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 :)
hey, i just wanted to say that i had a first rib resection March 15 2012 due to Paget-S Syndrome. I was 17 when i had the first clot in december 2012 and was diagnosed February. Thank you for sharing your story
ReplyDeleteThank you for sharing! How have you been since your surgery? Hope you've had a seamless recovery!
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ReplyDeleteMy daughter mackenzie had her first rib removed in february 2012, she had paget shroetter syndrome too...she has aching in the rib area when it is rainy...but she notices alot of shortness of breath...she had pulmonary emboli with the subclavain clot....did you have any shortness of breath, or do you think this is something we should check out????
ReplyDelete@ponderenmasse- I'm glad to hear she was diagnosed and received treatment! I did not have any shortness of breath. I would imagine the pain in the rib while it rains will be around indefinitely. But the shortness of breath should be checked out. That's one of the first signs of a pulmonary emboli, she could have potentially gotten another one, or there may be another explaination... but either way she should get it checked out. Everything from the surgery should have cleared up by this point. Your primary care doc should order blood tests (d-dimer) and/or a cat scan or V/Q scan (specific to the lungs), especially since she's already had a PE.
ReplyDeleteKeep us updated on here... it's good for us all to share our stories so we know we're not alone!
Hang in there!!
@ponderenmasse- I also want to stress that this should be followed up with immediately. Use your judgement, but those symptoms be worth a visit to the ER. Especially with the history of a PE. Regardless of whether you go to your primary care provider or the ER, do it soon!
ReplyDeleteGood luck!
Hey guys, I am very happy to have stumbled across this blog about PSS. My name is Justin, im 25 years old and a little over 2 months ago I was diagnosed with TOS after my arm swelled up and was red/purple in color. After seeing multiple doctors/surgeons/blood doctors etc it was determined that my subclavian vein was completely blocked (blood clot) no matter what position my arm was in. This was determined through the venogram. After a very big mess of doctors recommending all of the wrong things (therapy, stents, balloon's etc.) I ended up 4 hours away from home in Tampa Florida to see a specialist by the name of Doctor Illig at USF. This gentlemen told me I do indeed have PSS and that the first rib will most definitely need to be removed. Unfortunately since I did not catch the clot at its early stages breaking it down with a wire is out of the question. The plan is to remove the rib and hope that my vein opens up on its own again and if it doesn't hopefully my other veins will make a detour around the thrombosed vein that has the clot. If neither of these work back to the hospital for another surgery where they will pull a vein from my neck and loop it down to my shoulder. I have been on Coumadin for almost 3 months now and my surgery is a week away. I am very anxious to get this done and over with but I do know the recovery will be a while to get back to where I need to be in life. Anyhow, thought I would share my story and ill keep you guys updated as I go along. Thank you!
ReplyDeleteThanks for sharing your story Justin! Looking forward to hearing updates... hoping you're doing well!
DeleteThanks for having this blog. It's nice to know someone else out there understands what it's like to live with this.
ReplyDeleteI've now done my 6 months of anti-coagulation therapy and am awaing a venogram and then hopefully surgery to remove the rib. I live in hope that this will end the pain, the discolouration and the swelling on use/exercise.
Is there any chance of an update on how you are doing now post surgery and how fast you recovered from the operation?
Hi Frances! I'm glad you're on your way to recovery! Did you have your surgery yet?
DeleteAfter my surgery it took 6 weeks before I really felt like my arm was back to normal-ish... at least improved enough that I could go back to work. I would still have pain when turning patients (I'm a nurse), but it slowly faded over a few more weeks.
I do still get some discoloration when I work out but it returns to normal within a few minutes. My docs say this is common and will probably be around forever at this point. But it's not painful when it happens. I do have permanent numbness along points in my shoulder which spread down my chest a few inches. It's very sensitive at times, but doesn't cause me true pain.
Any residual issues have been mental... I've been afraid to get back into swimming and any exercise heavy on arm strength for fear I'll get another clot. But I've been getting back into it and despite the usual muscle sores the next day, I haven't had any other issues.
