Hi,
I'm new to the forum and wanted to introduce myself. My surgery for TOS is approaching and I can't wait to get it over with and begin recovery. Any tips pre & post op would be greatly appreciated...hopefully I'll be a quick healer because I have a ton of 'stuff' coming up later this Spring. For those of you that have had the surgery, how many days after surgery were you able to drive and perform simple tasks like carrying a brief case, cooking eggs, take a mile walk, ect?
My symptoms are on the right side, my hand my shoulder(near deltoid), and constant headaches. I also get annoying spasms near my right temple(head), could this be related? Hopefully the surgery will relieve everything. I will be sure to post my experiences with recovery - wish me luck.
Thanks!

Just want to wish you good luck with the surgery and hoping it will relieve your symptoms! I'm unable to offer any first hand, post-op advice since I haven't yet had the surgery (it's been offered a few times by Dr. Donahue at MGH for NTOS). I too have a constant TOS headache and face spasms that extend from the right jaw to the outside of my right eye, around the temple. Extremely annoying. Please keep us posted on your progress.

Hi,

I had the surgery two years ago when I was 37 (the younger and healthier you are the faster you recover) and I think I was walking to the park after 1 week and driving between 3 and 4 weeks post op. I had headaches and spasms just like you describe which disappeared immediately after surgery. I believe the headaches are occipital & trigeminal neuralgia and are cervicogenic in nature, brought on by the neck tension and forward head posture that comes along with TOS. I believe there is a good chance that you will be headache free if your cervical spine is still healthy. You may need PT and massage to lengthen shortened muscles and strengthen to correct muscle imbalances.

Unfortunately for me, I had existing cervical spine issues and had fusion surgery a year before. My TOS symptoms recurred 9 months post surgery and so did headaches, but with a slightly different presentation (excruciating neck pain). I had more surgery to clean up scar tissue on the brachial plexus (and investigate other potential issues). Long story short my TOS symptoms are resolved but my neck and headaches are still an issue. I can only wonder what if TOS had been identified sooner (before my neck became an issue)...would I have still needed the fusion? I started having TOS symptoms in 2007 but didn't start having neck pain until 2010, prior to learning about TOS.

Have you already tried various types of PT, chiropractic & bodywork before considering surgical interventions..?

I'm just asking because even with an skilled TOS doc, recovery isn't always 100%.
From your symptoms I'm guessing you have more NTOS (nerve) and not VTOS (vascular)?

Did something specific show up on xrays/MRI or other testing?
- like extra cervical rib, large bone/ligaments, other anomalies?

Was your TOS caused by an injury of some sort ( car accident /sports etc), repetitive/work related or some other?

A few questions for you and I will try to get to some of yours. How far from out of town are you traveling? Who will be with you for support? You said your problems are on the right side - are you right or left handed? What is your age? Any existing comorbidities (diabetes, high blood pressure, etc). Do you have neurogenic TOS? Extra rib?

I'm going on 1 week today after surgery. Keep in mind everyone's experience will be different. It was rough but not as rough as I expected. The staff were very knowledgeable about TOS and the care path after surgery. They will only put you on a certain floor where the staff is trained for TOS. I'm a RN on a busy surgery floor where I work, and was very impressed with the caliber of the nurses and other staff there. They really took good care of me.

The biggest thing to recovering from almost any surgery is walking. Walk, walk, walk - do a lot of it. I was very worn out the day of surgery and didn't ask to walk that day, but the day after, I got up as soon as the fellow rounded and said I could. I found that after them helping with the IV cords I could walk independently. The catheter made this uncomfortable, but they removed it the morning after surgery. I would set up a lot in the chair instead of lying in bed after my walks. The bed is not your friend - staying in it will cause you to lose strength and puts you at risk for blood clots. Walking and sitting up also open your muscles to help your lungs breath better and help to get your bowels moving quicker after surgery.

For me, I found I wasn't using my pain pump much, so I asked them to take it away. This also mean they could take away my IV fluids since I was drinking well. This happened day after surgery. Percocet and my pain ball kept me comfortable. That said, if you need your pain pump, use it. If your pain is not controlled well, you won't be able to recover as quickly.

