reiterated the diagnosis of the first doctor, but thought it might be wise to keep me overnight for observation. I remained in the hospital for another two weeks before the neurologist discovered it was a VAD. After another week in hospital I was released and given blood thinners.
A full year has now passed, and a MRI confirmed that the VAD has healed, but I still have all of the stroke like symptoms including migraines, dizzy spells, numbness on my right side, severe neck pain, and blurred vision. I thought the stroke symptoms would disappear with time, but they haven't, very frustrating to say the least. The doctors say that I simply have to live and adjust my life accordingly, as there is nothing more that they can do. I'm glad to be alive, but wish the quality of life was better!
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