Clot in arm

[Hyacinth]

Anyone ever experienced a clot in the arm or hand? I was having pain in my arm, from the elbow down to the hand and it seemed like the whole area was swollen for a few days. There was one particular vein area that seemed to bulge for that time period, but now it seems to be better. Could this have been some sort of small clot?

[Guest rhosyn]

Yes!.....but don't let my story and medical history alarm and frighten you...........

Mine is an unique case and extremely rare - I was the 4th known case of this kind of thrombosis in the world at the time. Medical papers have been published about me and a book has been written regarding my illness - further information (although very 'sketchy') available for those who requests it.

I had a clot or 2/3/4/5 etc in both arms............plus several other parts of the body including severe DVTs in both legs, where the circumference of my upper legs at their worst, were 4 inches more than my teenage daughter's waist!!!! Yes, honestly!!!.....and all the swelling in my legs and other parts of the body was all down to masses of blood clots. The pain was excrutiating to say the least. I couldn't bear anything touching any part of my body, especially my fingers and an extremely high dose of morphine (150mgs daily and as high as a kite!!!) and liquid oromorph did nothing to eleaviate the pain.

Mind you, I was seriously ill at the time and was told, months later, that had treatment been delayed another 2/3 hours, I would not be here now writing this reply. My blood had all but congealed to one solid mass!

I was told that the clots (of differing sizes) had travelled up from my legs, through heart/lungs (one or other or both - can't remember now) down to elbow/wrist level in both arms. Because of the severity of the problem and a delay in treatment, (GPs at the surgery kept me in pain for a fortnight before referring me to a specialist), this resulted in the loss of the tips of all fingers bar the left thumb. The right arm was more 'clotted' than the left, and the tips of all fingers on this hand had to be amputated at the first joint. My toes were similarly affected, but to a lesser degree and with no amputation. A filter had to be inserted into the juggular vein at neck level and pushed down to lower abdomen/groin level to stop any more clots moving up the body.

This was during the early months of 1997 when I was 46 years old. I was in hospital for 3 months on heparin drip and warfarin tablets (13-15mgs daily) and my blood was still clotting. A great deal of tests and research were carried out at the time and for 18 months following hospitalisation. The only virus/infection they could find was 'Parvo Virus' also known as 'Slap Cheeks' in children. (Probably caught the virus from one infected child - I am a school teacher) This virus had gone wild in my system and had triggered off what is called 'Anti-phospholipid Syndrome' (Sorry to all medics if the spelling is incorrect) where antibodies in my system could not distinguish between self and foreign agents, and were busy attacking my organs.

It took me 12 months to recover sufficiently to be able to return to work and about 2 years after the onset of the illness, I was told that the 'problem had cleared' and that there were no more clots in the blood (although no scan was carried out to prove this[???]) I was also told that I would have to stay on warfarin for life. There has been no real follow-ups since then except for my regular INR testing so I am not totally convinced that 'all is clear' although I lead as normal a life as the next person.

What worries me, though, is my lack of knowledge, especially as regards to certain things I have picked up on this site tonight (this is my first enounter of the site) regarding the taking of warfarin.

No one informed me of foods that could counteract the effects of warfarin and no one has warned me either of the side effects of being on long-term warfarin.

If anyone has any information regarding these points (or of sites where I could look up for myself) I would be pleased to hear from you.

Looking forward to exchanging information with whom-so-ever that is interested.....

Edited August 3, 2005 by James

[Hyacinth]

Wow!

What a sad story, though I am so glad that you pulled through.

Do you have PSD and that is what caused such extensive clotting throughout your body? (I assume since you are on this website that it was the case).

I was not told anything about foods or medications that could interfer with my medication either. I think most people just have to look for this information on their own and this website really helps with that.

I found out that heparin drains the calcium out of your body very fast recently. I was not taking any supplements.

Anyways, thanks for that information about the arm clot. Mine has gotten better since I am on medication. It was not so serious I think, but the hand is still stiff on top(where the main vein is, which is still swollen as well). It feels much better than it did! It has taken almost 2 months to get to this stage. I cannot believe how long it takes for things to go away.

Again, it is wonderful that you recovered so well! Amazing. Good luck with your research regarding what not to eat.

[Guest TMorgan626]

I have a blood clot in my arm, it has been there since Feb of this year. I also found out I have a rare clotting disorder I am Homozygous Factor V Leiden and have MTHFR mutation which increases my clotting chances.

I am on high doses of Coumadin that does not seem to be able to over power my blood enough. The Dr's have been increasing my dose every week after my INR test, I hope that does not contiue much longer, and also on high milligram pain meds because my arm constantly hurts.

You can email me directly if you think I may be able to answer some of your questions or post a reply.

[Juwels Morrison]

My hematologist told me to keep eating everything as normal...in moderation that is. He said he would adjust my warfarin levels as needed. He didn't even mind if I had a beer or two on special ocasions. Never have too many drinks or drink a beer or two on a daily or even weekly basis. I still ate atleast 4-5 salads a week and everything was fine.

[Hyacinth]

I think moderation is the key in our position. I do not normally eat lots of green things. They just turn me off, so I figure why force myself! I like to eat naturally.

When I was younger and would drink I would more often than not get petechae afterwards and always took it as a sign that I had overindulged. From what I understand, maybe I was overindulging just a bit. I know now that I have to limit myself when it comes to alcohol.

[Guest Mai Nata]

I had a clot in my right Subclavian (upper arm) about a year ago (since sept 04) and yeh i had similar symtoms, but most of them have stayed with me unfortunately (swelling, colour change, pains in the elbow) i've been on a high dose of warfarin at around 7mg, but i was on clexane and warfarin(7&8mg) in my first 2 weeks after they found the clot.

