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Old 04-25-2007, 12:14 PM   #1
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Agorazombie HB User
Blood Clot Advice Needed ASAP

Hello, I need advice please, last Thursday I was admitted to the hospital because after being given a ct scan w/ contrast the doctors said I had a blood clot in my jugular vein of my neck. I am thirty years old, non-smoker, I don't take birth control, etc.... I don't fit the profile, haven't had any injuries and there is no explanation for a blood clot to be in my neck. The doctors said it was weird and started me on Heparin.

I was given an ultrasound and they could not find the clot so they gave me an MRI and checked my brain and there was no evidence of any clotting and they gave me a vascular MRI of the head and neck and once again, no clot. At this point they had already started Coumadin and a couple of the resident doctors told me they didn't think I really had a clot and took me off of the Heparin. The head doctor freaked out and said, until they knew for sure, she wants me back on the Heparin because not doing so could kill me.

They gave me a lot of blood tests and were looking for genetic blood disorders but so far everything was coming up negative. They gave me an echocardiogram and several EKGs and everything looked good. They said I was healthy and that there was no explanation for a blood clot in my neck.

Finally, on the fifth day of being hospitalized and on blood thinners, they decided to repeat the initial ct scan w/ contrast and the next morning they told me they could not find a clot and that I could go home.

They took me off of the Heparin and said that I did not need to follow up w/ a six month regimen of Coumadin as they originally had said I would. I am so worried because I am scared that I am at risk for future clots and I am not being anticoagulated.

Where did this clot come from, can it just disappear and will I have another one?

I spoke to someone at the hospital and I explained to them how worried I am and if they would admit to me that they were wrong for initially diagnosing me w/ a clot that I would have peace of mind and that they would never hear from me again but they refuse to say that. They told me to follow up w/ my doctor and in the mean time I am living in a state of fear that I will end up suffering from a pulmonary embolism or something.

Has anyone heard of a clot disappearing so quickly or do you guys think I was misdiagnosed? I'm just so worried, I need some advice from somebody.

 
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Old 04-26-2007, 01:12 AM   #2
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Amy 333 HB User
Re: Blood Clot Advice Needed ASAP

I understand your concern.

The only thing i think you can do is ask for a copy of the first ct scan and show it to another dr in a different center for a second opinion. You have the right for a copy. . . even though they might ask you to pay.Though it will be worth it as you ll put your mind at rest.

Good luck

Amy

 
Old 04-26-2007, 11:29 AM   #3
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Join Date: Sep 2004
Location: North Carolina
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waterfairy HB User
Re: Blood Clot Advice Needed ASAP

I absolutely agree with the first poster. Having been told you have a blood clot and then having it disappear is kind of odd. I would definitely try and get a second opinion and go from there. Blood clots are scary stuff...dealing with one in my leg right now so I know. But definitely get another opinion, if nothing more than piece of mind.

Wishing you only the best,

Steph

 
Old 05-03-2007, 11:46 PM   #4
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Join Date: May 2007
Location: Thomaston, Ga. USA
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ingr2 HB User
Re: Blood Clot Advice Needed ASAP

Quote:
Originally Posted by Agorazombie View Post
Hello, I need advice please, last Thursday I was admitted to the hospital because after being given a ct scan w/ contrast the doctors said I had a blood clot in my jugular vein of my neck. I am thirty years old, non-smoker, I don't take birth control, etc.... I don't fit the profile, haven't had any injuries and there is no explanation for a blood clot to be in my neck. The doctors said it was weird and started me on Heparin.

I was given an ultrasound and they could not find the clot so they gave me an MRI and checked my brain and there was no evidence of any clotting and they gave me a vascular MRI of the head and neck and once again, no clot. At this point they had already started Coumadin and a couple of the resident doctors told me they didn't think I really had a clot and took me off of the Heparin. The head doctor freaked out and said, until they knew for sure, she wants me back on the Heparin because not doing so could kill me.

