Having read many stories on this website regarding doctors visits I must say.....what Doctors visits?

I was sent for 3 tests in 2005 and received the following results.

Test 1:

Right & left venous duplex ultrasound:

"On abduction to 180 degrees there is a complete occlusion of the elft axillary vein and significant dampening of the waveform of the right axillary vein. The sonographic features are consistent with bilateral thoracic outlet syndrome more marked on the left side"

Test 2:

Arterial Doppler Ultrasound Both Arms:

"Normal flow, waveforms and velocities are present in the axillary, brachial, radial and ulnar arteries in both arms on restting. However, on further abduction of the right are with the patients hand behind the left side of the head there is amarked reduction and dampening in flow and velocity in the right azillary arter. On the left side, with abudcution marked reduction in velocities and dampening of flow is demonstrated within the left axillary artery" The appearances are consistent with balateral thoracic outlet syndrome which is more prominent on the left side"

Test 3:

MRI Cervical Spine:

C5/6 demonstrated a focal central disc protrusion indenting the ventral sac and compressing the cord. This causes AP canal narrowing of 40% centrally. Mild left entrance zone forminal compromise is seen abutting the left side exiting C6 nerve root.

C6/7 level is notable for a small discovertebral ridge in the left entrance zone foraminal region abutting the exiting left C7 nerve root.

I returned to the surgeon (spinal surgeon) who organised the tests and he referred me to a "hand surgeon" who has a interest in thoracic outlet syndrome.

I seen the hand surgeon who stated that she could remove cervical rib but success rate for surgery was not very high & very painfull. She had only performed one other surgery similar to this. (Probably because she was a hand surgeon!)

She sent me back to original surgeon (spinal surgeon) and he sent me off to physiotherapy for 9 months. I have since stopped going to physio due to very little improvement. I havnt seen anyone since. My local Dr just provides me with pain relief like Panadeine forte.

My big question is this. Should I be on some other meds??? Does anyone use anti inflamatories? Do they work?

What about the Dr situation? Should I be seeing someone else?

I hear a lot of posts about other treatments scalene, botox etc. None of this has been mentioned to me. I just take meds (that rarely work) and hope for the best.

Any advice would be beneficial.

My main doc is a neurologist. I was referred there from my orthopedic doctor in the beginning. In the US, many neurologists use botox for various muscle spasm issues.

I also use Hellerwork, and have had some real success loosening muscles that way. Other similar techniques are alexander and feldenkrais.

Chiropractic is another good avenue. I just recently found one who can do the first rib adjustment, she's a keeper.

Hellerwork and chiropractic you don't really need anyone to refer you for. That is how I started doing them...just decided one day that I needed some help getting to a point where I could sit up straight so I started going. Chiropractic is covered on my healthcare, but the hellerwork is completely out of pocket. Of course, it is really worth it, that's why I keep at it.

I only take pain meds myself, I think others have success with muscle relaxers. TOS generally results in muscle spasms, so that makes sense.

It may take several visits to various doctors before you find one who understands what is wrong with you, but I would encourage you to continue trying and bring you research from here to them, see if you can at least find one who is open to learning how to help you.

Good luck
Johanna

A neurologist who is associated with a major hospital or University medical school program is most likely to be more familiar with TOS. This Dr should be able to dx. TOS, order whatever other tests are required to rule out other dx's, and perhaps refer you to a specialist. It might be useful to have a chest x-ray done beforehand, as this is almost always required - this allows the Drs. to see if there may be other problems such as an extra cervical rib, misshapen collar bone, large ribs, or other abnormalities present that show up on the film.

Thoracic or vascular surgeons also see TOS patients in the US, confirm dx and suggest treatment. These are the types of Drs who typically do surgery for TOS, there are some exceptions to this among hand surgeons and neurosurgeons I believe.

It sounds as though you may have some issues with blood flow when your arms are in provocative positions. I would be concerned as well. I think if it were me I would ask to see a vascular surgeon - perhaps two, to see if their opinions are the same. You may want to ask family or friends if they know of or have seen a Dr like this they would recommend (or not recommend, as the case may be).

With vascular TOS, if the damage being done due to compression of the vein and/or artery is significant, or the risk of a clot developing is fairly high, then surgery is often advised. Sometimes surgery can be avoided, but it is advised more frequently for vascular cases of TOS. The outcome is also generally better in these cases than for neurogenic TOS.

