[parbie]

Hello all,


I'm new to the forum. Been reading for the past few days. I am copy pasting my story below from another thread. Trying to find more info on anyone with neurogenic TOS (and/or having cervical ribs which I know is more uncommon) who has gone or is going to soon be undergoing surgery. What approach was used? And if you didn't have the ribs removed and only a scalenectomy, why did you choose that route?

My Story:

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for a year. From the research I have done, the best way to ensure that you don't have recurrence of TOS is to have the cervical and first rib resection along with scalenectomy and brachial plexus neurolysis to get rid of the scar tissue in the plexus and it should be done with the supraclavicular approach. My symptoms have been right sided until recently, I am now also having pain in my left side but not nearly as bad as my right. I have done PT, been on every medication you can think of, several trigger point injections, epidural injection, a nerve block and ablation of the medial branch nerves and have seen 12 doctors over the course of the year since I had an injury from weight lifting. Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until a week ago (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan. My next step is getting a scalene block to confirm my diagnosis, but I already know from my history and symptoms and physical exams that I have neurogenic TOS and am done with conservative treatment. I am also considering getting the NeoVista MRI to double confirm my diagnosis. Has anyone had this done/think it is necessary? Also, I am in New York and have only been able to find one thoracic surgeon specializing in TOS who I am definitely planning on seeing after my scalene block. But can anyone tell me if it makes sense to see a vascular surgeon since I have neurogenic TOS? Or only a thoracic or neurosurgeon? In that case, I am stuck with this one doctor, because the rest in NY are vascular. I am also willing to travel to SF and possibly LA or TX since there is a limited number of experienced thoracic surgeons in general from what I've found so far. Any input would be appreciated.

[Jomar]

Originally Posted by parbie

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for a year.
From the research I have done, the best way to ensure that you don't have recurrence of TOS is to have the cervical and first rib resection along with scalenectomy and brachial plexus neurolysis to get rid of the scar tissue in the plexus and it should be done with the supraclavicular approach.

My symptoms have been right sided until recently, I am now also having pain in my left side but not nearly as bad as my right. I have done PT, been on every medication you can think of, several trigger point injections, epidural injection, a nerve block and ablation of the medial branch nerves and have seen 12 doctors over the course of the year since I had an injury from weight lifting.
Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until a week ago (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan.
My next step is getting a scalene block to confirm my diagnosis, but I already know from my history and symptoms and physical exams that I have neurogenic TOS and am done with conservative treatment. I am also considering getting the NeoVista MRI to double confirm my diagnosis. Has anyone had this done/think it is necessary?
Also, I am in New York and have only been able to find one thoracic surgeon specializing in TOS who I am definitely planning on seeing after my scalene block.
But can anyone tell me if it makes sense to see a vascular surgeon since I have neurogenic TOS? Or only a thoracic or neurosurgeon? In that case, I am stuck with this one doctor, because the rest in NY are vascular.
I am also willing to travel to SF and possibly LA or TX since there is a limited number of experienced thoracic surgeons in general from what I've found so far. Any input would be appreciated.

Hello & welcome parbie,

I don't know if such drastic surgical measures are always indicated, usually if the extra cervie ribs are present and removed, you may, or may not, need all those added procedures. That's why the various testing and multiple expert opinions are needed. And the skill & expertise of the surgeon when he gets eyes on, sometimes there are little surprises that just don't show up on any of the tests or imaging.

We have had a number of weightlifters with TOS joining this past year..

It is amazing when extra c ribs are getting missed with MRIs, but I guess if the order says to check c spine vertebrae for issues, or how ever the order is written, nobody looks any further...

NeoVista MRI - Your extra c ribs are already found now, so I don't know if this extra step is really necessary. It may show other issues that need to be addressed, but I'm not that familiar with that MRI, so maybe others that looked into it will have more input on it.

I'll leave the thoracic vs vascular surgeon topic to those that have gone down that path.

[jkl626]

Originally Posted by parbie

Hello all,


I'm new to the forum. Been reading for the past few days. I am copy pasting my story below from another thread. Trying to find more info on anyone with neurogenic TOS (and/or having cervical ribs which I know is more uncommon) who has gone or is going to soon be undergoing surgery. What approach was used? And if you didn't have the ribs removed and only a scalenectomy, why did you choose that route?