If you have any other questions please feel free to ask!
Good luck with your surgery! Keep us posted with your progress!
Hey, was just doing some research about PSS since I was diagnosed and ran across this blog. Wanted to share my story to see if anyone had suggestions/comments. I am 23 years old, always been very active. I use to do gymnastics and cheerleading. However for the past four years just done weight lifting and cardio. After doing a workout with cross fit which involved bench pressing and over head movement I had a sore feeling in my left bicep which felt like a pulled muscle at first so I ignored it. The next day it was swollen, I iced it and went to bed to wake up with my entire left arm through the back of my shoulder swollen to about 2-3 times the size of my right arm. I went to urgent care and they sent me to get an ultrasound at the hospital. I was diagnosed with Thoracic Outlet Syndrome. They put me on blood thinners for 8-9 weeks and then muscle relaxers for 2 weeks. I also did 6 weeks of physical therapy that resulted in more pain and now my back and shoulder is more painful. Then I saw a specialist to informed me that I had PSS and I should of received surgery immediately after my blood clot. I had a venogram and discovered my vein was 80% closed. He is a thoracic surgeon so he said he would do the part of the surgery where he removes part of my rib and muscle but he would need the vascular surgeon to assist him with cutting open the vein and removing the scarring and webbing that has occurred over time (3-4 months after swelling of my arm). After meeting with the vascular surgeon he said he would have to possibly remove some of my collar bone to reach the vein along with do an incision near my wrist to place a fistula for three months. Therefore, surgery consisting of three different scars. He encouraged me to do physical therapy with someone who works with athletes and knows what they are doing for three months before deciding to go through with surgery.
ReplyDeleteAny opinions or experiences like this? I have seen three different doctors and different opinions from each and I am not sure as to what exactly to do...
Hi Meghan! Thank you for feeling your story, I'm sorry you've had a difficult time with the next step!
DeleteI had an interventional cardiologist remove the clot through a cath (inserted a large IV access into my upper arm and threaded it up through my arm to the clot under x-ray technology and broke the clot up and removed it). After that I was on blood thinners for several months, then had my surgery. A vascular surgeon did my whole procedure, he would have been able to remove the rib or shave part of the collar bone as well, but luckily he was able to access the muscles and tendons he needed to without removing bone. So he just cut off a few muscles and tendons so they're not compressing the vein with certain movements. But I did go into the surgery anticipating loosing a rib and/or a piece of my collar bone.
Most of their plan sounds like it lines up with my story and the recommended approach in the research I have found. I would just question if they are able to remove the clot via catherization first, and what the need is for a fistula... I don't know what the thought process is behind that.
In an ideal situation you would have had the clot immediately removed, taken blood thinners for a few months, had the surgery to release the tendons and muscles (and/or remove some bone). Because it's been awhile your course of treatment may need to look different (they may not be able to remove the clot, they may have to let your body try to break it down on its own).
The best thing I can recommend is do your research. Know what the anticipated treatment course looks like. If your course of treatment needs to be changed, so be it, but do what you're comfortable with... but be your own advocate!
Also, go to big hospitals. You want to go where the best doctors in your area are. And if that means driving a few hours to get to a city hospital, it'll be worth your drive. My surgeons were not experienced with TOC, but they were well read on it!
Good luck! And please keep up updated!
K. is exactly right. I found a wonderful site when googling PSS spelled out support groups and found NO support groups except for TOS but scrolled down a little bit and found UCLA's TOS/PSS page of information to be seriously more detailed than it was when I was treated successfully (left arm arterial compression 1% of TOS vs. PSS 4% of TOS) there in 2006 and 2008. There's a great diagram too.
DeleteHi, one of my best friends has just been diagnosed with this (she hasn't called it by this name specifically, but it fits exactly with the descriptions she gave and everything I know about her). She woke up with a blue, swollen arm yesterday and went to the doctor's about it today. It's difficult to find any simple explanations of the disease and I am so, so worried about her. I'm not even sure if it is something I need to worry about, or whether now it's been diagnosed it can be treated and wont cause any more dangerous issues. She's a really active person- loves climbing, running, hiking, etc. Please could you explain what the implications of it are likely to be for her? Both health-wise and for her lifestyle? I'm really scared for her.