I'm not a Dr, just trying to help, please take what you can use and ignore the rest. (It's getting late, so if I made any glaring mistakes, please forgive me!)

beth

[C5/6 demonstrated a focal central disc protrusion indenting the ventral sac and compressing the cord. This causes AP canal narrowing of 40% centrally. Mild left entrance zone forminal compromise is seen abutting the left side exiting C6 nerve root.]

I was wondering about this?
what do they say about the C5/6- do they think it is not causing any of your pain or sx?
Or do they feel it is not the main cause?

Can you list and describe your symptoms and locations, maybe we can help you to pinpoint what your focus should be on.

Thanks Jo. I have a few symptoms the main ones are: heavy arms with use above 180 degrees and driving etc, severe thumping headaches at base of head (similar to ice cream headache but much much worst, thumping lasts just seconds but is very severe), pressure in head, loss of hearing (can hear own heartbeat, but not much else), sore / painfull neck/cervical area, sore face, pain in arms, swollen hands/fingers, purple/cold hands. The Dr's I have seen indicate they can not tell which problem TOS or neck injury is causing each symptoms. I do know that i have nerves/arteries/veins involved with a set of extra cervical ribs. Apparently not too many people have all 3 involved.

Hi Ozzy, everyone..

I have been dealing with the EXACT same things Ozzy.. I have an Artierial Subclavian compression and I can't get a Dr. to DX TOS...I have seen at least 7 different Dr's here in Mass and now I see another new one soon. It's frustrating trying to explain your problems to Dr's that don't take TOS seriously, but yet we suffer.. Go figure ! Thanks for all the posts ! Hope everyone has a pain free rest of the weekend !

Dolfinz

Ozzy- I thought cervical ribs were a pretty easy decision- if causing so many problems they are generally removed..usually along with the first rib.

Swelling and Purple/cold hands is either a big vascular issue or an RSD/CRPS issue.


not so sure about the face stuff, could go either way. In any case, if you have TOS and it is causing at least some of all these awfule symptoms, removing the cervical ribs could be a very positive first step to sorting it out.

I don't mean to sounds surgery happy, but it sounds like you should at least get the opinion of a surgeon. I am not one to sit on my laurels, I usually am out there searching for answers from whoever i can get them from. Neurologist, vascular surgeon, I'd be looking them up and paying visits.

good luck to you.

Johanna

I'm surprised they {drs} aren't more concerned about the extra c ribs? Do they show up as small or an incomplete set?
{some will have a large or full set and some only partial set}

I always thought in most cases extra c ribs were a definite positive for TOS if the symptoms fit also.

If you aren't in high pain or constant pain they may not want to risk doing any surgery yet.

I would call around to hospitals or dr offices and ask lots of questions to try and track down an expert surgeon or doc that has a firm knowledge of TOS.
Even PT places and therapy rehab places might be of help with that kind of info.

Is there any of the advanced imaging places in the area?
3D MRI or MRA? I might have the names wrong or maybe there is another one I can't recall the name of it.

Hi there everyone,

The surgeon I have seen, hand surgeon with an interest in TOS, stated that the operation to remove ribs would be an absolute last resort. She stated that it is not a highly successful op and quite dangerous considering how close they would have to go to the arteries etc. I dont know if they are a full set or half set but they are only about 4cm long and can be seen on an ordinary xray. All Drs agree I have TOS but noone gives me any info or follow ups. I think they dont know enough about it. Probably hoping id go away!!!

First of all, you see a hand surgeon for hand surgery. See a vascular surgeon for TOS of any kind. If they are worth their weight in their medical degree they will know how to take care of all kinds of TOS not just vascular.

I had a very successful TOS surgery done by Dr. Charles Brantigan in Denver 8 yrs ago. I had all 3 types of TOS and a severe case too. He did the vascular, arterial and neuro TOS surgery on me and I am back at work for the past few years in medicine and have no pain and on no meds since the surgery.

Yes, your hand doc is correct the surgery is hard because the area is around lot of major blood vessels that's why most VASCULAR surgeons do the surgery and not hand surgeons!

It makes me cringe when I hear stories like yours that a hand surgeon is talking about how bad TOS surgery is and not telling you who to see or which doctor is better for it. There's a rule of thumb in medicine, only see a doctor for surgery IF they do at least 50 to 100 (a YEAR) of the type of surgery the patient needs done.

If one does their homework it isn't all that hard to get to Denver to see the experts. You can also call the office 1-800-992-4676 and see if you can send the reports and films you have to him first before going out there. Not sure if he does that but it's worth the toll free call.

Good luck to you.