[NA] I feel so helpless...

AuntPeggy

Final Approach
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Can one of the docs tell me where to go to get information on a condition like this?

Our youngest son is in his mid-twenties. He's a pit boss at a casino, so he spends most of his days on his feet, but it isn't a physically strenuous job. For the past 3 weeks he has been complaining increasingly of pain in his left arm. When the problem started, he went to the emergency room where they examined him for a heart attack and sent him home with pain killers. Later, he went to see his GP who oversaw his birth and has treated him off and on for the past 25 years. He decided at that visit that she has grown too old to be trusted with his health. But she recommended he see a chiropractor, which he did. The chiropractor tried to help, but the problem continued to increase until Saturday when he found he didn't have the strength in his left hand to hold the deck of cards he was dealing.

He went to the emergency room immediately, the third ER visit since this problem began, and was given more pain killers and a brace for his arm. The pain became excruciating and his arm went numb on the drive home and when he got there, he pulled the brace off to find his arm was half purple and half green. He phoned us and we told him to get back to the emergency room and get an ultra-sound of his arm. He was so scared.

Around midnight, his wife called to say that the ER was arranging an ambulance to take him to another hospital. An ultra-sound had found a blood clot spanning from his elbow to shoulder. Today, his sister told us that the clot is in a vein, he is on massive blood thinners, and if he had been any older, his capilaries would not have been able to carry enough blood to save his arm. She added that he has spines on his neck vertibrae that will need to be removed sometime because that was the cause of the clot.

All this is just beyond comprehension. Can you guide me to where I can learn more about this? We are 1000 miles away. He can't have visitors.
 
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Wow. What a story. No help here other than moral support, and the sincere hope that the medical folks get it sorted out for the sake of his physical health and your state of mind. It's hard to see your kids suffer, and we've had too many of those already. Take care of yourself and best wishes to all as you deal with this setback.

Wayne

Can one of the docs tell me where to go to get information on a condition like this?

Our youngest son is in his mid-twenties. He's a pit boss at a casino, so he spends most of his days on his feet, but it isn't a physically strenuous job. For the past 3 weeks he has been complaining increasingly of pain in his left arm. When the problem started, he went to the emergency room where they examined him for a heart attack and sent him home with pain killers. Later, he went to see his GP who oversaw his birth and has treated him off and on for the past 25 years. He decided at that visit that she has grown too old to be trusted with his health. But she recommended he see a chiropractor, which he did. The chiropractor tried to help, but the problem continued to increase until Saturday when he found he didn't have the strength in his left hand to hold the deck of cards he was dealing.

He went to the emergency room immediately, the third ER visit since this problem began, and was given more pain killers and a brace for his arm. The pain became excruciating and his arm went numb on the drive home and when he got there, he pulled the brace off to find his arm was half purple and half green. He phoned us and we told him to get back to the emergency room and get an ultra-sound of his arm. He was so scared.

Around midnight, his wife called to say that the ER was arranging an ambulance to take him to another hospital. An ultra-sound had found a blood clot spanning from his elbow to shoulder. Today, his sister told us that the clot is in a vein, he is on massive blood thinners, and if he had been any older, his capilaries would not have been able to carry enough blood to save his arm. She added that he has an extra rib on each side that will need to be removed sometime because that was the cause of the clot.

All this is just beyond comprehension. Can you guide me to where I can learn more about this? We are 1000 miles away. He can't have visitors.
 
Peggy we'll keep you and your son in out thoughts. I wonder if its a DVT, that sounds like a huge clot! A friend was just released from a local hospital for a bunch of clots that they think formed as far back as July when he suffered a hard blow to his leg.

FWIW he was in ICU for a week and was just released as the blood thinners are doing their work. I would think that your son's young age would really be a big positive for him. perhaps if you post his location one of the members or Docs here can recommend a Physcian for him when he gets out.
 
Not a doctor, but I see rat poison (Warfarin) in his future for a while. I had a pulmonary embolism in August and I'm taking that stuff for at least 6 months to prevent new clots while the old ones dissolve on their own. Glad he finally got it diagnosed correctly and they're treating it. Best of luck to him.
 
I'm not a doctor, and can't help much with the specifics. But...
The good news is that they now know something is wrong and aren't just sending him home with pain killers. And the better news is that the first hospital realized that he would be better off if they sent him somewhere where they knew what they are doing. That's a big step in the right direction - really (been there done that).

