A Pain in the Neck That Almost Killed Me: Dan Jensen’s Blood Clot Story

Categories: Patient Stories

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Jensen, Dan headshotMy name is Dan Jensen. I am 42 years old, and, until a rare blood clot stopped me in my tracks, I had considered myself somewhat invincible. That last statement deserves some qualification. I have always considered myself to be medically lucky. Cancer does not run in either side of my family, my grandparents lived to a ripe old age, and apart from appendicitis when I was 16, I had never been really sick. My Dad had a DVT in his leg after years of airline travel and found out he was positive for Factor V Leiden in 2009. I was tested and I came up negative. My genetics seemed to offer me a lot of promise for a long life. Then, out of the blue, the clot came.

One day in early February of 2016, I noticed a small pain, deep within my neck, that I had attributed to a muscle pull from doing pull-ups in my P90X exercise routine. No big deal. However, over the course of three days, the pain did not subside. It didn’t necessarily get worse, but it was a discomfort that was unfamiliar. The pain only registered as a three to four on a scale of ten, so nothing screamed at me to get it checked. Three days after the symptoms started, however, a powerful inner voice urged me to get it checked. I figured it was nothing more than an infected lymph node. The ER doctor was about to send me home with antibiotics, but then ordered a CT scan “just in case” it was something more than an infection. That decision, coupled with the feeling to get myself examined that day, saved my life. When the doctor returned with the CT results, he said it was a miracle that I had been walking around with a blood clot in my neck for three days without dying. I had a massive blood clot in my left inner jugular vein. The technical term is an inner jugular vein thrombosis (IJVT).

Due to the extremely rare nature of this type of clot, the doctors were unsure of how to proceed. I was given a full body scan to rule out malignancies and blood tests to rule out anything else. I was put on two injections of low molecular weight heparin a day for three weeks, followed by three months of warfarin therapy. Still, it was a mystery as to why this happened. I was a walking medical question mark.

In the quest for answers, my hematologist was interested in hearing about my background. He knew of several examples where repetitive sports injuries had caused clots, but most of those were in the subclavian region. Nothing in the jugular. Furthermore, I had been doing P90X for several years and was in the best shape of my life – at age 42, no less – so the thought that exercise could have something to do with my clot gave me great pause. Yet, nothing else added up. People get injured exercising all the time, it happens. To be sure, my hematologist sent a note to the vascular team about my case that caused a bit of intrigue, so they requested to meet with me – the medical marvel. It was meeting with the vascular team that gave me a detailed explanation of what likely caused my clot.

After meeting with a fantastic vascular team, it was determined that the likely cause of my IJVT was doing intense pull-ups, which I thought was interesting. Upon seeing my skepticism, the doctor explained, “Like any sports injury, you can do it a million times, usually with no problems. But every once in a while, things just don’t go as planned in the body.”

In my case, the specialist said that during my pull-up routine (and these were very intense, hold yourself up and move side-to-side pull-ups) my muscles may have constricted against my jugular in a peculiar way causing my vein to treat it as a threat. The body then responded accordingly by producing a clot to protect itself during a perceived injury. Of course, sometimes doctors are not 100 percent sure of what causes a clot, especially in an extremely rare case like mine – so rare, in fact, that an Internet search barely pulls up a full page of results – but this is the best explanation we have so far.

As a way to fight through my recovery and step out of the shadow of fear, my goal has become one of vigilance in working with my doctors. Maybe it’s the side of me that wants to explore all possible avenues before coming to a conclusion, but I will not rest until I have examined all possible causes. Therefore, my advice to anyone reading would be to remember that the medical professionals work very hard on your behalf, but more importantly, they work for you. It’s not that I think they’re wrong – they’re most likely right on the money (I mean, hey, they are the experts), but even experts are still learning too. So, I’ll keep asking questions and searching for answers until they’re sick of me.

