1.5 Year Update After Having Surgery for Thoracic Outlet Syndrome
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- Опубликовано: 5 сен 2024
- Hello all! I wanted to do a video giving my updates after having surgery (1st left rib removal) for Thoracic Outlet Syndrome. I hope this gives some insight on what’s to come!
Let me know if you have any questions, and make sure to like, comment, and share!
I can totally relate to what you are going through and feeling such a loss because I can’t do what I could physically what I could prior to TOS. I have shoulder surgeries from my competitive swimming career which lead me to the TOS dx. I had surgery but it did not help much so I went through a grieving process to accept that I must take pain meds in order to have quality of life. Bless you kind woman and I hope you continue to feel better.
I can SO understand the grief! I'm living a different life now than I was before TOS, and the sense of loss is overwhelming.
Thanks for your videos and glad to hear you are healing, albeit slowly! I hope you will be able to get back to exercising as I know how frustrating it is not being able to. I have had nerve pain for 6 years and have been back and forth with a neurosurgeon due to my herniated disc (c5/c6). I finally got a 2nd opinion this year and had an ultrasound with suspected TOS and been diagnosed with Raynards. The ultrasound found I also have no blood flow in certain positions when raising my arm and I have been to see a vascular consultant today and told to do 3 months of physio before considering possible surgery. The lack of sleep from the pain and strength in my arm is hugely affecting me now and is much worse in the last year.
For all those in chronic pain, know you are not alone 💛.
The physio is definitely important, and I would definitely recommend physio before considering surgery in nTOS....It's not an easy path, but taking it one day at a time helps :) You are def not alone!
Are you doing better?
Thank you for posting. I'm 2 years out after surgery and ive been so anxious about the pain and discomfort. I always think its going to recur. This helps me calm down knowing that others are going through the same thing.
That's a legitimate concern, especially after dealing with pain for so long! Have you ever done some classes on chronic pain? They are really eye-opening!
@@thoracicoutletsyndromether8930 I havent but I am looking into it. I'm finally meeting with a vascular doctor next week as well to go over the pain and discomfort. My surgery was done due to a major clot and I'm beggining therapy for the anxiety I have regarding heart attacks and future clots as well. I wont let this dominate my life. Thank you again for posting. There is 0 videos like yours out there. It means a lot to someone like me trying to find answers.
Hi, I am having rib resection, tip of collarbone resection and a carotid subclavian bypass Sept 13. My TOS went undiagnosed for 3 years. I would like to thank you for your down yo earth relatable videos. I am super scared and nervous about surgery and post op but your videos have definitely helped to quell my fears a little. I truly appreciate all the info.
I'm sooo glad that these videos have helped you in your preparation for surgery! I hope all goes well for you, and your road to recovery is smooth from here on out! 💞
can you give us your update on your surgery?
How are you now
Bless you sounds like it still ongoing for you. This is my worry as waited 30 months to sort and my swelling and pain in my hand is getting worse. Botox worked on nerve pain but not venous side. Take care and keep posting
Very grateful for the videos!!!
Having my surgery in 11 days, the day after I turn 36. I have suffered from asthma my whole life so it makes me a little nervous going through with the surgery and the considerable SOB afterwards. I must say, I very much appreciate your post-surgery video and now this update. It does give me hope that I’ll improve although I tend to be a slow healer as well. TOS still seems to be a mystery in the medical community except for those select few that treat it more frequently. There is only one doctor in my area that does the surgery and according to him he has only done about a hundred of them. Here’s hoping 🤞🏽Thanks for posting!
Hello there! First of all, I want to wish you the best with your upcoming surgery! Since you have an existing breathing condition, please do check my earlier videos for that respiratory trainer (it helped me a lot). Let’s hope for the best that your recovery won’t be prolonged! 💕
Join the thoracic outlet forum on Facebook. Just had the trifecta 4 weeks ago. I had muscle wasting and its almost come back. I havent even done any strengthening. The trifecta involves the first rib removal, scalenes removed, and pec minor release. Only a hand full of drs in the country do all 3 in one surgery. But i cant afford to miss work. Goodluck. It isnt as bad as people say. It is hard to breathe after BUT sneezing is worst haha.
hi, any update?
Same here about when the weather changes or when I’m swollen from the heat! I’m glad to know I’m not the only one. Also, when I’m extra fatigued. I’m 10 Mos post-op.
I agree that it happens when extra fatigued as well. At least we know the triggers so we can prepare!
