Fresh postop rib resection- love to hear anyone's experience or recovery advice
 

About 5 days post of of transaxillary rib resection on my right side for my crippling NTOS.
Surgery by Dr Reifsnyder at Johns Hopkins.

Spewing my story and looking for insight from other people who have had this surgery or even know a lot about it as well..

It's hard to tell how much immediate relief I have from the surgery thus far.
They did let me keep my rib, which they said was unusually wide. It looks pretty blade like to me too. Yikes!
There's still a lot of swelling and pain. A lot of the same nerve pain and lightening in the back of my neck, scapula, down my arm and into my hands. It Does immediately feel like a tight rope has been cut in my neck and it's no longer trying to crank my head down into my chest.. So I've got that going for me.

Anyone got any tips on how to manage the first few weeks before my post op appt and pt starts?
I don't want to risk losing ground on nerve recovery by not being proactive. Or retrain my body to do something that could be damaging.

My condition had deteriorated so much that my activity was already pretty limited to mostly staying in bed, family helping me cut my meals, dress, and drive Soong before surgery it was hard to take the aftercare instruction of "take it easy" seriously..

So turning to the people who actually Know things about TOS..
Any ideas and experience:
-Good arm positions? For sleep? Eating? Sitting?
-Good passive exercise? Scapula pulls? Neck stretchs?
-Any stretches? (I still feel something weird pulling back and forth behind my collar bone during muscle cramps and movement)
-I'm getting mixed instructions about whether or not I should wear a sling depending on what nurse I talked to while I was inpatient recovery. Did anyone have good luck with a sling? Or bad luck?
-Should I be encouraging more range of motion?
-Ice? Where did it work for you?
-pillows? I still can't seem to figure this arrangement out since leaving the hospital.
- any light low impact work outs work for you after surgery?( I had to stop jogging before, it pulled on my arm and neck nerves and wrecked me. )

Any "you would never think of it, but absolutely DO NOT try to do X!" Words of warning?

Thanks

Post op -
Don't make any fast grabs for anything
avoid trips and falls , rough car rides

sling only sometimes if needed. not 24/7 as you might get frozen shoulder..

Some do mild & gentle slow range of motion - perhaps lean over and let arm dangle and slowly let circle.

I'd look into diaphragmatic breathing to reduce nerve irritation and relax the neck without flaring you up.

After four surgery for TOS, I've done the following.

The first 10 days or so it will be very, very painful. So, don't do too much.

I would only wear a sling when needed, you might end up with frozen shoulder like I did. Especially if you wear it all the time.

Don't worry about any exercises, you should ask your doctor at your next appointment. One of my doctors told me to swing my arm back n forth for 30 minutes. You can do this as you are able to walk around the house.

Grab a bunch of pillows. I would stand one up against the bed board, and stack the any other ones. I didnt get much sleep due to the pain. But as time passes, (months) the pain will get better. If you have one, try sleeping on a recliner.

Try using ice packs for swelling and heating pad for pain. TRUST ME, these two items will become your best friend.

Be patient, relax, and don't overdo it. I pray your recovery goes well. If I can answer anymore questions, please let me know. I've been dealing with TOS for 22yrs. GOD bless!!!

Walk....I can always feel better the next day if I go for a walk. Take it nice and slow.

Thanks for the input guys.

This surgeon told me Not to use a sling.
That's fine by me, I just got out of 4 months of having to wear one all the time.

20YrsTOS- was your after surgery pain mostly like.. surgical pain? Wound pain, soreness, that kinda stuff? Or was it like a demon monster version of your nerve symptoms too?
My wound pain seemed to be decreasing quickly, but there's new weird nerve stuff surfacing. The nerve stuff was less the first few days and it was just PAIN pain.. so it was kind of hard to remind myself to keep at my usual slow pace because.. Pffft just pain is nothing. Just Pain is something I can work with.
Now with the nerves + the surgical pain it feels almost like surgery never happened, and I feel about like I did the week before surgery.
With your 4 surgeries, did this kind of stuff surface for you?
Was it an indication the surgery was ineffective?


I wound up back in ER last night due to sudden onset pain so bad it was making me vomit, and a stabbing head pain, shortness of breath.
I was laying in bed and let my head list to the left, away from the surgical side. the shooting sudden pain was so bad I got the sweats.. and the barfs.. And the crawling sensation in my neck was terrible. I kept having diaphragm spasms that felt like half of a hiccup and Could Not draw in air. I kept getting really lost and confused in my own room trying to get my pants to go to the hospital..
Surgeon's PA wanted me to make sure it wasn't a blood clot or I didn't re-injure my nerves or anything...