Now that the clot has dissolved and I am on the last 28 days of warfarin (and counting down), I am left with a few simple words of wisdom: Be aware of your risk factors, even if you think none exist. Blood clots can take many forms. If you’re at risk, know the signs. If you’re not, always listen to your body. If something doesn’t feel right, get it checked. And lastly, be an active participant in your recovery management. You’re your own best advocate.

To join our online discussion community and connect with other people who have experienced a blood clot, please click here.

To learn more about athletes and blood clots, please click here.

To learn more about risk factors for blood clots, please click here.

To learn more about signs and symptoms of blood clots, please click here.
Author: SW

13 Responses to "A Pain in the Neck That Almost Killed Me: Dan Jensen’s Blood Clot Story"

  1. Aimee Michele Bohanon
    Aimee Michele Bohanon Posted on April 25, 2016 at 11:05 pm

    You are very lucky! Like your Dad, I had a massive complete block in my left leg. I thought it was a cramp from my workout. Three weeks later, I called my primary physician out of frustration because the pain would not go away. Fast forward…they found the clot in my anterior tibial vein which is not a very common vein to get one. They ran all the same test as yours. Unfortunately mine came back positive for Factor V Leiden. Last week I had a horrible pain in my neck. One I’ve never had before. Of course my initial fear was a clot. After an examination, they diagnosed it as occipital neuralgia. They injected a nerve block and I was much better the following day. Scary, because you just never know!
    I’m glad to see you are another survivor sharing your story and spreading awareness!

    • lori
      lori Posted on September 7, 2016 at 5:45 pm

      Hi, I just read your post – I had a spinal injection last week the third this year to alleviate nerve paid in c5 that sends burning down my arms that is just incredible painful. After the injection I landed in the ER four days later with the same clot – a blood clot inside of the left jugular vein – when I asked how this could happen, clearly my thought is that is was the injection gone bad – the hospital sent me home four days later – not checking the clot to see if it moved, got smaller, etc., nothing at all. Just to follow up with hemoc doc? and not for two weeks? I own a small nurse company so I consulted with my contacts – they should never had sent me home without double checking the clot. So here it is days later, I have no idea if I still have it, if it moved, if it’s gone so I’m following up with my PCP and telling her to please send me for another scan – just really very frustrated

  2. Jackie
    Jackie Posted on April 29, 2016 at 4:00 pm

    Individuals need to be aware, and more importantly, doctors need to be educated!

    My mother survived a near deadly blood clot, but a few years later my young brother died unexpectedly from a killer clot. What was the difference between the two cases? This very line from Dan Jensen’s article: >>The ER doctor was about to send me home with antibiotics, but then ordered a CT scan “just in case” it was something more than an infection.<<

    The doctor who saw my mother ordered a scan, while the less-qualified doctor sent my brother home to die.

    You are paying the doctors. Ask questions. DEMAND answers. Odds are, if you went to the doctor in the first place, you're there for a reason. It's not nothing. It could be literally a matter of life or death.

    • Kevin Holmes
      Kevin Holmes Posted on May 1, 2016 at 1:45 am

      Great point Jackie!

      Like Dan I am in extremely good shape. I started feeling a deep pain in my side and shoulder for a number of days that felt like a nasty pulled muscle. As the days went by I started to feel more concerned and eventually the pain ramped up so bad I had my wife drive me to the ER.

      I was diagnosed with a pulled muscle. The Dr. told me I didn’t have a Pulmonary Embolism, and it was likely the pain was caused by inflammation due to exercise. They injected me with a very strong IV NSAID and sent me home.

      I was NOT satisfied with the ER Dr’s response and followed up with my Primary Dr immediately. They actually ran a Ddimer blood test (which the ER did not do… even though it was implied they did) and I received a phone call from the lab at 9:30pm that night telling me I was off the charts and had to return to the ER immediately.

      The ER Dr that night immediately recognized what was going on, and ordered a CT scan to confirm.