Hang in there.
 
I'm not a doctor, and can't help much with the specifics. But...
The good news is that they now know something is wrong and aren't just sending him home with pain killers. And the better news is that the first hospital realized that he would be better off if they sent him somewhere where they knew what they are doing. That's a big step in the right direction - really (been there done that).

Ditto that!! Peggy, our thoughts are with you all... glad your son paid attention to the symptoms and didn't give up in trying to find out what was going on! I think NOT knowing what is going on can be scarier than KNOWING.... now that he (and the docs) know, they can tackle it head on. ((Peggy))
 
Thanks. Your good wishes help.

I'm trying to figure out the best way to get to Tulsa, and when, since he is unconscious and couldn't have visitors if he were awake.
 
Peggy, at least they found it & have a chance to recover.

I knew someone who did lose a limb because the docs never found the clot.

I don't know that you'll ever know why. One of my co-workers has a 7 year old who had (similar) symptoms in her hand - an MRI diagnosed a very small clot pretty quickly. They suspect it was gymnastics but can never be 100% sure.

Prayers out to you and your family.
 
Turns out he has extra spines on his neck vertebra (not ribs, as originally stated) that the arm vein loops over and have now caused a kink, closing the flow of blood. He has had surgery to clean out the upper part of the vein, needs another to clean the lower part and a third to remove the spines. He is currently unconscious in ICU. We are considering a trip to Tulsa.
 
Peggy we'll keep you and your son in out thoughts. I wonder if its a DVT, that sounds like a huge clot! A friend was just released from a local hospital for a bunch of clots that they think formed as far back as July when he suffered a hard blow to his leg.

FWIW he was in ICU for a week and was just released as the blood thinners are doing their work. I would think that your son's young age would really be a big positive for him. perhaps if you post his location one of the members or Docs here can recommend a Physcian for him when he gets out.
Thanks, Adam, for pointing me to DVT. I have spent some time now on the Internet informing myself of this peculiar ailment.
 
Aunt Peggy said:
Turns out he has extra spines on his neck vertebra (not ribs, as originally stated) that the arm vein loops over and have now caused a kink, closing the flow of blood. He has had surgery to clean out the upper part of the vein, needs another to clean the lower part and a third to remove the spines. He is currently unconscious in ICU. We are considering a trip to Tulsa.
Peggy, that's good. Do NOT let them take out the first rib. That operation (Thoracic outlet syndrome) has a BAaaaddddd reputation.

Just go. You'll feel better even if he can't recognize you. Really. The docs also need to SEE the next of kin. It helps.
 
Aunt Peggy, know that we're with you in spirit, if not in body. As some of you know, Leslie's still trying to figure out the cause of this ongoing abdominal pain, so we have some familiarity with not knowing what the actual diagnosis is. Go to Tulsa, be there when he can have visitors, and let the doctors have a gander at his kinfolk!:yes:
 
Peggy,

Hope you're getting the info you need, and sounds like he's stable and our thoughts and prayers are for continued improvement.

The trip seems like a good idea. Please keep us posted.

Take care.
 
Especially acting as advocate. Do what Dr. Bruce says, go and advocate for him.

I'm thinking of you all in my prayers...
 
He is coming home now. He had 4 surgeries in 4 days. He won't be back to work for another 10 days to 2 weeks. It will take up to 6 months for the feeling in his hand to return. We are all relieved that he should be back to his old self soon. Thanks for all the good wishes.
 
Great news Peggy.
Glad to see he's on the mend.
 
That's great news, Peggy!! Wow, he made some remarkable progress, considering he was unconcious in the ICU last week! YAY! I can't imagine the relief his family must feel right now.
 
Peggy, I just read this and am so glad to hear that it seems to be working out well for him! That had to scare the daylights out of all of you! :)
 
Brook asked how my son is doing, so I thought I'd thank all of you who were offering your support through this ordeal. Thanks so much. You were a wonderful help.

He is getting feeling back in his hand and he is starting to find out how really scary his situation was. It was touch and go for awhile whether he would keep his arm. Also for awhile they were not sure he would survive and he is furious that they had him sign a DNR while he was so drugged up he had no idea what it was, nor did he remember it.

