2016

I haven't posted new updates in a few years because there aren't many to post! I'm still very active, am able to do all the things I love, and have not had any recurrent clots.

I do, on occasion, still get color change with extensive arm exercises or certain yoga poses. But my normal color returns as soon as I stop that exercise. I have some residual numbness in my shoulder from the surgery. There are certain shirts that rub the numb spot and cause a tingling sensation- which is annoying, but not painful. And it only happens a few times each year.

I am thankful that I found a good team of physicians the first time around, but I was also seeking information and determining the best course of treatment on my one and comparing that to the one suggested by the doctors and surgeons (my research and their recommendations aligned).

If you have Paget Schroetter's (also called Thoracic Outlet Syndrome) hang in there! It can be a long road but you'll get back on track.

I still get alerted of comments on the blog and try to reply in a timely fashion. Hope this is helpful in knowing you're not the only one!

9 months and done!

I saw my surgeon for the last time and today had an Ultra Sound just to make sure everything is clear... and it was! Good pulses, no compression, and no clots!

I still have tenderness in my shoulder- it tingles when a scarf or piece of clothing is resting on it. And my whole arm turns blue with strain or when I put my weight on it (push ups, etc). But my surgeon expects that will happen for the rest of my life. There is no vein distention or swelling when this happens, just a color change that resolves within 15-20 minutes.

Please keep posting comments if you are diagnosed or know someone who is... I will continue to check in and give support where I can!

And with that... back to the regularly scheduled program :)

Post-Op and Networking

I had my surgery on November 16th and am doing very well! It went better than expected, the surgeon did not have to remove my first rib (yay!) and only released several tendons and muscles from my neck. I do not look any different (my neck is not thinner on one side or deformed in any way) aside from a small incision scar that will eventually be barely visible. The most significant pain I experienced occurred as the neuropathy lifted and I was able to feel my shoulder again (manipulating the nerves in surgery leaves temporary numbness, and in few cases can be permanent). Otherwise the pain has decreased significantly. I have started light yoga exercises to regain range of motion and stress. God, how I missed yoga! It's coming along and I'm hoping to return to work by the end of December if I am able.

During this process I have had the pleasure of meeting other unfortunate persons with the same diagnosis. I'd like to anonymously share their symptoms and experiences to further spread awareness of the severity of Paget-Schroetter's. The two women had color changes in the affected upper extremity, along with mild swelling, and distention of the veins (veins were sicking out as if a tourniquet were applied). Function was not impaired, and there was mild- if any- pain, so they did not seek medical attention. Most people do not seek attention for this particular syndrome for several weeks. The first waited months and until she had begun to experience a loss of feeling in her affected extremity and a slight loss in function. By the time she saw a physician the damage was permanent, she lost total function of her arm and has permanent neurological effects (memory loss, "cloudy" thinking, etc). The second woman waited several weeks, and although she had some slight neurological complaints, function and feeling of the extremity remain intact. Her physician was unable to remove the clot immediately due to damage to the affected vein. She has to complete 6 months of anti-coagulation therapy before removing the clot, and eventually proceeding with her decompression surgery.

Although this rarely takes someone's life, it definitely affects your life, and it can permanently alter it. If you experience any of the symptoms (change in color, increase in size, vein distention) seek medical attention immediately! It's better to be safe than sorry. Clots can occur anywhere in the body, and in many cases are life threatening (they are the causes of heart attacks, strokes, and pulmonary embolisms). Increasing your knowledge can safe your life.

If you know someone who has Paget-Schroetter's Syndrome please feel free to have them contact me through this blog, even if I do not know them. It is easier to go through this when you know someone else who has been through it.

Update

I finished my 3 months of coumadin and was referred to a Vascular Surgeon to discuss options for preventing a recurrence in the future. I've been doing a lot of my own research, and as I understand it surgery is the only way to guarantee prevention. So the date is set in November. The procedure will consist of a rib resection (may just shave it back, not completely remove it), releasing the tendon attached to my rib, and releasing the scalenes (muscles). There is no anticipated change in appearance, strength, flexibility, or range of motion once physical therapy is complete. I will be in the hospital for 3 days after the surgery, then out of work for approximately 6 weeks. Once I am cleared by my surgeon I will not have any restrictions on lifestyle, diet, activities, etc.

I will update after I am back to work and life as I knew it.

I hope this information will be helpful to someone in the future. I found few resources from people who actually had Paget-Schroetter's, most of my knowledge comes from scholarly journals. Hope my experience can put someone's mind at ease and help raise awareness!

My Story So Far

Saturday, July 2, I went for a swim in my development's pool. I am an active 26yo female and swimming a few laps sounded like a good way to start my day. About 8 laps into my swim I felt like I pulled a muscle in my left shoulder and thought nothing more than, "I should have stretched before I started." But when I got out of the pool my left arm looked dusky/blue, which I thought was odd, but attributed to the cold pool. I got in the shower and when I got out my arm was PURPLE and started to feel full, it felt swollen although you had to look closely to see that it was slightly larger in the bicep area than on my right side. I drove to my parent's house where myself (an RN), my mom (RN), and my dad (EMT) examined my arm, which at this point also had veins that were popping out. We knew the signs of a DVT (deep vein thrombosis/blood clot) which include:

1. COLOR CHANGE- usually reddness but can be blue/purple/dusky

2. SWELLING- can be minor to severe

3. DISTENDED VEINS- veins in your arm are sticking out or are showing more than usual (my lower arm from the elbow to the hand had veins sticking out, but my upper arm you could see them all, but they weren't protruding).