My Story:

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for a year. From the research I have done, the best way to ensure that you don't have recurrence of TOS is to have the cervical and first rib resection along with scalenectomy and brachial plexus neurolysis to get rid of the scar tissue in the plexus and it should be done with the supraclavicular approach. My symptoms have been right sided until recently, I am now also having pain in my left side but not nearly as bad as my right. I have done PT, been on every medication you can think of, several trigger point injections, epidural injection, a nerve block and ablation of the medial branch nerves and have seen 12 doctors over the course of the year since I had an injury from weight lifting. Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until a week ago (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan. My next step is getting a scalene block to confirm my diagnosis, but I already know from my history and symptoms and physical exams that I have neurogenic TOS and am done with conservative treatment. I am also considering getting the NeoVista MRI to double confirm my diagnosis. Has anyone had this done/think it is necessary? Also, I am in New York and have only been able to find one thoracic surgeon specializing in TOS who I am definitely planning on seeing after my scalene block. But can anyone tell me if it makes sense to see a vascular surgeon since I have neurogenic TOS? Or only a thoracic or neurosurgeon? In that case, I am stuck with this one doctor, because the rest in NY are vascular. I am also willing to travel to SF and possibly LA or TX since there is a limited number of experienced thoracic surgeons in general from what I've found so far. Any input would be appreciated.

I posted a link to a couple of dr's in your other thred.I also have neurogenic TOS and also have started to look into surgery. I have done alot of research, and have read numerous papers on TOS as well as gaining alot of info from this forum. I had a BPMRI which helped confirm my initial diagnosis,but all it showed was neural edema. I would wait until you find a surgeon before you have the MRI because each surgeon has particular tests that they like.

the The Vascular Dr's also operate on Neurogenic TOS. In L.A. All 3 Dr's that do this surgery are vascular surgeons. There are only a few neurologists in the country that do scalenectomy only and maybe nuerolysis) (Dr Brown in San Diego, Dr. Sanders/Annest in Denver) but if you need the ribs taken out you will probably need to go to a vascular surgeon anyway because there are blood vessels and veins involved.

There is a member that had a scalenectomy only but then had to go back for a second surgery when they found the rib impingement because the first dr. wasnt a vascular surgeon.
I'm sure there are some other people on this forum who have had cervical ribs taken out who will weigh in.
if you see Dr. Fantini in NY let me know, I have family in NY and would consider going there.I am still taking the PT route for now, I found a really good PT that is helping me now--- finally

Good Luck,
JKL

[parbie]

Originally Posted by Jo*mar

Hello & welcome parbie,

I don't know if such drastic surgical measures are always indicated, usually if the extra cervie ribs are present and removed, you may, or may not, need all those added procedures. That's why the various testing and multiple expert opinions are needed. And the skill & expertise of the surgeon when he gets eyes on, sometimes there are little surprises that just don't show up on any of the tests or imaging.

We have had a number of weightlifters with TOS joining this past year..

It is amazing when extra c ribs are getting missed with MRIs, but I guess if the order says to check c spine vertebrae for issues, or how ever the order is written, nobody looks any further...

NeoVista MRI - Your extra c ribs are already found now, so I don't know if this extra step is really necessary. It may show other issues that need to be addressed, but I'm not that familiar with that MRI, so maybe others that looked into it will have more input on it.

I'll leave the thoracic vs vascular surgeon topic to those that have gone down that path.

Thanks Jo*mar. I guess when I see more surgeons I can figure out what exact procedures I would need. However, one thing I def don't want is to do a surgery and have just a scalenectomy or just rib resection, and then have to come back months or years later for a second surgery because of a recurrence. I will copy paste what I read below indicating what could happen:

*edit* ( © 2009-2012 WUSM)


As for the MRI, it is a fairly newly developed MRI that is "the most effective imaging modality to confirm the diagnosis of TOS". However, I guess you are right in that my cervical ribs have been found through a CT scan and the scalene block should be enough to confirm the diagnosis. However, the reason I am skeptical about the scalene block being a confirmation, is that I had a medial branch nerve block a few months ago (on my neck) when I had been misdiagnosed with cervical facet syndrome. The block gave me relief. However, once I had the ablation done (to burn the nerves), I did not feel any better.

[parbie]

Originally Posted by jkl626

I posted a link to a couple of dr's in your other thred.I also have neurogenic TOS and also have started to look into surgery. I have done alot of research, and have read numerous papers on TOS as well as gaining alot of info from this forum. I had a BPMRI which helped confirm my initial diagnosis,but all it showed was neural edema. I would wait until you find a surgeon before you have the MRI because each surgeon has particular tests that they like.

the The Vascular Dr's also operate on Neurogenic TOS. In L.A. All 3 Dr's that do this surgery are vascular surgeons. There are only a few neurologists in the country that do scalenectomy only and maybe nuerolysis) (Dr Brown in San Diego, Dr. Sanders/Annest in Denver) but if you need the ribs taken out you will probably need to go to a vascular surgeon anyway because there are blood vessels and veins involved.