      Thankfully my Primary Dr took me seriously, and I kept pursuing what happened. I don’t know if I would still be alive otherwise.

  3. Dan Jensen
    Dan Jensen Posted on May 3, 2016 at 3:08 pm

    Kevin, glad to hear you lived to tell the story! Jackie, I’m so sorry to hear about your brother. It’s amazing how many people are misdiagnosed. Clots in young people are never suspected – especially if it’s located in a place that’s not readily apparent (lungs, neck, etc.). Hopefully stories like these will increase awareness in the public domain.

    As I’m now in my post-warfain phase, I’m left with the worries one might expect: Will the clot come back? Is this pain normal? This site has some great answers for those questions and has helped me immensely. Still, we know a lot about recovery for those with DVT and PE. Clear “dos and don’ts”. In my case, no one knows what’s normal for IJVT recovery, and that’s just not good enough for me. So, I’ll track my progress somewhere (maybe here) and post it for future sufferers to see. I’ve already started my full workout routine (sans pull-ups). But I still wonder every night – what if?

    Thanks for the comments, everyone. Please keep those stories coming!

  4. Rich
    Rich Posted on May 15, 2016 at 12:32 pm

    Great to hear good stories and sorry to hear about the ones that lost love ones. This past Friday on my way to the gym I felt like a stinging sensation on my lower leg, I scratched it and felt like I was being stung as I was scratching my lower leg (close to the bottom of the fibula) I noticed some inflation and a tingling sensation, it feels weird and something tells me to have it checked out. Now after reading Dan’s article, I will schedule an appointment with my cardiologist first thing tomorrow morning. Just in case. Thanks all…

  5. Gifted or cursed
    Gifted or cursed Posted on May 15, 2016 at 3:05 pm

    Thank you everyone for sharing your stories and I’m also sorry for your loss Jackie. My story is so overwhelming that I thought of my life before today and started crying. I went to the hospital on April
    25, 2016 to have a routine gastric bypass and was to leave the next morning. In recovery my pain was so severe and even though I cried out begging for someone to help me, they kept giving more and more narcotics, which would work for 10 mins and the pain comes right back. To me the pain was worst than death and I actually thought I would rather die than have to l live with pain. Two days later the pain was worst and I mentally I went ballistic and would call out all hours day and night begging someone/anyone to please help me. I pleaded that I was going to die if someone didn’t do something. The nurse I had that night came in several times and told me to be quiet that sick people were trying to sleep. I raised my bed up as high as it could go and I slept standing up because the pain was unbereable. The morning nurse called my surgeon several times that morning because of the agony I was in. The surgeon came and I told him how I was treated the night prior and the pain that I was having and it’s worse and I can’t take it. He ordered the staff to prep me for surgery and 2-3 hrs later they were cutting my jugular vein in my neck to have access to whatever they thought they needed access to. The next time I opened my eyes was four days later in ICU and I was on a ventilator that was keeping me alive. It turned out during the bypass they nicked my cecum and so from April 25 to 28 I had neither passed urine or bowel movement. They cut me just below my breast to just before my public bone – no bikini for me. When they opened me and proceeded to pick up my cecum it perforated and they had to wash out my body and reattached my cecum and fill me up with antibiotics thus leading to the ventilator. As I write this I’m still wishing that this is all a nightmare or that I’m already dead and my spirit is lingering or that I’m still in ICU unconcious. I woke up from ICU on the Sunday and the amazement of everyone they were able to remove the ventilator and I was able to breathe on my own. The one thing that hadn’t change was that I was still having pain and that’s because no one had known if my bowels would work. (I didn’t know all this until the day before discharged because I asked). The crying started again and less than 3 hours after being taken off the ventilator I started having bowel movements uncontrollable and this upset me to know I had no control and this added to my trauma. When the pain subsided a few hours later I was transferred out of ICU. Two days later I told the surgeon I can feel my inside ripping apart and he confirmed that’s to be expected. The next day he took half the staples out of my abdomen and there was a 11×5 and 7 ins deep hole in my abdomen. It was such a horrid site but again the surgeon explain there is always risk of infection with incisions. As the days followed my dressing was changed every day but where the hole was didn’t hurt as much as the top and today would be 6 days since I have been home only to find out that pain on the top is another hole that is tunnelling and going up towards my breast and it measured about 6-7 inches long. In addition to all of the above I am not able to eat or take any medication without feeling to throw up and I have a terrible pain in the back of left calf that will not go away (I think it’s a blood clot) I don’t feel well and I have this frightful feeling I’m going to die at home. While writing this I paused and called my surgeon to let him know of the second hole, my appetite, my hot and old cold spells and the pain in my calf. I hope to hear from him soon.