We decided that because I have the three big symptoms we should go to the ER "just to make sure it's not a clot." My mom and I literally walked out the door saying we'll be back in a few hours, there was no way it could be a clot... what 26 year old gets a clot in her shoulder?

I went to the ER of the hospital at which I work and was lucky to arrive at a time when no one else was in the waiting room! I went right back and the long and the short of it is this: 2 hours after feeling my "pulled muscle" I was told I have a 10-cm clot in my left shoulder (left subclavian DVT) diagnosed by ultra sound.

For those of you who want to know the details of what to expect in the ER, you will be asked for an extensive personal and family history including ethnicity, medications, history of clots in yourself or extended family. Blood work will be drawn looking specifically for clotting factors, but general lab values will be looked at as well. An IV will be started (hospital policy, you have a clot, you need a line in case of emergency- don't fight it, you are at risk). If you're diagnosed a number of other tests will need to be completed- possibly more lab work (I was tested for multiple clotting disorders- Factor V was among them), rectal exam to check for bleeding (you will need to be started on blood thinners, this must be done to ensure you will not bleed out from your lower GI tract. It's quick and painless, just awkward, you'll live through it I swear- again, don't fight it, it's for your own safety). Cat Scan with IV dye is another possibility for a better view of the vein. And finally, you will most certainly be admitted for observation and anticoagulation (blood thinners- which can include heparin drip/IV, Coumadin pills, and/or Lovenox injections).

My family does not have any history of clots or clotting disorders, I have never had a clot. I am a healthy, active 26 year old female with minimal health history. My only risk factor is birth control patch... which, let me say, is not the cause of this clot. Although they can happen anywhere in your body, when birth control is a factor it is much more likely to happen in your extremities. I stopped "the patch" in the ER for my own safety since I had a clot at this point. Talk to your doctor if you have concerns about birth control and blood clotting, this was not a factor for me, but they can cause blood clots and females should be aware of the symptoms and seek medical attention immediately.

My doctor was chosen for my because he "has a passion for clots." Sounds funny I know, but he is known to be one of the most brilliant physicians at our hospital and if clots is his thing, I was more than happy to have him following my case! He diagnosed me almost immediately... although this is a rare diagnosis, I had a classic case. 

I had a Cat Scan which did not show what they were hoping to see, although Paget Schroetter's was still what they expected. I was scheduled for an Interventional Radiology procedure- a catheterization where they were going to go in to remove the clot with a potent clot-busting drug, fix the vein if possible, assess any damage (thrombectomy with angioplasty and TPA). I was not eligible for a stent- if the stent was placed where the bones are clamping off the vein, over time the bones will clamp off the metal stent which could be even more dangerous.

The cath wasn't bad at all, there is no anesthetic but they use sedation. I was awake for the whole procedure, but you don't have to be. Being a nurse I wanted to see everything! So I asked the doctor about a thousand questions, but thanks to the drugs did not care one bit about what was happening. He could have cut my arm off and I would not have thought twice.

A few hours after my procedure I woke up and had to urinate, so I went into the bathroom and peed blood. Not red-tinged urine, not dark urine, dark brown blood. This was an unfortunate effect from the clot-busting drug (TPA). Thinking back, the fact that it was brown and not bright red was a good sign (means it's old and most likely not an active bleed) but try convincing yourself of that when you're the one experiencing it.

A moment on the emotional effects of this diagnosis... I didn't sleep the first night in the hospital. I had someone stay with me each night (my boyfriend who gained an immeasurable amount of brownie points stayed most of those nights with me) and cried every night. I was scared to death to fall asleep for fear that I might not wake up. And once all the visitors were gone I realized the severity of the situation and could not keep the tears from flowing. The doctors tried to help calm my mind, telling me the chances of the clot traveling (stationary clot is called a thrombus, moving clot is embolus- embolus is what causes pulmonary embolism, heart attach, stroke) are extremely rare with a subclavian DVT. That was good to know, but I was already batting 1,000 for rare events in the last few days...

The hematuria (blood in urine) cleared up over the next 16 hours and I was released from the hospital with a list of follow up appointments (urology among them) and instructions for self-injections of Lovenox and taking Coumadin. Lovenox is necessary until Coumadin has reached a therapeutic level. It feels like a bee-sting... kind of burns, but it is a necessary evil. I will be on Coumadin for 3 months (can be up to 6 months).

Besides being deconditioned from a week in the hospital, my arm is getting back to normal... it's not 100% yet, but it's on its way. I'm not therapeutic on Coumadin just yet (I have to get my INR checked- a blood draw- every 3 days until it's at the right level, then it will be less frequent blood draws) so I'm still giving myself Lovenox injections in my abdomen twice a day... that's difficult, but hopefully it will only be necessary for a few more days.

If you were recently diagnosed, hang in there. You're not alone. And you'll be okay. If nothing else, whether you have Paget Schroetter's or not, please just walk away from this knowing the signs of a blood clot:

1. COLOR CHANGE

2. SWELLING

3. DISTENDED VEINS

You should seek medical attention with these symptoms. And DO NOT apply heat or massage the area. You can move your arm, but do not do any lifting/working out/etc. You want to stop what you're doing, protect your shoulder, and go to an ER. Remember this can happen in your arms and legs. If you have any chest pain, shortness of breath, dizziness, vision changes, memory changes, or weakness on one side of your body call 9-1-1 immediately. These are signs that the clot may have moved.

Do not feel bad about going to an Emergency Room if you're not sure if you have a clot. If you have the above symptoms it's better to be safe than sorry. If you go and  you do not have a clot, you still made the right choice by going. This is not something to fool around with, clots can take your life. 

My medical knowledge probably saved my life. 

Let this knowledge save yours too.