There is a member that had a scalenectomy only but then had to go back for a second surgery when they found the rib impingement because the first dr. wasnt a vascular surgeon.
I'm sure there are some other people on this forum who have had cervical ribs taken out who will weigh in.
if you see Dr. Fantini in NY let me know, I have family in NY and would consider going there.I am still taking the PT route for now, I found a really good PT that is helping me now--- finally

Good Luck,
JKL

I responded to you on the other thread as well about the vascular vs thoracic surgeons. Thanks for explaining that, I will probably give vascular surgeons a try too then. Especially since there are a lot more of them then thoracic in NYC. Dr. Fantini and 7 others are vascular surgeons, only one thoracic. I most likely will be seeing Dr. Fantini. I am not sure how much experience the other surgeons have with TOS although the website (they are all at NYU) indicates they are TOS specialists. But I guess you don't know how much they really know until you see them and find out their surgical history and success rates.

I also had a BP MRI that showed non-specific hyper intensity in all trunks and my suprascapular nerve. However, 3 doctors that I have seen have no idea what that even means. They just say its unclear. One doctor said it means inflammation. I guess that would make sense if my ribs and/or scalene muscles are compressing my BP.

Will keep you posted about my visits with surgeons here, I am going to start in NY and go from there.

[Jomar]

I think some have had MRI or maybe CT?? where they could place the arms in various positions , and that might show more details of what is compressing things.
Usually if you have the extra C ribs , those are the main culprit, but as others have mentioned post surgery, once the surgeon gets in there they might find anomalies to the norm. Double veins, nerves or veins wrapped around a bone or each other... lots of variations between us.
That's why you need a skilled surgeon that can handle any of those things that might arise.

[brmr19]

the NeoVista MRI is only done by the company because they have a patent on the mri. it is very expensive and some insurances will not cover it. the company is only in certain states and i have read good and bad comments about the readings. everyone has their own opinion of course, but if the mri that you had showed a problem, i think it would be unnecessary to have another mri. good luck finding a surgeon. a vascular surgeon does more of these operations because of the blood vessels in the area and the delicate surgery, at least that is what i have been told.

[astern]

Thoracic surgeons do a lot of heart surgeries, lung, transplants, etc. Their main goal is keeping critical patients alive, so they arent too concerned with the soft tissues that can be damaged when opening up the chest cavity (breaking ribs). They just want to keep you breathing or pumping blood. There is some generalizing here - may not be true for all Docs in this field.

This was told to me by the thoracic surgeon who 'claimed' to be able to do a 1st rib resection. Once he opened me up and saw the complexity of the Thoracic Outlet area, he was overwhelmed and closed me up again (after 4 hours of my arm in a metal clamp, the nerve was so mangled, it later had to be removed).

Vascular surgeons are more aware of the soft tissues involved. nerves, veins, arteries, fiberous bands, etc. And they are also more aware of anomalies, so they can deal with 'surprises' once they are inside.

This was told to me by my vascular surgeon, and also what I've learned from reading others posts and my personal experience.

[Sheri_TOS]

I'd agree with Astern's comment descriptions of thoracic and vascular surgeons. My surgeon was a vascular surgeon. In my case, there was a surprise in surgery. Surgery ended up taking more than twice as long as expected due to a very large bone growth on the first rib. I've been told that this type of bone growth is very uncommon. A scalenectomy wouldn't have worked for me. This side is doing great.

I have a hypertrophic C7 transverse process on the other side. I've been told that it's not considered a cervical rib because it doesn't communicate (i.e. touch) the 1st rib but it does impinge on the brachial plexus. I will be having surgery this summer to have this side addressed.

[nospam]

Since you have cervical ribs I think it is a given that rib resection at a minimum is necessary, I have searched high and low and there are no gold standard imaging tests. The surgeons often find stuff that don't show up in imaging which is why I recommend utilizing an experienced vascular surgeon over a neuro or thoracic surgeon. I had several MRIs and angiograms and nothing fully predicted what my surgeon found inside...and each side was different.

I recommended consulting numerous surgeons (between 2-5). I consulted 5, 4 of which were vascular surgeons. The 5th was a neurosurgeon who had done surgery on my C-Spine and he referred me to a vascular guy.

I would let the surgeons explain to you why they choose a supraclavicular vs transaxillary approach. Some even use both (transaxillary for the ribs and supraclavicular for the scalanes). I believe surgeon skill and experience is much more important than their approach of preference.