ReplyDeleteSorry if this duplicates, I tried replying and it didn't seem to work. Thank you so much for your comment! Your friend absolutely needs to go see someone about this, as soon as possible. Worst case scenario the clot could break loose and travel to her lung (called a pulmonary emboli, or PE), which can be life threatening. Although this is a rare occurrence, it has happened to people with this diagnosis. More likely what will happen is she will have permanent damage from the clot. Blood flow in this vein will decrease circulation to her arm, shoulder, and parts of her neck. She can have some permanent loss in feeling, and function. This part is not life threatening, but it can affect her active lifestyle. Hopefully by this point she will have gone to an ER, but if now, tell her to go today. I'm not sure where you life, but go to a large medical center. This is not a well-known diagnosis, and in smaller hospitals they may not have the knowledge or experience to deal with this. You want a medical doctor who's good with clots, and a well-known vascular surgeon (the surgeon will come in after the clot has been removed and she has been treated medically with blood thinners, the surgeon will cut tendons and muscles, and possibly remove a rib to ensure it doesn't happen again). Tell your friend good luck! And keep us updated if you can!
DeleteK.Osbourne, you are very correct that only you know your own body. Also, the doctor that told you as long as the symptoms go away, such as you mentioned with cleaning the bathtub, then it's ok. But just like you said, arm turning blue, or swelling, is not good, you should definitely get it checked out, or for the arterial pinch the symptom can be plain weakness and if you raise your arm above your head, make and release fists, see how long you can or can't do this, and look in the mirror, you'll see the color drain and your arm will be completely white. You definitely want to watch for that symptom, it is even more rare than PSS - just when we thought what else could be rare! Only 3 things go through the outlet 1. scalene nerve 2. subclavian vein, 3. artery.
DeleteI was diagnosed with PSS a little over 2 years ago. It was due to pressure from by pectoral against my T1 rib. I was very active, ran and lifted weights daily, and though I wasn't body-builder big, I definitely did enough bench press that the cause was fairly clear. I have to say, the most painful thing about being diagnosed, other than the subsequent surgery, 5 days in the hospital, and recovery time, is the feeling of helplessness. The realization that everything I have been doing to take care of my body is actually making it worse. I underwent surgery to have the rib removed, and was forbade from doing any over-the-head lifting. I spent three months post-op on Coumadin, and returned to the doctor after 90 days to see no residual clots. Fast forward two years. I still exercise regularly, though I don't do heavy chest exercises anymore. I have lost 20 lbs since surgery, mostly muscle as a result of leaner training. Within the last week, I have started noticing similar symptoms in my arm again. Not as much swelling as before, but distended veins and discoloration, as well as some tension/acute pain in my chest. What are the possible causes of this? Am I looking at another clot, or could this just be symptomatic of a post PSS lifestyle?
ReplyDeleteThank you for your comment! You nailed the feeling of helplessness. I can't tell you how many times I said, "well this is what I get for trying to stay in shape!" I was only half joking when I said it. And it took me a long time to get back into working out for fear it would happen again. I do still get symptoms, specifically with push ups, handstands (yoga), bench presses... sometimes I even get them when cleaning the bathtub! My surgeon told me that I may never get rib of the symptoms. Although the clot is no longer there, it's still a damaged vessel, and always will be. So, he told me that as long as the symptoms go away when I stop what I'm doing, then I'm ok.
DeleteBUT... you know your body. If you feel like your symptoms are lingering, call your primary care physician and ask for an outpatient ultra sound of your arm/shoulder/neck- and tell them to specifically look at the subclavian vein. Like I said, my symptoms have always gone back down, but I panic every time my arm turns blue, and would not hesitate to get it checked out just to be safe, because none of us want to go through that again.
Good luck! And keep us updated when you can!