ER team had a different idea of the situation, mostly that I am probably just sore from surgery and wasting their time.
One of the resident Dr's that was part of my surgery came in and told me I was just complaining about a previous nerve issue that had nothing to do with the surgery. (Forget that I had the surgery to correct the nerve issue, apparently irrelevant).

When I tried to get more details motions restrictions, or body positions form them it was more of the same "Just General limited motion". One PA got so angry she left the room after saying that 4 times. She also told me that "extreme head movements" may just be something I can't do any more.. Such as Looking Left.

The trouble is my whole life has been "General limited motion" in increasing levels. But holding still also hurts. So does laying down, or sitting up.
So they sent me home and told me not to do anything crazy with my arms, they didn't know why I hurt, didn't know what was up with my nerves, and didn't know who in all of Hopkins I could possibly talk to about it.

It's not like I'm having people drive me to the ER because I get some symptoms after I do too much mountain biking! I just want to be able to be an adult again, to dress myself, to be able to hold up my own head without feeling like I've been hit by a truck.

I've gone to the hospital in almost that exact state on more than one occasion. When I hurt so much and am so confused from the meds that I don't know what to do to take care of myself, and it is scary.

I finally was given a rx for torodal from my neurologist to keep at home because that was generally all that the hospital did for me anyway. I just can't take it very often because it is extremely bad for the stomach, but I'm not sure how many hosptial trips this med has saved me from, lol.

It's better to go to the hospital and have it turn out that it is not an emergency than not go and find out it was.... Hang in there!!!

Thats terrible, I hope you feel better soon - as Eight said, hang in there.

BTW:
ER team had a different idea of the situation, mostly that I am probably just sore from surgery and wasting their time.
One of the resident Dr's that was part of my surgery came in and told me I was just complaining about a previous nerve issue that had nothing to do with the surgery. (Forget that I had the surgery to correct the nerve issue, apparently irrelevant). When I tried to get more details motions restrictions, or body positions form them it was more of the same "Just General limited motion". One PA got so angry she left the room after saying that 4 times. She also told me that "extreme head movements" may just be something I can't do any more.. Such as Looking Left.

Are these people even human or do they even have basic training in empathy?
Somebody is in pain and they can't even respond with kindness. Ridiculous.

Snapple, sorry to hear about the things that went on in the ER. Unfortunately, the majority of these doctors do not know about TOS, and they don't care.
Regarding my pain, it's all the above. The pain came from the incision and nerves. My nerves were burning and I had electrical shocks. Since I've had this for 22 yrs or so, my tolerance for pain is easy. So I only take Tylenol for pain.
As I stated in my previous message, you will need to take it easy. Trust me, TOS has taken 22yrs of my life, so I know how you are feeling. I was an athlete, exercise a lot, and love to have fun. So I know how you feel wanting to be an adult again. I had my fifth surgery three months ago, and I'm MUCH better. I'm back exercising and shooting ball again. But I'm not trying to rush anything. Doing light weights, but was told nothing heavy. No push-ups, bench pressing etc. After this fifth surgery, my nerves have been burning, electrical shocks, etc. I was told this is part of the healing, because nerves takes a long time to recovery. But as I stated before and just like my previous surgeries, I couldn't sleep, look left, couldn't drive, loss strength, etc. But now I have all of my strength, my neck is getting better, and I'm able to do more. I still have some ways to go, but I'm much better. Still have some pain, swelling on occasion, and nerve pain. But all of this is part of my recovery. If you want to know more about who, where, and what surgery I had, I can send u an IM.

Take care of yourself, and try to allow your wounds to heal.

Hey snapple, hope you are doing okay.

I live!!
Or at least my body still shambles across the earth.
The surgical pain has mostly resolved, unfortunately after that fateful ER visit, pretty much All of the nerve issues returned.
So all in all I guess I'm healing up well. It's like I Never had surgery at all. :mad:

I still don't necessarily think it was a Bad Idea. Just that it hasn't resolved my issue.
It made more room for my brachial plexus nerves, removed the crazy extra wide, blade like rib that was mushing them, and cut the extra short, steel cables that was my anterior scalene.

The ER visit, and cray as that was, turned up with something interesting too. The CT scan to make sure the sudden pain wasn't from a post surgical blood clot luckily didn't find any blood clots, but it did find a calcified ligament in my neck. The ER staff poo pooed it, but when I got the results it said I had something called Eagle Syndrome.