I would love more information about everything to do with your start which means from surgery till now . I’m having this surgery done in 17 days from today . I had breast cancer starting with double mastectomy in December of 2021 and had a long battle till April of 2023 . In that time frame of breast cancer I had 4 surgeries in 12 months , staph and 2 blood infection and was on antibiotics for 10 and half months 7 a day , then surgery on foot from meds I took for cancer. So any info would be great . I’m 1 and half year out from healing from all that and now walking into this surgery for TOS . Thank you for any information to help me
I am 32 years old male, when I turned 27 I started gyming, then after 2 months of gyming I noticed severe pain in both my shoulders from lifting heavy weights at jym, I'm short and skinny so I'm not the most physical person, that shoulder pain never went away to this very day, I have severe neck pain my neck can't move its extremely stiff and hurts and pains all day long the neck and shoulder and shoulder blade pain never goes away not even for 5 seconds, I first thought I had a broken neck I had 2 MRI scans done, I had over 14 xrays on my neck, I been to physio therapy I been to countless chiropractor sessions to no success, it's almost 6 years later and I feel like the pain gets worst every year that passes, I can't touch my left shoulder and near my collar bone it hurts really bad, I suffer from extreme headaches, migraines and I feel like my neck and upper back beneath the neck is always having inflammation and a burning sensation, when I wake up in the mornings I can't move for a few minutes, so I have to lay motionless in bed before my hands and wrist gets it's feeling back, like it's numb and a tingling feeling, but that numbness normally goes away after afew minutes after I just woke up it's weird.
, Im starting to think this condition you have might be the same what I'm going through.
If this is the same condition that you have then I can honestly say I know exactly what you been going through before you had your operation, I thank you for making this video I don't know you but I can relate to you and your pain, I also use a heating pad and for me it doesn't help that much, but yeah just take it easy DON'T LIFT ANYTHING REMOTELY HEAVY THAT'S MY ADVICE TO YOU
You have some symptoms that are very similar to what I’ve had. I hope you find the relief you’re looking for! 💕
Me too
I read about Dimethyl sulfoxide(DMSO) gel or solution to help with pain and the possibility to mix it with castor oil for better results.
Turns out that it started raining this afternoon, so the pain I had yesterday was due to barometric pressure changes….my arm knew rain was coming! 🌧
How is pain management? Have you started your antidepressant medicine for pain purposes? Is it helping? How many pills of painkillers do you take per week? And compare before surgery?
I have been having a TOS for 5 years already. Recently it is getting worse,so I am researching different options including surgery. Your videos are amazing
I can't thank you enough for your videos! Seriously I have been binge watching them now (lol) as I lay in bed 10 days after my surgery. I had the exact same surgery as you, left side axillary incision, with a great amount of scar tissue during the scalenectomy. My TOS went undiagnosed for 10 freaking years! Until i hot a DVT and was wrongly diagnosed then finally reached the diagnosis 2 years later and just got my surgery. Your videos have really helped me with my expectations as well as letting me know a lot of what I'm feeling is normal. If you don't mind, I had a few questions:
-What about tingling and numbness? My hand and finger tips are still very numb and I don't really have the best motor function with my nerves yet.
-Did you eventually get back to sleeping on your side? Using the same cervical pillow you talked about?
-Also what about carrying heavy stuff? I have a baby (~20lbs) and I'm supposed to get back to carrying him at the 2 week mark. I'm scared it will be too hard, also worried about the healing and the scar of course.
-Do you have days when you completely forget about the pain?
- From what I understood here, you can't really do upper body workouts/sports? What about swimming? And even leisurely for a short time?
Thank you so much in advance and I hope I don't trouble you too much.
Oh my gosh, you've been through the ringers! Hopefully I can shed some light: 1. I still had numbness and tingling for a while. I ended up having another procedure done (which I've debated about sharing) which ended up resolving a lot of it. Now I only get that if I irritate that nerve with repetitive motion. 2. I do now sleep on my side. I used a cervical pillow until I moved about a year ago, but I've been doing ok. But if I've had an achy day because of the weather, I'll try to start off on my back instead to sleep. 3. As far as carrying heavy stuff, it took a while, but now I can. 4. yes, definitely have some pain-free days. 5. Still no upper body workouts, but I've also focused more on lower body when I have. I can cycle and can grip the bike handles without going numb, though! I could not handle the overhead or shoulder-height motions of swimming, but that could be from all the decompensation from not using it over the years. Doing exercises to strengthen my shoulders and back should be the next step for me...hope this helps!
Me too. Undiagnosed more than 10 years. I was in a trauma at first and had surgery in my neck were they put in a artificial disc. They missed i also have vascular and neurogenic TOS.