My doc gave me a book on what to eat in moderations, it was mainy anything high in vitamin K they said not to eat too much of.

[Hyacinth]

I know I probably complain alot.....but lately my left arm has been swelling(like if you eat too much salt and do not drink enough water)..I was trying to hold off on taking aspirin but last night I had to take another one cuz my arm felt swollen again. Today I was rubbing it and found a bulge on the top of the joint area on the elbow. Can this be a clot or just a swollen gland?? I am really unsure what a clot is supposed to feel like.

[Guest sandy]

hi, my name is sandy i'm 36 and live in lincolnshire england. on december 18th 2005 i had an emergency ceasarean section at 29 weeks pregnant. 9 days after having my daughter i had an arterial clot on the inside of my right elbow 6 hours later i had a clot on the right side of my wrist. the next day i had a clot on the left side of my wrist. the day after i had another artererial clot inside my elbow. in all i had 5 operations and was in intensive care for 2 weeks. up to date i have no idea as to what has caused this to happen to me other than being told that pregnacy could be a factor. 10 years ago i had a stillborn son my oldest daughter was born in 2002 after only a few minor difficulties. there is no history of anything similar happening in my family. i am on a mission to find answers as i have been told over and over that i may not get to know what happend.

[Zarin]

Hi Sandy,

with your history, it would be prudent to get tested for blood clotting disorders.

[Guest sandy]

hi zarin

i had blood taken and sent for 'specialist' tests so far the results have been inconclusive.

[Zarin]

Hi Sandy,

Be persistant. How much blood was taken? To get a comprehensive clotting profile done, you actually need to have about 1/2 a pint taken. Be sure to carry a fruit with you as you will feel faint afterwards.

[Guest sandy]

hi zarin

while i was in intensive care i had loads of blood taken and sent to another hospital for the specialist tests. i see my consultant again in july so i'm hoping he will have some answers for me at last.

[Guest Lisataylor]

Hi Sandi

I totally understand where your coming from. At 14 i had a clot in my arm. I suppose by now they would of told you that its a rare occurance in people with no known disorders. I was lucky that my parents where determined too find answers like you were. The doctors seem too think our understanding on situations isnt important! Please pursevere! Doctors like us too be involved in caring for our health but never want too involve us with test resultsetc! take care and good luck!

I had similar symptoms after having a clot in my arm. Cephalic vein thrombosis! Has anyone ever had one? id be happy too hear from you!

Basically , swelling and pain ring alarm bells for clots especially if your risk factors are high. Although having said that , i had my first clot and it was in the arm at 14. I had never even heard of clots before then. Its wise too get it checked out , as they say better too be safer than sorry!

[Guest sandy]

hi lisa

thanks for the reply. i have been told over and over how rare my 'condition' is. i'm lucky in that my consultant is as interested as i am in finding a name for it! i had more bloods taken last time i saw my consultant as yet i have had no results. i'm determind to get to the bottom of what happend to me. i have 2 girls who need to know if this condition can be passed on to them or their kids.

[Hyacinth]

Hi Sandy and Lisa,

Sorry you are having these problems too!

All I can say is just keep pestering your doctors.

Do you suffer from varicous veins? I recently developed them this past year. My mother said she developed them while pregnant.

My mother hemorraged alot(while pregnant with me as well), and lost a baby as well. They do not know why, but it might be von Willebrand's....but it is her side of the family that passed on the PSD too.

I have been just diagnosed with von Willebrand's disorder, where you bleed too much.

The past months have been very bad for me, stroke, things that seem to be clots in the veins and sever pain in my left lower leg, swelling of the left leg and arm(same arm that I am sure I had a clot in many months ago)!

My doctor has no idea what is up with my system. I am now going to get checked out by my gynecologist to see if I have bleeding inside the womb/endometriosis or cysts.

Just have to keep looking for answers...

Oh and I was put on blood thinner aspirin(Albyl-E) for the stroke symptoms. It really helps the pain and clots. I just take 2 or 3 times more what is prescribed depending on how sever the symptoms are.

[Hyacinth]

After looking on Wikipedia about the cephalic vein, I am almost certain that is the vein that was enlarged.

It seems surface veins can get clots in them as well.

Up-close pictures of the veins of the arm:

http://en.wikipedia.org/wiki/Cephalic_vein

In the leg: This is where I recently had a small clot form!

http://en.wikipedia.org/wiki/Small_saphenous_vein

[Guest sandy]

hi hyacinth

so far i've not suffered with varicous viens. i also take a daily dose of asprin and warfarin. yesterday i was told i am anemic and my thyroid is underactive. i still havent had any results back from my blood tests but i'm hoping that something will come of them

[Hyacinth]

Hi Sandy,

Alright. I suffer with anemia at times too, but take a dose of iron every day. there are brands that are easily absorbed. slow-fe they are called I think.

Hope your results come in soon and they can give you some help!

[Guest Lisataylor]

Hi ,

i hope your blood tests show something!

something strange , im severely anemic also to a stage where ive had too have iron infusions by drip. Is this common amoungst people with blood clotting problems? ive never thought too ask my heamotologist but he always seems too test for it!

thanks

[Zarin]

Hi Lisa, I think in some way it is related, if you happen to be a woman and are still menstruating. Being on anti-coagulants will increase the blood flow. I used to have iron shots way way back, then I had a hysterectomy and ever since then I have had no problems with anemia.