The weird this is that I had no symptoms for two years, then started developing them again. Raising my arm over my head allows it to drain (before the surgery, raising my arm did little to relieve the swelling), but it seems to "refill" when i lower it. Is there a chance of my clavicle shifting and causing pressure against the muscles underneath it?
DeleteBased on your symptoms I would definitely get it checked out. Either head to the ER or call your primary for an ultra sound in the next day or two. ER may be better just in case it is a clot, because they can just admit and start the treatment immediately.
DeleteI don't know specifically about the clavicle, but you may have some tendons/muscles that are clamping it off. If your arm is refilling that quickly you may have a problem. My symptoms completely disappear when I stop what I'm doing (without putting my arm over my head). The fact that your arm "refills" may mean you've got another clot :/
Hope you're clear though, and don't have to go through all this again!
Just a quick follow up, I went back to the doctor for another vascular ultrasound. There was no sign of clotting. The doctor suggested that it could be some residual scar tissue that would only be visible with a CT scan, but the methods of removing it would likely be more invasive and could cause more damage than the tissue itself. He suggested that as long as I could live with the symptoms, and they didn't get worse, not to worry.
DeleteI would like to say in General, To All, be careful to select a doctor for yourself that treats more than 4 cases per year. Although, my 1st doctor was a renowned Vascular Surgeon, 4 people a year, was just not his specialty, nor anyone elses in the state of WV. The doctor that was super knowledgeable, for my other arm, treated patients like me PSS and TOS daily and was researching, new treatments... such as removing some muscle and a little of the nerve in the outlet. He was at UCLA, it was his specialty. Does anyone go to a doctor like this? Or mostly are you guys going to doctors that just treat PSS occasionally??? Thank you.
DeleteTo TheGreatAlbino, ref: your recurring symptoms after 2 years... it takes time for the body to adjust to the rib removal.. everything now has to "find a new place to lay" as my Dr. said... it may lay in a good place, or things (there are only 3 things in the outlet- vein- artery-nerve) may after movement and time end up placing itself or themselves in a painful area. So, just for awareness, 3 years after my right rib was removed came the pain of the pinched nerve in my neck and it was almost as if it were overnight. I'm told that's not unusual for things to problematically show up 2 or 3 years after something in the anatomy is removed or changed. Thankfully, for me.... after my left arm resection it has no side affects and it has been 8 years. My right arm, like I said, 2 years 2 months to be exact... the nerve began to be pinched from something, could be muscle, could be the way it has positioned itself against the clavicle. So, the vein is permanently damaged like K.Osborne mentions can happen and I live with 24/7/365 nerve pain from the outlet straight up the side of the neck since January 2004. 10 years. I have found some relief - enough that I'm not bed ridden and questioning my existence this way anymore, from a pain specialist that's very good and Risotomy? (sic) injections. That's steroids to suppress me from feeling the majority of the nerve pain as long as I don't move my arm much. He injects them between the C3 and C4 and C5. Without those, I don't know that I would be alive right now the pain was so debilitating. It's an option that I didn't know about for 6 years of hell until I found out. I'm just trying to avoid doing another surgery to remove muscle and nerve. I'm afraid it will get worse. My Dr. said try to go as long as you can b4 resorting to that surgery.
DeleteHi! Thank you for this great post. I will do the same to increase awareness!
ReplyDeleteI have had it and went through venogram and then angioplasty (50% cleared) but not yet 1st rib resection (will wait till 11 May 2014 too do a MRI (multiple position) to make sure if it's a muscle of bone pressuring and that the clot is 100%cleared. and take it from there.
I would like to know how you feel now after 2 years and are you doing sports, and back on track? Any pain? Any limitations?
How urgent Dr told you regarding your surgery? Can you not do it, since your clot is cleared?
Rgrds,
Hisham
Thank you so much for your comment! I apologize for the delayed reply. How was your MRI? Did you end up needing the surgery?