How are you now
I had to go back and see your video again to remember everything you had said I take Symbolta (duloxetine)60mg daily a Muscle relaxer and low dose pain med twice a day and mine is 50% better except when it gets cold or raining i move to the desert from to Washington State for that reason. Will not take Gabapentin alot of people can develop problems with this drug Doctors will say it's safe because thay don't want to perscibe pain medication for anyone. I will be keeping you in my prayers P.S . Look at my old paper work i was 27 yrs old when I had the surgery I'm 59 now if anything it's got worse not to sugar coat anything take care.
Also some people maybe beneficial from taking LDN for pain management
How long would it take to be able to lift weights after tos surgery? I love bodybuilding and would be super depressed if it took a long time to be able to lift weights again.
can you please share about pain management?
I had my surgery 25 years ago same way you had yours same side left side I still have problems to this day with pain and numbness tingling in the arm going down to the pinky that will even twitch and kind of go numb have numbness on the forearm they said it was from cutting some of the nerves including the ulnar nerve I have had a lot of research that I've done so if you'd like to know some of my journey let me know be happy to let you know.
Are you doing any sort of physical therapy?
Just after the surgery mine is cronic Got remember they cut through the alner nerve and then do there best to repair it. Some people do fine and have or develop problems later with fingers and thumb palm cramping bad numbness tigling that's can be for life like mine.. hope you are fairing better than me
YOUR EXTREMELY BEAUTIFUL ♥️🥰😘
I'm really interested in the pain management classes you took. Any guidance how to find them?
I’m not sure, but I would look up Mayo Clinic’s Pain Management section…mine was a group class that was a few hours on an afternoon, but that may be a place to start!
After all you have been through would you recommend it?
As I have a separation at T1 and the first rib at the intercostal vertebra.
My hand is always cold, sore, along with a burning sensation.
Seven years of it…
In short, yes, I would. With the amount of limitation I had, any improvement was worth it. My healing process was slow, but I’ve had some breakthroughs in the last few months and have been doing amazing! I’m hoping to post a video soon about it 💕
DID YOU GET RADIATING PAIN DOWN YOUR ARM AFTER SURGERY - HOW LONG DID IT LAST IF YOU DID?
I had that prior to surgery, and I’d say that it started to dwindle away after surgery, over the next few weeks/months, but then I’d still have issues with pain down the road from there…
Where did you have your surgery, am in pain
I had my surgery exactly two years ago at the Mayo Clinic in Rochester
I am about to get a surgery date and i am kinda nervous and i am also in the military and love to run and lift weights and do sports so, i was kinda wondering if doing this surgery is worth it and if i will be able to do all that after i recover.
Hello there! IMO, I think the surgery is worth it because leaving the issue there could cause more damage. I haven’t been able to return to do weights, but a large percentage of people are completely back to normal after the recovery period from the surgery. I’m hopeful that you will mend quickly and not have a prolonged case like mine 😊
@@thoracicoutletsyndromether8930 thank you for the feedback!
How are you now
How did you shower after surgery? I'm finally going to Houston to discuss surgery options.
I pretty much sponge bathed in the shower. If you still have a JP drain in, they don’t want water to run over it in case it gets inside. After it’s out, it doesn’t really matter, but I was still very careful with the opening since it was tender. They may also recommend not raising your arm above a certain level, so that can present some challenges when bathing.
They have to fix both parts. They did the nerve blocks in the left pec and the scalene muscle and it seems I need both done. Did they have to do the same for you?
@@beautifuldarkness956 they didn’t do any nerve blocks for me during the surgery. They did the rib removal, and then they removed quite a bit of scar tissue from the scalene muscle. They DID do a short-acting lidocaine injection in my scalene to see if it was related to TOS, and boy, did I feel good during those 4 hours it lasted. I’m hoping it helps you 😊
@@thoracicoutletsyndromether8930 I'm allergic to lidocaine so they did a steroid nerve block. I see my surgeon Monday to discuss surgery, I get to fly this time 🙌
@@beautifuldarkness956 good luck with everything! 💕
Thanks! I didn't even realize it, but suddenly it hit me… I was actually letting it flow after the movies, my best guess is that when I go'ogled Beck Reznark's guide and read it, something changed inside me. Can’t quite explain it, it’s been months, I can’t believe I even had paruresis to begin with.
Have you been able to run
So I haven't tried to go jogging/running since then, so I can't tell you with certainty, but I have been able to do some cycling, and it doesn't hurt to grip the bike handles anymore :)
Who did your surgery?
I had my surgery at Mayo Clinic in Minnesota
@@thoracicoutletsyndromether8930 which surgeon?
Dr. Bernardo Mendez