My son is 1 week post rib resection for TOS
 

My name is Lynda and I am writing to learn more about how to help my son recover from his first rib resection surgery.

Blake is a very healthy 24 year old that was diagnosed with TOS on Aug 3rd after having a blood clot in his left arm and enumerable pulmonary emboli. He had surgery at Stanford Hospital on Aug 31st. The surgeon removed the left first rib and the scalene muscles and said it was a textbook surgery and all went very well. But the past week has been a roller coaster. He has been in constant pain. Originally the pain was in his back just behind his left shoulder blade. Now it is in his left shoulder and arm. He is on constant pain meds and muscle relaxers and even takes ativan from time to time to help him relax. Ice seems to help with the swelling too.

I honestly thought that he would begin improving by now but he is still just as bad as a week ago. He starts physical therapy today and doesn't have a followup with the surgeon until next week. I feel like he needs to be seen by the surgeon sooner. Am I just being a worried mum or is this constant pain something he will have to live with for a while.

Any advice would be greatly appreciated.
Cheers,
Lynda

Many swear by sleeping in a recliner or many many pillows to prop /support the areas.

Extreme discomfort is pretty normal for a week or 2, but a call to the dr asking about better pain relief for this time wouldn't hurt.

Pain makes you tense up and that is not a good thing during recovery, or ever really..
when a muscle/s is/are constantly tensed up blood flow is restricted - blood flow carries in the good stuff as well as carries out the bad stuff.
So you want to have the flow moving.

What does he rate his pain level at? 0 none -10 highest - dr will want to know that most likely. daily avg + highest /lowest
http://www.tipna.org/info/documents/...ePainScale.htm

Sending you good thought for your son recovery! I just meet with my surgeon last week (im pre surgery waiting on authorization) but same as Jo said... My Dr said the pain most likely will be worse :mad: for weeks after, as the nerves are swollen and need time to heal. Is he still in the hospital? Please keep us posted and let him know we are thinking good thoughts for him!
:hug:

Im sorry .... he is not in hospital.... I originaly thought it said Aug 30... sorry

I must need more coffee.... he is only 1 week post op.... Im on the retard side today and shall stop posting.

Hi Lynda I am a mom that my daughter had surgery back in 1997 from a 95 injury, She was 16 at the time of the injury.
I don't know what the worse surgery you every had but there is so much tramua from the poking, prodding, pulling. To remove the rib large mechanic size cutters are used. THey have to pull every nerve and identify it as to not cut them.

They do end up being truamatized, and flare. The blood clot was the vascular end of it, after the space was open with the rib gone, then the scalense muscle in the neck had to be seperated, and likely a bypass of the affected arties or veins around the scalense area.
I bet it feels like a butcher knife in the area above the wing...there is a nerve that runs along there that is a painful trigger. It is inflamed and the muscles around it try to make a splint to protect it. Right were the nerve inserts into that muscle. THose muscles are the Hanger if you picture one for the wings to sit in.
Some times ICE right on that spot, and some gentle pressure, or a tennis ball pressing in may help.

The surgery is like someone sticking there hand with a wrench in it into the neck and pulled, cut, covered and sewed up.
So a week is when you feel the worst really.

I also agree, I bought a used recliner for $50 for my daughter, (sanitize it for bedbugs now a days). Ice, we used frozen bags of peas, make sure to mark not to eat.
Pillows in the arm pits or small rolled towels.
Keep up on the medication, do not wait until the pain is there, take it on time! better then playing catch up. Make things in reach, oh, and many times a baby boppy for the waist is great support while in that recliner.

But realistically, it could take a month to calm down the nerves and body from the surgery, and 6 months to a year to feel what the results are.
I find it particulary odd how many blot clot cases are being diagnosed and treated that we meet on the forum.

Traditionally it is only about 5% of True TOS, not disputed TOS diagnosed which is about 95%. I wonder why the increase?
But over the years we have had many young people on here.
Welcome, and feel free to pick our brains or look for a hug.
di:grouphug:
OH, Toradol is a great anti inflamatory that is non narcotic so doc's do not argue the use. The shot is better...if your son is in the worst type of tooth ache pain almost in tears with the pain, a "shot" of toradol will help.
I am able to manage with my PCP providing my shots in huge flare ups. Better then pills.