DeleteI feel pretty good after all this time. I have no restrictions and am able to do yoga, kayak, and I was taking Krav Maga for a few months as well. Although I don't have pain, when I'm doing activities such as push-ups- when there is a lot of my weight on my arms- my arm will turn reddish/purple. As soon as I stop doing whatever I was doing it goes right back to the normal color and there are no problems. I also have permanent numbness in that shoulder. It tingles when touched and feels kind of strange with certain clothing, but it's not painful.
My doctor was very clear that when a clot is present and after it's cleared, surgery is recommended to prevent recurrence if it's thought to have been caused by muscle/tendons/bone. And for me it was. I didn't need to have by bone shaved or removed. You, of course, always have the option to refuse, but my doctors were pretty confident that this could happen again, especially with how active I am. And I didn't want to risk another clot with complications (pulmonary embolism was the main concern).
The best thing I can recommend is to educate yourself. I read a lot on my own and my doctor recommended what I read to be "best practice" for this diagnosis. Get a second opinion if you're uncomfortable with your doctor or their recommendations.
Good luck! I hope you are making progress and feeling better!
Keep us updated! :)
Very Glad to find possibly the beginnings of a support Group outside of Thoracic Outlet Syndrome Support Group. PSS needs one too. 13 years ago, I was misdiagnosed at age 34 as having Carpel Tunnel Syndrome by a family practice doctor. My Chiropractor and husband told me that was CRAZY to get that brace off my arm immediately, it's obvious there is a vascular problem and constricting it with a brace will hurt, not help. I insisted to this Dr. I was concerned about a possible blood clot. The Ultrasound dept. scheduled me for one 9 days later. I protested and my Dr. said, well, that's what happens in small towns, sometimes we have to wait. I went to the office and lucky for me there was a snow storm and they had a cancellation. The ultrasound results were normal.... later the technician was fired. My right arm was 2 1/2 inches larger than the left. It was Red, Purple and Green veins bulging out everywhere. My Chiropractor told me he knew excellent doctors in his hometown he'd call them and see if they would see me ASAP, they said absolutely, it was a 4 hour drive and I was willing to do it because Carpel Tunnel? Nuts. I went to UPMC (Pittsburgh, PA). ER Ultrasound, and diagnosis of blood clot. Wen tot a follow up. They told me sometimes these things just happen. I researched that 10% of upper body clots are from another cause. My arm was still almost 2 inches larger and I couldn't sign a check. 11 months after the clot, I finally got a diagnosis at CAMC (Charleston, WV). By then the clot was hard as a rock and couldn't be fixed. So I lost the use of my right arm. They told me that eventually, more than likely my left arm would be affected. 5 years later, my left arm couldn't be counted on to hold my newborn baby after a couple months. The symptoms were different. It just fell to my side if I tried to lift something. So my right arm was then my "good" arm and it wasn't good. I was scared I'd drop my baby so my husband or older son, would pick him up out of the crib, walk down the stairs and hand him to me while I was seated. This way, I could ensure his safety. Turns out, the left arm was extremely white and I couldn't make a fist more than 3 or 4 times, or hold it above my shoulder more than a minute...this time the ARTERY was pinched. Thankfully, the only other person I'd ever met with PSS was my hernia doctor's wife when we moved to Alaska. She had it in her right arm at 15 and could cheerlead anymore but was not treated, and didn't clot, just restricted blood flow.