He has had some time to consider how lucky he is and that life is precious to him. My son grew up a lot in the last few weeks. We are proud of him. Looks like he completely dodged this particular bullet.

The kind of problem he had is pretty rare. 95% of the time, the treatment he was originally given would be correct, because usually the problem is a pinched nerve passing through from the chest to the arm. He turned out to be in the 5% who had a pinched artery. Turns out he is 1 in 200,000. Well, actually, we think he is 1 in a million, but what do we know? He is so very lucky in the choice of his wife. She is the one who insisted on an ultra-sound, which found the problem.

Thank you all for your good wishes and prayers.
 
Just remember, if you're one in a million and chinese, there's a thousand of you!

Glad to hear he's on the mend Peggy. That sounded like a very dangerous situation.
 
Peggy, I'm glad he's doing well. I'm glad for him and I'm glad for you. I nor anyone could imagine what it's like for a mother to face losing a child, even as an adult.

My oldest sister lost both her daughters years before she passed on earlier this year. Although her cancer was most certainly terminal, she had no fight in her. I don't ever want to see another mom face life that way.

May you have many years of joy watching him move further along in life.
 
Peggy, that's good. Do NOT let them take out the first rib. That operation (Thoracic outlet syndrome) has a BAaaaddddd reputation.

Just go. You'll feel better even if he can't recognize you. Really. The docs also need to SEE the next of kin. It helps.
Dr. Bruce, when you are right, you are right. We just got a call from David. He has an aneurysm in his shoulder and the surgeon who removed a piece of bone before now wants to remove his collar bone to get at the aneurysm.

What should I do?
 
You should ask if a radiologist or a vascular surgeon can place a Boston Scientific Stent within the aneurysm. We do this all the time for Aortic Aneurysms. Some of the ones in the upper body we can't do, owing to different anatomy of sidearms off the vessel, etc- but find a guy who does lot of them and see what he thinks of the angiogram.

Stenting is a "23 hour" in the hospital procedure and is done through the artery in the forearm or axilla (underarm).

I wouldn't let the orthopedist remove the collarbone until you have gotten the Vascular guy/ Invasive radiologist's opinoins as to whether this is "stentable".
 
By "remove the collarbone" y'all just mean "take it out, fix the aneurysm and put the collarbone back in", right???? :eek:
 
By "remove the collarbone" y'all just mean "take it out, fix the aneurysm and put the collarbone back in", right???? :eek:

brachialplexus_AliceRoberts.jpg

No. You can see how the collarbone and first rib are so close together, with the artery inbetween them. Surgeon removed part of the first rib already to stop the pinching of the artery into David's right arm when they removed the original blood clot that stopped blood flow to his arm and hand.
The collarbone (clavicle) is lying over the aneurysm, which blocks their ability to get to it and repair it. If they remove a piece of the bone where it presses on the artery, they will not replace it. I am wondering whether they would use some sort of 'bridge', but I don't know. I'm out of my league.

David has a rare congenital architectural anomoly. Very few people will have this problem.
 
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I would HOPE they could bridge that in some way... I mean, the clavicle holds up a lot of stuff! Sorry y'all are having to deal with this, Peggy. I don't know why, even if they broke it, they couldn't replace the section they took out (or couldn't break it, tilt it out of the way and then pin it back in place or something. Not a doc (obviously) but still...
 
I am asking for your good wishes and support.

David phoned to say that his problem has recurred. This is the third time in 4 years. He has had a vein transplanted into his arm artery and one artery is blocked with a blood clot reaching from shoulder to elbow. This is better than the first time when the blood clot reached from shoulder to fingers. The surgery entails running a probe through his heart into the arm and pulling out the clot, chunk by chunk. At this time, the walls of his arteries have become so fragile the surgeons don't know if the vessels can handle this or the next time it happens.

I don't want David to lose his arm, but now it seems to be more a matter of "when" than "if".

By the way, this is a one in a million birth defect. Very rare.
 
We are almost completely packed. The house is sold. We will be there for him just as soon as possible.
 
Its never easy when our kids are sick no matter how old they are. Your son is in my thoughts and prayers Peggy, hope this resolves quickly.
 
Prayers for you, your son and your husband (and your daughter). It is time to get out of NY anyway, so go.
 
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