Hi and welcome

I hope your son is recovering and his results are good.

You're getting great advice here.

I used 3" balloons for my armpits. Portable too :wink:

I pray he recovers Godspeed. My heart goes out to you and him.

Lynda: He is really early in his recovery. If you don't mind me asking, was it Merritt or Lee who performed the surgery? or someone else?

I hope he starts to feel better real soon.

Hello. I am writing because my daughter was diagonosed with thoracic outlet syndrome after a swollen right arm resulted from clots forming in her shoulder due to the compression on the subclavican vein. After dissolving the clots, (she has been on coumeden for 4 months) her vascular surgeon informed us that she needs to have the first rib removed. Since then, we have received conflicting advice on whether she really needs to have the surgery or not, and who is better qualified to do it - a vascualar or orthopedic surgeon. Needless to say we are both very confused. She lives in Atlanta and we don't know how to go about finding the best doctor there to do this procedure. Since most of you have probably done tons of research on this, any advice you can give would be greatly appreciated. Thanks.

Hello,
I'm very sorry to hear about your daughters current diagnoses. I also had TOS(paget-schroetter syndrome) clot removal surgery and 1st rib resection all within a 2 month period. I personally would recommend having the rib removal surgery but only by a Vascular Surgeon who is familiar with TOS and has performed a rib removal at least 20 times or so. Also keep in mind that some doctors are trained to go in directly above the Clavicle while others are trained to remove the rib from making the incision below the arm-pit( my doc went above the clavicle and it turned out fine). As far fetched as it might be Stanford has a great staff (Dr. Jason Lee) and would be ideal if you could make it out here.
Once the rib was removed I had some lymphatic fluid swelling in my shoulder which resulted in referred pain in my back but all in all I'm glad I had the surgery. It has really helped put my mind at ease knowing that I'm not going to cause another clot next time I reach up high or extend my arm out. Here is a verse that helped me .Deuteronomy 31:6

I wish you the best of luck and will keep you in my prayers.

Blake,
It's very encouraging to hear that you are glad that you had the surgery and I hope that you continue to feel better every day! Unfortunately, I don't think it will be possible for us to make it to Stanford. We will be asking many questions of her vascular surgeon on the 21st - most importantly - how many times has he performed this surgery. I agree with you on that!

The doctor intitally told my daughter that he needed "two or three weeks out of her life" to take care of this, and she thinks she will be back to work in that amount of time. But from all I've heard and read, this could be a two month recovery.

How long was it before you back on your feet and feeling normal?

Thanks for any insight or advice you can give!

Joan

Just checking in to see how you are doing.

Hi, my name is Michelle and I'm new to this forum. I see that it's been a few months since anyone had last written but I'm hoping someone can still help me out.

I was diagnosed with TOS in March of this year after having a DVT(blood clot) found in the shoulder area of my right arm. A thrombectomy was performed to remove the clot, but not all of it could be removed and the procedure resulted in me having a few small pulmonary emboli in my left lung. I'm only 20 years old and am otherwise am very healthy, fit and live a positive lifestyle. I've been on Coumadin for about a month and a half (since the thrombectomy and my hospital stay) and my surgeon said that in order to not remain on Coumadin for life, essentially, that a rib resection of my first rib on my right side (where the DVT had been) would be necessary.

I am supposed to be on Coumadin for around six months, mostly to ensure the pulmonary emboli would no longer be in my lung, but since I am a college student going into my last year, I am hoping to do the rub resection surgery in mid-August, which my surgeon said is fine. My vascular surgeon, who I like and trust so far, has been performing rib resections for over twenty years and said he averages two or three a year. Is this reliable enough experience? I got a second opinion at a nearby hospital and all recommendations were the same. However, both hospitals are on the small side and I am wondering if I should get a third opinion form a more major medical center? I live in NH and the closest major medical center for me is Mass General in Boston (about an hour and a half away). My parents called and were told I couldn't be seen there until June at the earliest, which is kind of discouraging.