I'd never heard or it! Apparently it's elongated styloid processes, or calcification of the stylohyoid ligament and muscle. It's asymptomatic in most people, but in some people it causes a lot of crazy problems and can irritate the arteries and even cranial nerves. It's notorious for causing issues like gagging, sudden pain when turning your head (!!!), migraines, brain fog, etc.
It can also wreak havoc on the Spinal Accessory Nerve, with innervates the Trapezius (Scapula, shoulder elevation, arm abduction), and the Sternocleidomastoid (head tilt and turning, straightening neck)! WHAAAT!

It's apparently also very unusual, and unfortunately the Radiologist seems to be the one who was most familiar with it. I don't just have an elongated spike, but the whole stylohyoid muscle has calcified into a spike on my right side.
The gagging etc may be separate from my TOS issues, or it may be part of why I can't heal. I'm trying to track down someone who is familiar enough with it to help me. If the TOS fight has been any indication tho.. this could take some time..

Just something to look in to, people with failed surgeries or mysterious symptoms! Maybe there's a spike in your neck.

I'm also building up an impressive collection of scholarly articles on how Eagle's syndrome produces a lot of TOS like symptoms, arm and shoulder pain/weakness if anyone is interested!

Jzp119- Positivity, bro.

Akash- They are actually likely 700 centipedes wearing a lab coat and scrubs as a disguise, I'm beginning to suspect.

Eight- Torodal was the ONLY thing that calmed the pain in the ER and when I woke up from surgery! I didn't know you could get an Rx for it at home! I tried to get it, but they gave me more oxy's instead.
They are basically Ipecac Pills for me.
Hope you're starting to feel better and glad you have Some relief

You can add a post about Eagle Syndrome & any info links in our useful sticky thread, it might be helpful for future members.

Do you think you had that all along , or did it come about after the surgery?
I'm surprised the TOS surgeon didn't find it during testing :confused:.

Good thinking!

Docs say my calcification is post traumatic, likely from a spill I took a few months after initially injuring my shoulder. I bashed my face up pretty good because I couldn't use my arm to ace myself.
Some people have it all along and only get symptoms after trauma, getting their tonsils out, or some kind of disruption or degeneration that changes how they use their neck (like cervical injury, kyphosis, etc)
I didn't have any of the super weird symptoms at the start of the TOS issues, it was "normal" (as normal as TOS gets) nerve path and compression symptoms. About 1.5 years in to this is when the eagle style symptoms started, likely as the calcification grew.

darn it. i think even i need to get it checked out. however, from what little i have read of it, it seems to be very prominent? radiologists shouldn't miss it?

On my left side, I do have sensation of hypersalivation, burning when swallowing (not mentioned), facial sensations on turning, and tinnitus.

These are also common to cervical instability..

http://radiopaedia.org/articles/eagle-syndrome
Cranial nerve impingement

Hi Snapple, did you have a foreign body sensation in the throat or ear pain or any of the other symptoms in specific?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3191668/


Tinnitus = ear ringing.
Otalgia = ear pain.
Dysphagia = discomfort in swallowing.
https://en.wikipedia.org/wiki/Dysphagia
Carotidynia is a syndrome characterized by unilateral (one-sided) tenderness of the carotid artery, near the bifurcation. It was first described in 1927 by Temple Fay.

Akash- It's worth a shot, right? Worst that can happen is you have to keep looking for some way to get relief. You're already doing that.
You know what it's like to think you've found a way out only to come to a dead end, so keep your options open!
I'm chasing this tail in addition to my TOS arm fight because Who knows?!
It may be separate, but the head and neck issues are Just as disabling as the nerve problems. Pain is one thing, but dead arm pain + constant gagging + feeling like I'm having a stroke is Insane! If I can ditch one I can fight the other better.

When my ER follow up resulted in me waiting for the doctor to do a Google search, I got scared and tracked down some people with experience. This board is great for Q&A about Eagles from patients who are very experienced and knowledgable. The mod is a library of medical texts.
http://www.livingwitheagle.org/


From what I'm now learning, who detects ES and who considers it pathological rather than a natural variant can a gamble. Dentists, ENT, vascular drs, neck specialists have all been cited as The diagnostic.
Some docs are also not down with the ES. Much like the TOS. Even among the medical professional believers there is dissent as to how long is an elongated styloid and the extent symptoms can manifest. Also, TOS, there are vascular and neurological symptoms, separate or in some combination, which certain docs understand and others consider hysteria.
How many TOS docs have you read about on here who tell patients things like "You can't have TOS because your hand is too warm"?

