Newly diagnosed tos syndrome.. scared..

Hello Crystal! I am so sorry that you are experiencing such pain and facing this TOS diagnosis too. Feeling anxious and scared is completely understandable and I can totally relate to these feelings. Given the condition and situation it is even considered "normal" to experience such intense feelings....believe me I know it's terrifying that at the least anything I experience related to TOS be at all considered normal. I don't want any of this to be considered or to become my normal or my life!

If you have been experiencing symptoms for only 2 weeks now and have already accurately received the diagnosis of TOS, this is the fastest diagnosis from onset of symptons I've heard of yet! Hopefully this means you are in the hands of experts that can not only identify TOS but also get you on the right path to treat it. Yes, it is treatable but just like TOS symptoms vary, methods and success of TOS treatment also varies greatly among us with TOS. Did your diagnosing Doctor not give you more information on treatment options? Do you have Neurogenic, Venous, and/or Arterial TOS? Any recommendations made for physical therapy or surgery? Any Referrals made?

I received my diagnosis of bilateral TOS just a few weeks ago on April 28th. It took me nearly 2.5 years and 29 health providers to get a diagnosis. However, I came across the condition soon after the onset of my symptoms while searching for answers I wasn't getting from my Doctors so I've studied and learned about TOS for much longer than I've actually been diagnosed with it. I have bilateral cervical ribs and venous/arterial TOS. I am scheduled for surgery on my left side in June and will schedule my right side when or while recovering from my first surgery.

The quality of my life has been impacted greatly since the onset of my symptoms. At this point, there is no getting the life I had back. There is only starting over. I am 37 and have 2 children. My children don't even remember when I didnt hurt all the time and when I did so much more with them because I could. Although I am married, my husband even admitted to my Doctor during the appointment I was diagnosed that he did not believe me at first and times thereafter and has not been supportive as he should. I have certainly experienced a lonliness like I never knew before or would wish upon nobody else.

Crystal, you are NOT alone and kudos to you for reaching out as soon as you have. I wish I had done so sooner. We can't take away each other's hurt and pain, but we can provide a kind of comfort to each other in ways others cannot. We all have our different stories and experience but we all seem to share the need to not feel so alone, the ability to understand one another in ways others who do not have TOS can't, and the desire to help each other through this. Please let me know if there is anything else I can share that would be helpful to you. I am praying for your healing!

You're not alone. It took me YEARS to figure out that I have 2 extra cervical ribs and TOS in my left arm. I'm going to post some of my dialogues from other blogs about this. My suggestion in the interim... try Gabapentin/neurontin for the nerve pain. Then IF that doesn't work (I couldn't handle the Gaba-hangover it gave me) then your insurance should allow Lyrica. I take 200 3x daily... A LIFE SAVER.

I had the surgery to resection (remove my left mutant rib). BEST Idea EVER! where are you located? I'm in Seattle.

Oh, I'm also 37. I'm already on 40mg anti depressants. I would freak out so bad I would be on the verge of passing out. Landed in the ER one time as a matter of fact. I would have NO feeling, or unfathomable pain.The physiatrist gave me an ECG to check for nerve conduction. The decrease of activity lead to my xrays which revealed my bilateral mutant ribs. From there, I moved to the vascular surgeon March 23rd to be exact. Physical therapy was pretty worthless because it IS, for me, a STRUCTURAL issue, so no matter how much I worked out... I kept getting set back again. Frustrating to say the least. I'll do it post surg. Also, as for sleep, I sleep like a total weirdo now. On my back like a stiff barbie doll. Don't put it past me to sleep on a flat hard floor if it's really bad. If your tired enough... and you will be.. you'll sleep. Zquil helps too.

So pain killers wont work on nerve pain. That's why you really need something like Gabapentin or Lyrica. I LOVE Lyrica. I can't take NSAIDS because I have a perferated ulcer. I also have Psoriatic Arthritis so I'm in chronic pain always. Anyway, if you can Celebrex is AMAZING for inflammation. Better than anything I ever tried. And thats ALOT!

Yeah it's rough...surgery is a cure not a treatment so that's good... find a good surgeon plenty of hacks out there I've had bilateral anterior and medial scalenectomy 1st rib resection and peck minor tendonotomies...good as new!!!! Stetch for now pull down on your 2nd rib with your finger tips while you stretch your scalene muscles and try sleeping in a recliner I tied my arms to my waist so I couldn't lift them above my head at one point and medicated myself to sleep😔 No fun?

Wow I'm glad they diagnosed you so quickly. Me not so quickly my trouble started around 30, now 44 on and off numbness in arms mostly right because cervical rib on that side was much bigger. I was diagnosed one year ago with cervical rib tos syndrome after one md actually knew what he was looking at on my xray's and mri. My surprise was that no one ever noticed the extra ribs which leads me to now get a second opinion on all xray's as things are always missed. As an example I did do the surgery Feb 2nd this year on right side with mine being a disaster. Now don't let that scare you I also have and autoimmune disorder, lupus which took a long time to diagnose too. But I did an xray for a follow up from surgery where they actually collapsed my lung on accident and the person who read it here actually put in the report lung fields clear and no bones abnormal. Well one I just had my first rib cut out and 2nd I have scaring from the collapsed lung, so I had the surgeons office look at it with an actual read this time. That just goes to show you not everyone knows what they are looking at. As of the pain you will get kinda use to will affect normal life but right combo and trial of medication will give you life. Family as mentioned before does not understand a lot so make them aware by printing out things of sending them links on symptoms ect so they try to understand. I did this at first but they still didn't get it until I did surgery and the medical staff actually explained to my wife what I was going though. Although I'm not a good example if you have read any of my stuff I have vented about it has helped me mentally to talk about it. I have had some major complications from surgery and going for more testing due to loosing the use of my arm after surgery. Which leads me to this. Therapy for a long period can reduce symptoms and make sure that the therapist is familiar with your condition. As I I found due to lack of knowledge on my medical staff at home when I got back from the hospital which is a few hours away that they actually did know what they were doing and could have actually done some harm. Next scan will tell, the pain and misunderstanding does cause depression as mentioned and there will be good days and bad days but I think since you got a doc that actually knew what he was looking at you might have a good chance of recovery due to no permanent damage has probably not occurred. Did you have a fall or accident right before, cervical ribs? Just wondering what caused your symptoms to come on suddenly. Good luck and remember it is what you make of it. Do what makes you happy and do not let your family get ya down. Let them read some our post might make them think a little.