ReplyDeletecontinued.. She never did develop it in her left arm. After she had children and had to lift them, she clotted. Since her husband was a doctor, he had researched places to take her. The 2nd place they went was UCLA, and they were happy there. I had my 2nd rib resection there and they opened up the clot after 4 1/2 hours of angioplasty working it from the artery through the leg and the subclavian in the arm at the same time, and they wouldn't give up because they knew how much I wanted to get the use of my right arm back. They opened it finally. They said the opening they went through was smaller than a thread and their tools weren't that small, so they had to go at it meticulously, and safely at the same time. I was elated to have my arm back!! I could put my hair in a ponytail and not feel the immediate fatigue and desperation to put the arm down or it just numb out and fall down. But, 6 months later it had collapsed. I flew back from Alaska to Los Angles, CA again. $5,000.00 per trip in airline tickets, hotel, food and 4 hour drive to airport. So another angioplasty and it was reopened. One year later at my check up, and again $5,000.00 in expenses that aren't medical bills, it had collapsed again. I knew it had, by how I was able or not to use it. So it was opened and collapsed again, I can tell myself. By then, in 18 months, I had spent $15,000.00 on expenses to get from remote Alaska to UCLA and I financially couldn't do it anymore. The one good thing was they allowed me to go from Coumadin to Plavix. That was great! That was because all the collaterals had built up a "highway" system around the TO area. You can see them. Left arm looks normal, Right arm looks like the hulk, with green veins and it's still over 1 inch bigger than the left, so the circulation has increased, but not to normal levels. The doctors told me that for 6 years the clot had hardened and created scar tissue and the vein was just so damaged and fragile, it couldn't stay open. They also said a stent couldn't be used for the vein because veins are fragile and it could cause the vein to burst and/or dislodge and travel to my heart, so it's more risky than is acceptable. They say, however, that an artery could hold a stent because they are durable and larger. I think I went to the best doctor in the USA, who pioneers in this field. I'm happy that I'm off Coumadin. Even though I didn't get the use of my right arm back, at least I don't have to wonder anymore if I could, I know I went to the best, they did their best, and I just have to live with this arm the way it is. So both arms are weak for 8 years now and I'm left with the nerve pinching syndrome TOS symptoms and pain on the right arm that goes up the side of my neck, such tremendous pain, I couldn't get out of bed for over a year. I was quite suicidal. That was no way to live. My oldest son labeled me as "not there for him" and "lazy". Now he's 19 and he still feels the same. I raised him the best I could and everything was great until this. This PSS and Arterial TOS, and TOS changed everything. 2006 was when I had the left, 1st rib resection (right was in 2001) and he was 11 years old. BUT from 2004 to 2005 I was in such pain with the nerve pinching part, the onset of it, no one knew what it was and I was bedridden 90% of the time, pretty much. I became pregnant which was a surprise as my oldest son was an INVITRO baby, this was my first pregnancy naturally, I had been told I couldn't conceive. Naturally I was thrilled, but I knew and had been warned about Coumadin and birth defects so just in case of a miracle, I always was vigilant and they switched my medicine within the estimated 1 week late time frame, and the doctors said as long as I was switched to heparin before the 2 weeks late time frame, the baby should be fine from facial defects. My baby, Adam, is fine. No facial defects. I was lucky.
ReplyDeletecontinued....My oldest was 9 years old when the onset of the pinched nerve in the side of the neck happened. That's when he began labeling me what I said above. I thought I raised him better. I don't know where I went wrong unless it was apologizing for being sick all the time. I should have just sat him down and said, this is life, deal with it. Everyone else has to and so do we. Maybe that's what I should have done differently. He feels sorry for himself a lot. My little one, Adam, has been raised to be "gentle with Mommy" she has a back that doesn't work right, she tires easily and sometimes needs to rest, just to keep it simple... that was the explanation. That I'm sick but I'm ok. He's very understanding of this and he's about to turn age 9 and he's understanding, unlike my older son Nicholas. But, with both, I am unable to do the athletic things I would have done with them, all the things I did when I was in the Army, being physically fit, getting outdoors, those things I am unable to participate in, I go along and watch. It's very depressing. But, as I said earlier, in 2004, no one knew what the debilitating pain was in my neck. Not the Thoracic Surgeon, Not the Vascular Surgeon in WV who had diagnosed me with TOS, PSS in 2001, 11 months after the clot. It wasn't until June 2006, when I went to UCLA (referred by my hernia doctor, as he took his wife there for treatment) did I find out that after the 1st rib resection in my right arm, everything has to find a new place to lay and PSS patients sometimes then experience nerve pain for the first time. So that's what it was. I took Gabapentin and my arms felt like they were on fire from the elbows to the fingers. I was putting cold cloths on