I guess my other main question is: Is it realistic for me to have the rib resection performed in mid-August and actually be recovered enough to ease into my school year? My classes begin the first week of September but I know I could miss that first week. This would leave three or more weeks for me to recover. My surgeon said two weeks would be time enough, but I know everyone is different. I know my health is more important than my schooling currently, but I am just trying to get the gist of what others who have experienced this may think.

Thank you to anyone who has read this and for any feedback!! :)

Michelle,
I had the same problem - blood clot and pulmonary emboli in left shoulder followed by coumadin for 6 months-have just had first rib resection by Dr.Dean Donahue at MGH. I higly recommend that you get a consult with him before choosing a surgeon. I am sooo glad I did. I live in DC and consulted with 4 different surgeons including the big names - Dr. Donahue was hands down the best choice for me and I am so happy I went with him even though it meant going to Boston. I am 7 weeks post op and doing great. Call Dr. D if you can for at least a consult before you make up your mind - his expertise in venous TOS and amazing bedside manner made my surgery a success.

To Moxie -

Thank you so much for the quick reply. That's GREAT to know about Dr. Donahue at Mass General. I'll see soon if I can set up a consultation with him. Did you happen to ask him how regularly he performs rib resections? I'm sure this is something I could inquire about if I consult with him, which I'm hoping to. If you don't mind sharing, how long were you in the hospital after the procedure? Did you have any complications? It's nice to hear you're doing well!

Add another recommendation for Dr. Donahue. I have bilateral TOS and recently had the 1st rib resection on my right side. I'll go in again this summer for the left side and I'm actually not dreading it. I was hesitant about the surgery at first but know now it was absolutely the only decision I really could have made.

As for your timetable, I'd encourage you to let the doctor set it. With my second in late July, I'm planning on being able to go back and teach the first week in September. After my 1st surgery in February, I missed about 5 weeks of teaching school. I felt like I was ready to go in almost two weeks out but as Dr. Donahue will tell you, he's very conservative and encourages you to "pay your dues now" as it will aid your long term recovery.

Whether or not you get the surgery, I cannot recommend Dr. Donahue enough. He's fantastic.

Hi, I just had rib resection done by Dr. Farid Garahgazloo using robotics, at Reston Hospital, curious if you interviewed him and did Dr. Donahue use the robotic procedure. Did you have to have angioplasty/stent for the vein?

That is interesting- I located a link with some info/video-
http://www.gwhospital.com/Hospital-S...---Gharagozloo

My Son...8 month post 1 1/2 rib removal-TOS
 

Michelle

I too live in NH and going to see Dr D was the best thing we did for our son. The week before Christmas 2010 my 17 year old son's right arm went "dead". Pain, numbness, tingling with no history. He has thrown shop putt, played foot ball without ever having injured it or pain, so this scared me senseless. At the age of 8 he was being tested for cancer when in this process they found he was born with two extra "Adams" ribs. Nothing to worry about they told us and up to this point they had never been an issue.
So on Dec 20 we were off to the ER at Mass General. There we saw 5 surgeons...the last one being an associate of Dr D. We told them about the extra ribs and they x-rayed him again. There it was...the extra rib on the right side had not only grown, but it had twisted in its growth and into the first true rib. His nerve and arterial bundles had been playing ring around the rosy within this rib. Needless to say he was put on a months worth of meds to calm everything down in preparation for the removal of at least the extra rib. His surgery was scheduled for the last week of January 2011. We were told that he would be in surgery at least 4 hours, possible more if they had to remove part of the first rib. 5 1/2 hour later he was out. Dr D did have to remove 1/2 of the first rib due to the damage the Adam's rib had caused. 1 week post surgery he had some numbness in his heel, one finger and a palms worth over the surgical area. No muscles were cut and blood flow is 100%. Dr D told us it would be a full year recovery for the bones to heal but activities could be resumed a little bit at a time. At this point, I don't think there is anything that he does differently then he did a year ago. He thinks twice before doing anything heavy or foolish. He just completed his Eagle Project which consisted of moving 5 years of stone with wheel barrels and then raking it out as well. He was a bit sore but who wouldn't be. I know this posting is past the time you were looking at having the surgery, but there is hope out there for TOS and Dr Donahue is one of the great ones. Please feel free to PM me with any other questions. :hug:

