I am sorry for everything you're going through. And I'm sorry to ask for clarification, but did you have a TIA, or was that a misdiagnosis based on them not knowing about the jugular clot? I wasn't quite clear on what you were saying in that part of your description. What sort of treatment did you receive that helped your arm go back to the "normal" DVT symptoms?

Unfortunately, I don't know of anyone else on this group who has suffered a clot in their jugular vein. Most of us here have had clots in legs, arms, pelvis, etc. So I can't relate to exactly what you've been through. If you did have a TIA, did the doctors guess whether they thought it was new clotting or whether it was connected to the jugular clot you already had? DVTs can, in some rare cases, be a risk for stroke. I knew someone who was diagnosed with a stroke at the same time as being diagnosed with pulmonary embolism. But if the TIA is from new clotting, I would wonder why that happened since you are currently on lovenox.

All I can suggest is to try taking things little by little. Clotting is a horrible experience all around, whatever the particulars, and I'm very sorry you're having some additional complications to an already kind of unusual clot. Take care of yourself, get whatever rest you need, because I imagine you really need it, and just try to ask good questions of your doctors, whatever will help you understand what is happening better.

I have to echo what @ShilosMommy said... I can't think of anyone here who has had a jugular clot. I think it really is pretty rare and it sounds like you had a long frustrating visit to the ER. However, I'm glad you're starting to feel better now. Although, I wasn't totally sure what happened either. TIA or clot or both?

Even though you seem to have a pretty rare case--even among other clotters--there are some things that I can definitely relate to. I've also done repeat trips to the ER, although none quite as warranted as yours. I've also been frustrated sorting everything out and figuring out what the proper care was and what was happening to my body. I've had other medical issues pop up after a clotting incident, which just makes everything SO much harder. And I've felt totally lost in the whole experience. It really can be overwhelming to be trying to deal with this kind of situation and to figure out what the best thing to do is. So, I think a lot of what you are feeling emotionally is very, very familiar on these boards.

And, truthfully, even if you did have a "regular" kind of clot in your leg or arm, there's no hard and fast rule about what is normal and what isn't. Every clot is different and every patient is different and no one has the exact same experience as anyone else. Some people recover pretty quickly, while others take months (or years) to get back to where they were. Some people have tons of pain while others don't have much at all. Ice might help one person, while heat helps someone else. It's impossible to find someone who has had the exact same situation, no matter what and where your clot is.

But, I think a lot of us have felt the way you feel. We've dealt with Lovenox and coumadin. We've worked through the emotional fallout and trying to sort out our new "limitations." And, for most of us, it can take months to really figure out what is the "new" normal and what requires another trip back to the ER ... there's no shame in that.

I'm really glad you went and got checked out. Trusting your gut is often the best protection we have for a while. And, I really do think that things will be back and forth for a while. Clot recovery never seems to be a straight line up... we all have good and bad days. I really hope things start to shake out for you soon and that you start to see some of those good days.

Keep us posted on how you are doing!

Yes, I like what Toss said about while we don't have the exact situation you do, there are some underlying similarities in dealing with the situation both physically and emotionally. I wouldn't want you to feel as though we can't offer you support here because we haven't had a clot in that particular location, because we do want to support you as best we can.

It happens that she and I both know from experience how different and yet how similar clots can be we we've both clotted multiple times, and each time is a little bit (or a lot) different experience. I felt terrible for you when I read your first post because having a jugular vein clot sounds like it would be a miserable place to have it, since you'd get symptoms in your neck, head, arm. I, at least, seem to be more sensitive to pain when it's up near my head. I don't know if that makes any sense, but like I had three different clotting events in my legs; however, when I had an arterial clot in my arm, I felt much sicker for a long time after diagnosis than I felt with the leg clots.

And definitely, the feelings of being overwhelmed, scared, maybe not quite understanding all of the information thrown at you in the beginning - we've been there too. And you've said you're dealing with other health issues on top of this, so I know this is a really hard time for you. Try to be patient with yourself and take things one step at a time, deal with whatever is most present and needs dealt with, and worry about the next steps when you get to them, try not to overwhelm yourself with thinking too far ahead. I am so glad your doctor sent you to the ER, when you started describing your symptoms here, I was worried for you. Definitely when you feel a significant change from what you've gotten used to, see the doctor or go to the ER. It's really the only option we have in the early part of recovery, and it's exactly what my ICU nurse told me to do. She made me stop and think about what I physically felt, and said to remember it, but if something changed, then I needed to let them know while I was in the hospital or come back again if it happened after going home.

Try to stay positive, although I know it can be difficult. Recovering is an up and down process, but it does get better over time, so try to keep that in mind.

I thank each of you for your support and encouragement.

Over the last several days I have been gathering records from my most recent ER visit(the 14 hr one!) and the initial US report showing the clot.
The diagnosis of the TIA which is the diagnosis I left the hospital with is nowhere mentioned in my ER records, except for the "after care instructions" I was given.
I am not a radiologist, but due to another medical condition I have had (benign brain tumor) I am pretty good at reading MRI reports. Nowhere in the MRI or CT scans that I had does it say anything close to indicating a TIA had occurred.
I will take this information with me to my Internal Med appt on Tuesday.
I did report the jugular clot but there was so much miscommunication during my visit at this particular ER that somehow it was lost in translation. Thus, a letter of displeasure is being drafted.

Looking at the US report from my initial US when the clot was found, it states that "blood clot is formed throughout the interior jugular vein." I guess that I didn't realize that it was as extensive as it is.
Which is I guess why the Dr's that I have seen have been as concerned as they have - I guess my somewhat unsure stance on this situation just stems from me being so overwhelmed by this just adding to one more medical issue I am facing in the last several years. Accepting this and seeing the report helps me some - Yes, I am pretty hard headed! LOL!
Again, I thank you all so much for your encouragement through this new journey I am on!

Wow, that whole ER visit sounds super confusing for sure. I'm so sorry that you're having to go through that. I mean, symptomatically it sounds like you had a TIA, but if the records don't indicate that, then was that all just symptomatic of your DVT? I hope you can see whatever doctor is managing your overall care and talk to him/her soon about it, because I'm sure I'd feel at a loss about it all. It's good you're already collecting your medical records, so hopefully it can help you or your doctor to sort through it.

If the TIA diagnosis still stands, I'd definitely want to know why/how it happened since you're on lovenox, because I don't think that should have happened. And that ER visit sounds awful - I've been through that kind of thing where for some reason no one seems to effectively communicate with anyone, and it's not like you're in good shape to be making sure everyone is doing their jobs. Ugh! I hope you can sort through it all soon and that you'll be feeling better soon, from everything you're dealing with. I'm so sorry you're having to go through it.