    If only they had listen to me while I was in recovery all that I went through could have been avoided. God help me.

    • Nioka
      Nioka Posted on August 10, 2016 at 4:42 am

      I am praying for you! I am also praying you receive very talented and competent doctors and nurses and that you have progressed since your posting with amazing swiftness and relief of pain. You would make a great advocate to speak out against arrogant and egotistical medical staff who do not heed their patients best interest, either out of fear they did somwthing wrong and try to fix it themselves, or lack of perspective as to what is actually happening, to plain incompetence and neglect. I feel for you and pray for you. It isn’t right. I believe my Mother passed at 48 due to these kinds of doctors. They should not be in medicine at all!

  6. Ann Walton
    Ann Walton Posted on June 7, 2016 at 10:21 am

    Did the blood thinners cause you not to have sex. My husband has the clots and is very upset that it has affected his ability to have sex because of the blood thinners. He takes Xarelto and the doctor says it is hereditary. So were you told that your sex
    Iife would chsnge and not for the good either!

  7. Rod Whittington
    Rod Whittington Posted on June 8, 2016 at 1:26 pm

    On May 10th 2016 I had a rt knee arthroscopy and found I had a torn meniscus, 2 weeks after surgery I noticed I had a pain in my rt groin area, thinking it was a pulled muscle cause I was back doing dly routines, about 4 days after this I had a pain in my rt side of my chest also thinking I had pulled a muscle, after 2 days sleeping in the chair with ice pack on my chest I felt a little better, so decided to sleep in bed that night, about 4 or 5 times I was awakened with a hard jab in my rt side with sharp pains when I took a deep breath, so about 8 a.m. I had my wife take me to the ER just to see what was going on, the minute I was telling the receptionist about surgery and the pain I was having a nurse came around the corner and took me to a room and hooked me up to a heart monitor and got the Dr right away after telling him my story they did a CT scan/Contrast and found a big clot in my upper lung and several in my Pulmonary artery, they transported me by ambulance to a near by hospital to the Cardiac Care unit, several Drs then took over and all were surprised that the ER Dr had detected it right away. After 4 days in the hospital I was sent home with Eliquis I guess I could say that the ER Dr saved my life, so when you do have these symptoms make sure the Dr listens to your whole story and also tell them family history cause my mother has dealt with blood clots since 1969.

  8. Dan Jensen
    Dan Jensen Posted on June 8, 2016 at 9:40 pm

    Ann, I was on Coumadin. There were no sexual side effects from the drug. However, the first week I was terrified of what was going on in my body. Rest assured my libido took a back seat until I could get my fears under control. Thankfully, I didn’t suffer from lasting depression or anxiety from my experience. But I imagine many, if not most, do. That could explain your husband’s hesitance, too. Glad he’s alive, though!