Out of all my crazy docs, one thing I did eventually have was a Brilliant radiologist (not the one who found the bone, that was a student radiologist)
However, when going over detailed scans they are looking in a very narrow area. I was looking at a previous MRI, truing to find something my PT mentioned, when I found you can See my calcified stylohyoid muscle Clearly in the scout image series. The study itself didn't extend far enough into my neck to capture it in detail. This didn't turn up in the report. The radiologist was cued to check for other issues, or was unfamiliar with this Atypical issue, but probably more so that during a cervical MRI the radiologist is really scrutinizing the Spine and looking for pinches, bulges, or tumors. It's easy to not see a tiny bone out of place on the Macro scale when you're looking Micro.

Cervical instability is the frequent culprit for cranial nerve issues. It makes more sense. The neck is easily maligned, easily injured, and the root of the foul tree that is nerve problems. Positional variations can even drastically mess with the nerve space between vertebrae, as well as lifestyle and aging.
Neck/head/upper body injury followed by persistent nerve issues? It's usually the cervical spine.
"When you hear hoof beats, look for horses not zebras."
I had my neck checked inside, outside and upside down tho. Years of pt, life changes, special braces, stretching, arch support, exercises, acupuncture, etc.. Everything in my spine looks great. No bulges, no compression, no degeneration. Which is fantastic.. But also No Help.
Due to the structure of the muscles and placement of the styloid process, the symptoms can be very similar. This picture of someone's Insanely elongated styloids illustrates it well. It basically cups or butts up to the spine in certain head positions.
http://www.scielo.br/img/revistas/rb...a04enfig02.jpg

Finally..
I had and have (in increasing proportions) all of these, but from what I can tell it's in an odd way. I don't know tho.. For example "Trouble swallowing" for ES about as specific as "shoulder pain" for TOS. That can mean SO many things!! It's very subjective and I could only identify it as Pain.
Additionally, it's unclear if my Styloid process is elongated as of yet. My calcification comes from the Hyoid in my neck and tapers up toward my styloid, and may be a jointed spike or connect. So I'm pinching more so from the underside, or a solid bar across the nerves, and those with elongated styloids are pinching from the top.

I'm going to go in to detail to see if any of this helps put your puzzle together, so please forgive the long list of complaints:
Some of the first most noticeable things (other than and atypical of TOS, brachial plexus) were the weird tongue cramps, severe tongue burning, and inability to swallow foods if my neck and shoulders felt tight. I have a lot of trouble with dry food or bread. There is what I suppose could be described as a foreign body sensation, but I interpreted it as More weird cramping in the back right of my throat, along with a tight numbness around my jaw joint. (I tried to treat this as dental adjustment, acid reflux, ustomach ulcer, or stress clenching for years with it only getting worse)
Then the right side of my face started to feel slow and thick.
The stabbing headaches, tinnitus, ear pain, blurred vision, severe disorientation started along with a Very tender and reactive muscle lump under my right ear. Scalene massages made me worse.
This also started around the same time that head movements or lifting my arm (which cramps my neck) would cause sudden gagging. Like I had a hairball. Leaning over, looking up, moving my head and arms floors me with gagging.
As that became worse, I developed right sided facial spasms, electric pain, numbness and burning. Think Popeye face. My right side neck swells and even touching it lightly sets off all my TOS arm and shoulder symptoms and made me dizzy and unable to form a clear thought.
I can now no longer wear heavy coats, necklaces , or clothing with collars, and more recently anything that's tight near my neck like a bra. (It's cold here!)
And ya know.. T-Rex arm, cold dead hand, burning nerves down my arm etc.

Still out of all of this it made sense that it was an extension of the pain and cramping in my neck and shoulder. Just weird nerve stuff. How else could I describe it? Also, bringing up the gagging or how scary the cognitive symptoms are tends to change the Dr exam from "TOS, shoulder injury" to "psychological evaluation", so I backed off.

Find out! Why not? Maybe this can end.
Step 1 seems to be an xray or CT scan with contrast and an otolaryngologist or radiologist who has heard of it.

I think I have a disc bulge with a significant protrusion at C6-C7, more so on the left side, thanks to either the muscle or ligament structure having a failure, which is causing all my nerve symptoms, and left upper back spasm. Wry neck and TOS on the right is a result, with left Upper Trap in constant spasm.

My problem is the only solution is ACDF (anterior cervical fusion) or disc replacement. Former more likely to be recommended.

In both, the longus colli muscle (aka deep neck flexors which are essential to maintain neck lordosis) are dissected and taken "off" the spinal segments to reach them. Great stuff. :(

So this would mean overactive scalenes and SCM which would mean trading nerve root irritation fo TOS and cervicogenic headaches. Isn't medicine wonderful??:rolleyes::confused: