New member -First Rib Removal due to obstruction
 

I'm a 19 y.o female and was diagnosed with a 10cm long blood clot in my upper right arm, and multiple pulmonary embolisms in both lungs in October of last year.

After 6 months of Warfarin treatment, maintaing my INR between 2-3, I was told my clots have not dissolved the way they should have.

A CT scan showed that my first rib and clavicle obstruct the artery in my arm where the clot is, every time i put my arm at a 90 degree angle or higher.

My hematologist has discounted rib removal surgery because of the pain, risks, recovery time etc.

I wanted to know if anyone has had this surgery because of this problem (my specialist said she's never heard of anyone having the surgery done, to fix this problem)

Thanks!

Seek out Vascular surgeon specialists, especially if they are very experienced with TOS. Second opinions or more & probably more testing like a Doppler perhaps.

Many have had the surgery and vascular TOS cases usually has positive outcomes. ( With an expert surgeon:) )

There are some recent threads posted that have had good results.
the main TOS threads list-
http://neurotalk.psychcentral.com/forum24.html

TOS testing info-
http://neurotalk.psychcentral.com/post580952-11.html

our useful sticky thread full of information-
http://neurotalk.psychcentral.com/thread84-3.html

Wow, I rarely hear of people not getting the surgery once they know that the compression is causing bloodclots.

What does your hematologist recommend as your next course of action then?

You said "A CT scan showed that my first rib and clavicle obstruct the artery in my arm where the clot is..." What does your hematologist say about this?

I don't think hematologists study in depth about structural or compressive issues? Possibly more towards the chemical and diseases of the blood?:confused:

did a quick search...

[A medical specialist who treats diseases and disorders of the blood and blood-forming organs.

A physician specialized in disease of blood cells; most hematologists are also board certified in oncology Meat & potatoes diseases Anemia, leukemia, coagulopathies]
http://medical-dictionary.thefreedic...m/hematologist

Definitely seek out a vascular surgeon with TOS expertise. If you let us know your location we can offer some suggestions.

I live in Melbourne, Australia

Hematologist recommended staying on warfarin (blood thinner) for the rest of my life, as rib removal is quite invasive and takes a while to recover from, she's also set up an appt w/ another hematologist for a 2nd opinion

CT scan shows that every time I put my arm above my head - or higher than a 90 degree angle, an artery that runs in between my first rib and clavicle is completely blocked off as the ribs butt up against each other, stopping blood flow

Hope this helps!

Rib removal is not terribly invasive and recovery times (especially for young people) are reasonable. I have had rib resection surgery on both sides and my recovery is going even better than expected.

Maybe you should try and see this guy for another opinion:

This is great. Thanks!
I have a appt next Monday w/ another hematologist for a second opinion. The more I read about rib removal, the more I'm leaning towards it. The side effects and lifestyle changes that comes along with life-long warfarin in take is something I would prefer to avoid.

How long were you out of work for? From what I can see average recovery is about 6-8 weeks

It seems that my return to work range will be 8-12 weeks (I'm currently in week 6). However, I have neurogenic and vascular TOS and it takes a while longer for nerves to recovery. If you have strictly vascular TOS, 6-8 weeks sounds about right for bilateral surgeries.

Hi jlrob6, I must say, I'm a little surprised at your Hematologist's narrow focused response to your condition. A range of tests are used to discount what maybe wrong before final diagnosis, and reading through these forums, you will see nearly everyone has a different experience with it.

I saw on TV the other week that an AFL player has had a similar operation near his clavicle. The younger patients recover quicker, as nospam has mentioned but I'm afraid your Hematologist doesn't know enough to advise you.

I had my rib resection done five weeks ago, just after nospams first one, but the surgeon went in from the front because my issues were many, the simpler ones and less invasive are transaxillary, through the armpit and there are less nerves to disrupt.

The surgery is less common in Australia, but not unheard of. If you look online, an episode of RPA had a rib resection in 2010. This link can give you some easy to understand information as well. http://morphopedics.wikidot.com/thor...utlet-syndrome

I'm in Canberra and my surgeon is a Professor of Vascular Surgery at the ANU, so I'm in good hands. You would do yourself justice if you saw the appropriate specialist. Keep in touch! :D

Thanks Blutro, this is great info
I'm getting a 2nd opinion on Monday & will push to have the surgery, as I really don't want to be on blood thinners for the rest of my life.

I'm hoping my Heamo can recommend a vascular surgeon in Melbourne & get the surgery done later this year, to avoid missing too much uni.

Looking forward to Monday, hopefully get some solid answers!

- Jenn

Just make sure the vascular surgeon you select has performed a good number of these surgeries with a high success rate.

Hello from Toronto Canada! I have had a simliar situation as yours (minus the pulmonary embolisms): blood clot in right arm, comprised blood-flow with arm elevation etc. I have been seeing both a hematologist and a vascular surgeon over the last year (and been on warfarin). Both doctors have concluded that rib-resection / removal is the only option for me. Based on research it appears to be same recommendation for most people in our situation. Staying on warfarin for the rest of your life, especially at such a young age is not optimal by any means. And, if for some reason you ever had to stop warfarin treatment, you are guaranteed more clotting and each additional clot creates further and potentially catastropic damage. While I do not have my surgery date yet, I have been booked for my pre-surgery assessment on June 26. Not looking forward to the recovery, but am kind of glad to finally get some closure given it has been over a year now. I would strongly suggest you visit a vascular surgeon who is well versed and specializes in this condition.

Hi all,

No Surgery for me at the moment.

After meeting w/ my hematologist today, and this is the gist of what happened:

Doc is too uncertain about potential risks and long term side effects of bilateral rib resection (I'd have to get both removed). Does not like this option at all. He says that the possibility of something going wrong is quite high and will take my body a long time to recover - longer than a healthy patient because of my weaker lungs, heart, blood flow caused by the clots.

Right side of my heart in still enlarged, and clots in my lungs and arm have not gone away like they were suposed to. Which makes him think that there is another underlying factor that could be causing my trouble- not just obstruction between 1st rib & clavicle.

Going to get lots of tests done in the next week. Factor 5 and other potential genetic blood diseases, Echo heart test, VQ lung scan, & some more ultra sounds.


So staying of Warfarin for the next 12 months at least. Could potentially go off it and see how I go, and then if I got another clot, we would revisit surgery route.

Bit of a confusing day. I had fully prepared myself to move forward with surgery option and now we're back to more tests and more uncertainty.

Thats it for now

I'll try and keep you all posted as I find out more info.

- Jenn

Best of luck with all the testing, it's a tedious process but sounds like it is needed for your case. Other factors have to be checked out.

Thanks for keeping us up to date jlrob6. With the extra information you've provided, I can see there is a bit of a road ahead for you. Be mindful that your CT results need clarifying as they are taken at rest. To clarify the CT result, I would recommend you ask for some Venography and a Doppler ultrasound, the later identifies the type of blockage on the vein, I expect you are referring to the subclavian.

Let us know how you go. :D

Hi Jenn

I have only just seen your post. I am in Melbourne as well. haematologist's here tend to fob you off here unless you have cancer. Thats what mine did with me. I am on thinners for life after 2 clots. I am on my 2nd Vascular specialist after the first one was a big fail. I am looking at surgery also but still doing the TOS shuffle between my Neurosurgeon and Vascular. How have things been for you and have you had any success with dr's?

Hi All,
Well it's been about a year since I last posted on here and just stumbled upon it, as I am now researching rib resections.

After a year of tests, delays, 2nd, 3rd, 4th opinions, my specialists have all concluded the same thing you had 12 months ago! I need a bilateral first rib resection.

I am meeting with a vascular surgeon in the next coming weeks to discuss my path towards surgery.

It has been a frustrating and long year, with many specialists never seeing a case like mine before and not having the slightest idea how to tackle the problem.

I'll keep you all updated as I finally move forward to recovery!

-jlrob6

Thanks for coming back with an update and best of luck to you!

Drs in Melbourne
 

Hi Jenn

I am now on more referrals than I care to go to nor can afford in Melbourne. My previous Vascular's and Neuro are not advisable and I dont think they have TOS experience. Its very hard to find an actual specialist here. I am looking at The Alfred Hospital being the best place to have the surgery with a better vascular unit than all other hospitals in my 3 year search in Melbourne.

Here is who I have found which is an option if you have private insurance. This Dr actually has TOS experience and is also linked to a Neuro who looks great also

http://www.arteryandvein.com.au/thor...t_syndrome_tos

http://www.gregmalham.com.au/

If you want to go public get your GP to refer through The Alfred's Vascular Clinic http://www.alfredhealth.org.au/Asset...l_Vascular.pdf

My last Neuro and Vascular after 12 months have just been found to have missed c ribs and nerve issues on my brachial plexus they said were on the left but the MRI results say the right side. MR Terry Devine is Useless and getting long in the tooth and close to retirement. I dont think he really understands TOS. Dr Adrian Ling who was my 2nd Vascular is not experiences either so I would try the links above for the best option. We dont have an actual specialist unit in a major hospital like there is in the US so it takes a lot of research and Dr shuffles to find the right one. Feel free to PM me anytime.