bilateral TOS
 

I had a blood clot in my right arm a few years ago and was diagnosed with TOS...I have been procrastinating on getting the rib resection for some time now. I finally decided that I needed to get it over with and had a scheduled consulation, a few weeks ago though I noticed slighy color changes in my left hand a slight swelling, I went in for an ultrasound and they thought they found a clot, they then did an angiogram and found taht there was no clot but there was compression and diagnosed me with bilateral TOS. The vein on the left has been compressed so much and has scar tissue so they are going to do the rib resection and a vein patch. My doctor told me that the recovery would be about 2 weeks and I'd be in the hospital for 2 days. Hoping all goes well, he will then do the rib resection on the right side. I was wondering how your recovery was and the process of it, pain, moveability, etc. Im petrified but I dont have a choice, any information you can give me would be greatly appreciated

Hello googs,
Vascular TOS surgeries usually have better results that nerve related.
Recovery might take longer than what the dr suggested, so keep that in mind , maybe it will and maybe it won't.
Plan for longer just in case, and don't be upset if it does take longer.
A good solid recovery is what it important.

I'm hoping you have an experienced surgeon, that has done quite a few of these, always best to keep the odds in your favor.

use the forum search tool to find more posts & threads on surgery for TOS.
http://neurotalk.psychcentral.com/search.php

Also skimming the thread title list is a good way to find surgery info.

Just had 1st rib resection
 

Hey there,

I had a large thrombosis in the subclavian vein which was discovered 12/1/11. Four days later, I had the clot liced and then the first rib resectioned the next day. Healing very well. Feel phsyically very much back to normal 2.5 months later, but my energy level is still very much up and down -- as is my mood, though it's more down than up, honestly. I'm a 45-year-old man -- a pretty athletic one, but still no teenager -- and this thing just knocked me for a loop emotionally. Just wondering how other people have felt after this.

James

Takes a bit of time
 

I am exactly 1 month post op rib resection/ brachial plexus decompression. I had ice on me constantly for the 1st 3 weeks on my chest and below my shoulder blade. For me, I started feeling better at about 21 days, and have now gone to ibuprofen and heat or ice during the day. My doctor saw me 4 weeks post op- I think that is pretty common for the dr to wait a few weeks for the post op, but I was encouraged to call the office if I had concerns about anything.
My pain is different now that the nerves are beginning to wake up in my neck and under the right clavicle. My neurosurgeon told me the pain comes in stages, post surgery because the nerves wake up at different times. I thought I was going to die the first 2 weeks but now I am able to go out for a few hours.
Hope your son recovers well- I am told that it usually takes 12 weeks for a person to finally get back to their old self- and that is if the surgery went well!

Getting There
 

Hi James,

Wanted to comment that I am a 40yr old female that had rib resection done on 10/7/11 and spent 2 days in hospital from surgery. I understand the low levels of energy and some depression. I have experienced it myself as I have a 1 1/2 yr old I so desperately want to enjoy and has been hard through out recovery. I went back to work after surgery in a week however, I have a desk job so was able to take it easy. I am still experiencing some muscle pain and tenderness at this stage but it is getting better and I am trying real hard to be patient with the process as I tend to think this surgery was "no big deal" and the reality is that it really was. I am able to control the more painful days with tylenol and those days are rare at this point. I am about to have knee surgery next and will be on crutches for 8 weeks and am hopefully that my upper body can handle the weight bearing after rib resection. My Vascular doctor is telling me that it is ok though. I am doing a good job of repeating my new motto: THIS TOO WILL PASS throughout each stage of the process of recovery. I believe everything you are experiencing is a normal part of the rocovery process and also think it is realistic to look at a good 12 weeks before things are felling more "normal". If you have any other questions or thoughts I would be happy to share my experience so far with you. Hang in there.