They gave me a lot of blood tests and were looking for genetic blood disorders but so far everything was coming up negative. They gave me an echocardiogram and several EKGs and everything looked good. They said I was healthy and that there was no explanation for a blood clot in my neck.

Finally, on the fifth day of being hospitalized and on blood thinners, they decided to repeat the initial ct scan w/ contrast and the next morning they told me they could not find a clot and that I could go home.

They took me off of the Heparin and said that I did not need to follow up w/ a six month regimen of Coumadin as they originally had said I would. I am so worried because I am scared that I am at risk for future clots and I am not being anticoagulated.

Where did this clot come from, can it just disappear and will I have another one?

I spoke to someone at the hospital and I explained to them how worried I am and if they would admit to me that they were wrong for initially diagnosing me w/ a clot that I would have peace of mind and that they would never hear from me again but they refuse to say that. They told me to follow up w/ my doctor and in the mean time I am living in a state of fear that I will end up suffering from a pulmonary embolism or something.

Has anyone heard of a clot disappearing so quickly or do you guys think I was misdiagnosed? I'm just so worried, I need some advice from somebody.
Heperpin is a very strong blood thinning agent and could have very well dissolved the clot or made it small enough to move it to some other location in the body. If the MRI didn't show the clot then I would lean towards the fact that the hepeprin dissolved it. I have a genetic disorder called "Factor Five Leiden Defect with Activated Protein C" this is a mutated gene that causes a persons blood to clot almost 10 times faster that a normal factored blood. Do you know if you were checked for this disorder? It's not very common but you should be tested for it if you are otherwise in good health.
It will cause a clot to occur just out of the blue. A clot in the jugular vein is very serious. Taking the coumadin for a few months won't hurt you if you monitor you INR levels closely. Your clotting INR range should be around 2 to 2.9. This means the time it takes for your blood to clot. If it is below 2 your blood is to thin therefore not clotting in a safe time frame to prevent bleeding profusely. If it is above 3 it is to thick and you are in danger of getting a clot.
This is just some things I have learned over the years. I was diangosed with Factor Five LD in 2000 after having a clot in my heart. I was 35 years old at the time. I would discuss this more thoroughly with my doctor or get a second opinion if you are uncomfortable about where the clot went. If you can't get them to admit that they misdiagnosed you should get your records and show another doctor. A second opinion can't hurt.
Judy

 
Old 05-03-2007, 11:51 PM   #5
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ingr2 HB User
Re: Blood Clot Advice Needed ASAP

Quote:
Originally Posted by ingr2 View Post
Heperpin is a very strong blood thinning agent and could have very well dissolved the clot or made it small enough to move it to some other location in the body. If the MRI didn't show the clot then I would lean towards the fact that the hepeprin dissolved it. I have a genetic disorder called "Factor Five Leiden Defect with Activated Protein C" this is a mutated gene that causes a persons blood to clot almost 10 times faster that a normal factored blood. Do you know if you were checked for this disorder? It's not very common but you should be tested for it if you are otherwise in good health.
It will cause a clot to occur just out of the blue. A clot in the jugular vein is very serious. Taking the coumadin for a few months won't hurt you if you monitor you INR levels closely. Your clotting INR range should be around 2 to 2.9. This means the time it takes for your blood to clot. If it is below 2 your blood is to thin therefore not clotting in a safe time frame to prevent bleeding profusely. If it is above 3 it is to thick and you are in danger of getting a clot.
This is just some things I have learned over the years. I was diangosed with Factor Five LD in 2000 after having a clot in my heart. I was 35 years old at the time. I would discuss this more thoroughly with my doctor or get a second opinion if you are uncomfortable about where the clot went. If you can't get them to admit that they misdiagnosed you should get your records and show another doctor. A second opinion can't hurt.
Judy
I gave you the wrong info about the INR. It is the opposite for the time. If it's below 2 it is clotting to fast and could cause a serious clot and if it's above 3 it is clotting to slow and could cause bleeding.
Judy

 
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