A week out from surgery and I'm able to use my left arm a little bit. I am not allowed to lift more than 5 pounds. No restrictions on the right side and I'm doing most basic things for myself. I really have not needed my wife's help much in the past few days, other than with things I can't lift. She is 7 months pregnant so I am actually faster than her!

I'm told two weeks post-op before driving, but it will depend on my meds. The muscle relaxer makes me very drowsy. They will wake you up at all hours of the night in the hospital to continue your pain and muscle meds on a tight schedule. Do this at home too - find a schedule that works for you and wake yourself up to make sure you get the medications at the same intervals. For me this has been 12am and 6am when I wake myself up.

Buy button down shirts if you don't have them. Putting on regular shirts is very painful (tried that, don't recommend it).

Others have said it and I've found it's true that it is easier to sleep reclined than lying flat. So a hospital bed or a comfortable recliner would be advisable for sleeping at home.

Follow the doctor/physical therapists guidelines and DO NOT over do it. Let your body recover slowly so that your symptoms do not come back. Good luck!

Thanks for the kind replies. This week has been crazy, trying to ahead ahead with the business so I can take a few weeks off to recover.

My TOS symptoms could have started several years ago. I've had facial spasms (right side), headaches, and hand symptoms for years. For me things started getting serious when my right hand began tingling after playing guitar. I was recording an album last Fall and my hand symptoms just progressively got worse as numbness started as well. I thought it was Carpal Tunnel but noticed that I had a 'click' in my collar bone when doing shoulder rolls. When the shoulder was below the click point, the hand would begin to tingle. So reaching the hand toward to ground cause my hand to feel like an electronic zap was happening. I tried a couple weeks of PT and symptoms got much worse quickly. I tried Massage Therapy and acupuncture, but neither helped.
Headaches I've experienced are brutal. Hopefully those will clear up post op. Dr. Thompson diagnosed me with NTOS in Feb, but since then my hand has tuned dark red, and sometimes blue-ish if I overdo it at work, or try to play guitar. I did not have any imaging done for the diagnosis, Dr. Thompson could tell by his physical examination. My TOS could either stem from an old collar bone injury or over repetitive use. My guess is probably both. I recently turned 40 and I've always kind of 'played through the pain' throughout the years with various sports and activities - basketball, football, rock climbing, mountain biking, drums and guitar, ect...lot of wear and tear catching up now it seems. It was very tough realizing I had to give some of those things up.

Luckily I live in St. Louis, and I hear from other Wash U doctors (that are treating me for my knee and hand) that Dr. Thompson is "the expert" and I will receive the best care. That has helped ease the anxiety. I'm telling everyone who is worried around me, "It's no big deal, I'll be back to normal in no time", but I know there's more to it than that.

Thanks so much for all the advice. I will stay on top of the meds and take your advice on the shirts and sleeping position. I bought a Human Touch Perfect Chair a couple weeks ago. So far that has helped me tremendously. It has a position called zero gravity that supports the spine and shoulders.
I hope to write back in a little over a week from now that everything went perfectly and I am feeling great. I hope you keep getting better everyday intrepidreamer (please keep posting progress), and thanks everyone for the info and well-wishes! Wishing you all the best.

Sincerely,
Rich

Rich, you may call me Ryan Lucky you that you live in this area. I'm still staying in the hotel until I fly back tomorrow. I return April 2 for my followup. You are young and apparently otherwise healthy so you should do fine. Best of luck to you and if you have any questions feel free to ask.

I have one too. It can be a lifesaver post surgery!

Thanks Ryan. Wondering how you're doing? Better everyday I hope. We're you able to reduce your needs over the last couple days? Have your pre-surgery symptoms been alleviated at all yet? Thanks so much for the info, it's great to have some knowledge going in.

Overall I'd say I am doing well. Most of my pre-surgery symptoms are gone but I'm being cautiously optimistic. I'm still on the long-acting narcotics so that could be masking symptoms.