them to no avail, so an allergic or nondesirable reaction to the drug that's intended to reduce nerve pain. Years later I took Lyrica. I felt so good for 4 weeks I felt like I had been healed of this 24/7/365, bed ridden, debilitating pain! Yes! But then the 5th week, my vision began to blur which is a bad reaction and can cause permanent vision impairment, which I didn't catch onto until week 10, after I bought glasses as an eye exam showed I needed them to see distances, I saw the commercial about Lyrica and the caution of blurred vision to immediately quit taking it and contact my doctor. $400.00 glasses down the drain, my vision is restored, I don't need glasses, and can't take the Lyrica that helped my pain in the right side of my neck (the pinched nerve in the TOS). I'm on the East Coast now and haven't seen my doctor in UCLA since 2008. My left arm does not have a pinched nerve in the TOS, but the artery is still affected when I use the arm, just less than before, I believe no nerve pain -- that' s because UCLA doctor took out some muscle and nerve in the TOS during the rib resection in 2006 to loosen the congestion and that had not been done in my right arm during that resection in 2001. I can have a surgery that he offers where he goes in above the collar bone and removes some nerve and muscle, maybe that would stop the nerve pinching pain, that's the point anyway. I'm just afraid that something worse will happen when everything tries to find a new place to lay again. It has been 5 years now. I wonder if there are any new advances in technology or if my Dr. is now doing laser surgery for the procedure I just mentioned, to remove some nerve tissue and muscle tissue in the outlet on the right to relieve the congestion. This is my situation, my story. Things would've been much different for me if I had been diagnosed and treated early, rather than 11 months later, still walking around with a blood clot in my chest on Coumadin and no one could tell me why.
ReplyDeleteIt's very evident that early correct diagnosis and treatment is essential to successful treatment and potential to go back to living a normal if not semi-normal life. It's also very evident from the different stories, that PSS comes with a variety of different symptoms and aren't all inclusive for all. It's almost as if it's a pick and choose off a menu but your body chose without your knowledge until you were hospitalized with heparin treatment for a clot. I listed my symptoms above. But after I was diagnosed, I looked back and could identify "strange moments" that only now I know were early symptoms. They were.... 1. A strong sensation to raise my right shoulder up and backwards and that would create a bone cracking sound. It sounds strange but I complained of this to my fellow coworkers when I was teaching high school. We'd monitor the hallways during the 5 minute class changing and I'd just say, can you hear this or is it just me? and I'd do it. They could clearly hear the bones cracking. Turns out I'd later find out that was my 1st rib and clavicle rubbing together, when I moved my shoulder that way, thus, pinching my subclavian vein, damaging it unbeknownst to me. They asked me why are you doing that? I said it is really bothering me in the sense of really bad ache. Just like the feeling that your knuckles need to be cracked and the relief you feel once you crack them. That's the relief I feel once I maneuver my shoulder that way. #2...when using chalk to write a list of words on my chalkboard, I'd have to raise my arm up above my head to start at the top. After writing 3 or so words my arm ached. I'd have to lower the arm and shake it a little. It felt weak. I could no longer just write all the words I wanted. I thought to myself, wow, I've been out of the Army only 5 years and my arm muscles must really be getting out of shape, I should probably start working out again. Both symptoms 1 and 2 was 4 months before my clot actually surfaced. #3. Christmas Eve 2000, my dog, a Lab had 10 puppies that were about 5 weeks old. As usual, I went to the basement to check on the Mommy, feed them, and clean up the paper, sheets and replace them with new ones. The Mommy had escaped the large pen I had and peed outside the pen on the concrete. I took paper towels and started cleaning it up. A typical thing to do say, if you're house training a dog. Circular motions until all the liquid is absorbed, then sanitize and repeat. I could not complete the circular motions until the liquid was absorbed my arm just stopped working. I thought, that's weird!!! Seriously???? That much out of shape?? No way!!! I'm VERY active, can't be!! But my shoulder started aching and my entire arm ached. It was done. I realized I wasn't going to be able to finish cleaning it up. I went back upstairs totally puzzled. MY shoulder and arm MAJORLY aching still after 20 minutes. I was just in a little type of shock that my arm stopped working like that and there is PAIN? I went into the bathroom and took off my long sleeve flannel shirt and looked at myself in the mirror with my tank top on. I could see CLEARLY that my arm was red, purple, and had green bulging veins on the right for apparently no reason. The left arm was correctly colored, nothing out of the ordinary and didn't hurt. I was frightened. I then took my tank top off to get a better look. The green veins continued from my arm all over my shoulder and over to almost directly underneath my neck. More precisely I'd later find out the spot the veins stopped bulging was the Thoracic Outlet... right where my clavicle and 1st rib met. It was Christmas Eve.