  9. Kaity
    Kaity Posted on July 27, 2016 at 10:41 pm

    Dan, it is rare that I’ve been able to read stories where people have the same type of clots as I do. I never could of imagined anyone having blood clots within their brain, as PEs and DVTs are much more common, let alone be one of the 4-5 people out of a million effected with it. I had a clot in my left transverse, sigmoid sinuses and left jugular vein. I was too tested for factor V and was negative. There is no explanation to why I had these clots. I was pulled off treatment as they dissolved with Coumadin. Since finding out I had 3 and not just one, I am worried that I will form another clot and potentially I may not catch it before it’s too late.
    Prior to being hospitalized for the clots I had gone to the doctor probably over 20 times complaining of pain in the head and neck as well as changes in how I mentally felt, but I was sent out with the doctor explaining that it was stress. After nearly 10 years of symptoms my neck was enlarged on one side and I still can not move my neck as far to the left as I should be able to.
    I know you said your team mentioned repetitive exercise but did you ever find any other reasons for the clot? Although my left arm lost movement and was weak I was told it was a strained muscle until I found there was a stroke on MRI.

  10. Cathe
    Cathe Posted on August 2, 2016 at 10:16 pm

    I am so glad to have found this group as I have a lot of questions relating to my diagnosis 4 days ago of an internal jugular DVT – things I never ever would have imagined let alone known what they were! I’m grateful for the sharing from all of you – thanks for starting it off, Dan – and for the chance to see if I’m all alone in this. First of all, I had a pain in my neck that I thought meant I had pulled a neck muscle – or perhaps had been clenching my teeth at night in a particularly heavy-duty way. I tried to self-massage it out, used Tiger Balm and a heat pack, slept with an ice pack.. and yet nothing seemed to help. I started having the sensation of heaviness in my chest, had difficulty catching my breath, and had some pain right about where my bra crosses my chest. Stress, over-work…I kept trying to figure out what was going on. I did deep breathing, tried relaxation, and finally about a week later went to urgent care. My primary physician wasn’t in on Saturday but the PA checked me out and noticed some swelling – but not a huge amount — around my thyroid. Because I have hypothyroidism he suggested I go to the ER (across the street) for an ultrasound. I walked over to the hospital and they sent me to radiology. Almost immediately after starting the ultrasound the tech said – you have a blood clot. This changes everything. He finished his review and sent me back to the doctor’s office. I walked in and they immediately took me for some blood work. The PA gave me a prescription for heparin and warfarin but before I filled it he wanted me to have a ct scan. So I walked back over to the hospital where they gave me the full Star Wars experience with contrast dye. When I finished the tech somewhat reluctantly sent me over to the doctor’s office again where the PA loaded me up with prescriptions for antibiotics and a directive to get started on them ASAP. His only explanation was that – since I didn’t have any history of catheterization or trauma – I must have a deep infection. It didn’t make a lot of sense because I really felt fine (except for the concrete bag feeling on my chest, the pain in my stomach, and the growing headache). Fast forward to today – I felt so terrible on Sunday that I called the physician on call and she sent me to the ER. The shortness of breath, the stomach pain, and the overall terrible way I felt – the fever, the inability to stay awake… I have never felt so bad in my life! No one has said anything about these being typical symptoms. They re-ct scanned me, took blood cultures, did a chest X-ray, sang happy birthday (at midnight I was still there on my birthday) and they sent me home. So….today. I am now successfully injecting heparin twice daily, taking warfarin, going for my INR, and taking the antibiotics but NO ONE has told me when I am going to feel better again. Does anyone have the same experience of being incredibly tired (I’m sleeping 10-12 hrs at night with naps throughout the day), having stomach pain (the doctor suggested it might be the meds but I had this pain before I was prescribed anything), having a headache that doesn’t quit, and just generally feeling awful? One final word to close – I left the doctor and the many trips back and forth to the hospital with no idea how serious this was. I think I am just beginning to realize but stil feel like I don’t have the whole picture. And I feel so guilty for not being at work – the PA told me I should be fine to go back but I’m pretty sure they won’t pay me to sleep under my desk! Anything anyone has to offer re: the stomach ache, the fatigue, the what next? – I will greatly appreciate! Thanks for sharing, y’all!