ReplyDeletecontinued....Snow. Late at night. My husband asked if I fell, did I twist it? No I did not. We decided we definitely should get it checked if not gone by tomorrow after Nicholas opened presents. So, an hour later we were at my parents for Christmas Eve and I showed my Dad. Both he AND my husband said "that looks vascular" and serious. My only choice since it was the holiday was to go to the emergency room. I was wishfully thinking I'd give it one more day to go away, and just let it rest. Dec. 26th morning came and it was clear, if I did not use it, the pain would be gone.. but it was still HUGE, purple, red and the green veins... so I went to the doctor that misdiagnosed me. But those were the 3 symptoms I had b4 I landed myself in the ER by Dec. 30th, 4 hours away at UPMC. Within 30 minutes they said, you have a blood clot, admitted me, treated me with heparin for 2 days and released me. The doctor didn't understand why I could not see myself going to work Jan 2nd. I was shocked!! Why?? she asked. I said, I feel exhausted, I feel faint, dizzy, like I have the flu or I've been hit by a big truck. She said ok. 5 days off. I rested. I was exhausted. I can only imagine it was because of the heparin and getting used to the heparin shots they put me on for 2 weeks because I wasn't feeling that way when I walked into the ER at UPMC. I see everyone seems to have had different symptoms or a different VARIETY of symptoms but all have visually seen the change in color of our affected arm. Has anyone here experienced the Arterial pinch like I had/have on the left arm? Anyone with that diagnosis? I hear it's 1% of all TOS and PSS is 4% of all TOS. I hear the Arterial has the worst prognosis because it could mean amputation of fingers or more.
ReplyDeleteKathryn, I was 34 when I clotted Christmas Eve 2000. I was muscular, worked out a lot and built things with my arms, heavy lifting, no problem. It sounds like many of you were much younger when your clot or symptom presented itself. My doctor told me that this is the result of 1 of 2 things. Either #1 Being involved in some type of accident OR #2 Being an athlete either overusing the arms a lot, such as baseball, swimming, etc. OR being a bodybuilder, working out and building up that muscle tissue and thus, congesting the outlet. I was told by a doctor that treats patients here on the east coast... I've only seen him for a check up.... but he told me as a rule, not to raise my arms above my shoulders. In other words don't allow the congestion from the pinch, even though I've had both 1st ribs removed. For longevities' sake, you and other young people that have symptoms after treatment, may want to preserve your use of your arms for the quality of life in your future. A doctor on the West Coast told me that posture plays a big role in preventing the situation from worsening. Practicing good posture will help. He said, not the kind where they used to say that meant keep your shoulders back when walking... rather ..don't slump and focus on keeping the neck erect not slouching like. I'm 47 now, have not been able to work. Can't make a dinner that involves stirring, cutting anything with repetitive use of motion in either arm. Can't mop. It's not fun. Little Miss Independent is NO MORE. It's a loss for me because that's what I prided myself on. It has affected my relationship with my oldest son and my marriage. I'm sure it's no fun to be married to a wife that's disabled and the husband must do the cooking, cleaning and such. Just wanting to let anyone know what it could be like as you age. We all know posture for elderly goes bad. So, I wonder, if I'm going to be in more pain or worse condition at 67? So, my focus is going to be posture and not lifting my arms above my shoulders... it hurts anyway... so I won't, but my husband finds me sleeping with my arms above my head. That's a problem, I've yet to conquer.
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