frustrated...
 

Hello all
I'm fairly new here and was recently diagnosed by my neurologist and the neurosurgeons from Jefferson Hosp Philly with TOS. Now the frustration, my thoracic surgeon wants a ulnar nerve conduction across the thoracic outlet and my neurologist refuses to do it as the Neurology association doesn't think it's reliable. Plus she states it EXTREMELY PAINFUL and doesn't think it's worth the pain.
NOW WHAT DO I DO?????

You have had MRI & Xrays of the T & C spine correct? to rule out any or other problems there?

My EMG/NCV wasn't very painful at all but for some it is.
It's kind of one of those ruling in/out type of tests that is probably good to have.

That might be a good quick poll to see who have painful MEG/NCV.
I'll go make one so watch for it.

Was dr specific about your type of TOS, or exactly what or where your compressions are?

I've had the gammet done. mri, ct and cta to r/o arterial occlusion. I do have DJD of all cervical discs PLUS small herniation at c-5/6/7. But Neurosx told me that wasn't causing my symptoms.
I have compression of all three nerves (radial, medial and ulnar) but with compression of radial and medial it can stem from other areas. The test my doc ordered is across the thoracic outlet. Which has to start at the base of the neck and go from there. Doesn't even sound pleasant. If I can't find someone to do this specific test, I have to endure a stellate ganglion nerve block to r/o RSD. I know I don't have it and my doc is pretty sure I don't but he's really precautious and doesn't want to do an unneccessary surgery, IF in fact it turned out to be RSD. (my sister and hubby both have RSD so that's how I know I don't~ my symptoms are COMPLETELY different from theirs).
I also work for vascular surgeons and my guys have already diagnosed me with true neurogenic TOS ALONG with the Neurosurgeons from the Rothman Institute. I can barely type this today, my hand/arm is so weak and aches. I dropped so many things yesterday it wasn't funny! ( I over did the housework over the weekend :( ) I also own a horse farm which lends to my problem. Normally I can handle my farm chores because I'm very careful, but the housework kills me! (washing dishes, laundry, vacuuming etc)
Sorry for the rant, I thought I was finally heading towards a recovery, now this roadblock.

Just curious who your Dr. in Philly is. My diagnostic neurologist was Dr. Schwartsmann. My Thoracic surgeon was Dr. Togut in Wilkes-Barre. I have to admit, my EMG was very painful. I had two. The second one I would not let them do the electro shock part. They made me sign a release. My husband just had one on his shoulder for a rotator-cuff injury and it hurt him. He is 6'1" and almost 300 lbs. I felt awful watching but wanted to be their with him. Best of luck. Linda

I would call Dr. Scott Frieds office, DeKalb Pike near the Plymouth Meeting Mall. He uses Rick Reed and Tom Tolson. Tolson of the two has published on EMG for TOS.
I found the test not a real pain, the needle part of the emg near the wrist to check for carpal tunnel was the most pain and it was over swiftly.
THe NVC is a probe in the palm, and the probls is at the brachial plexus area of the collar bone pressed down hard to send a signal to the palm receiver. Anythingpressing hard on the inside of the collar bone is sensitive with TOS.

You can trust Scott, and his staff!

They are top in the field of EMG/NVC for TOS. Dr Fried is dedicated to his patients and does a great detailed exam and evaluation.
We have been there several times in our family.

He is online at www.nervepain.com
Dianne

Thanks for the info DiMarie.
I'm waiting on a call back from my TOS doc to see if he is really insistant on this test or if he is going to call my neuro doc. If I have to have the test I would rather try to stay local. I'm just not crazy about anyone sticking needles in my collarbone area! to many veins/arteries and nerves to mess up. AND I'M A BLEEDER! so if they miss and hit something, I'm screwed. (bleedtime 8 minutes:eek: ) I've had emg done in the past and bled all over the table. The doc was really surprised. I forwarned him but did he listen???? NNNOOOO.
Hey Linda..
My doc has done several of these surgeries in the last few years but not thousands as some of the docs affiliated with this forum. He's a well respected cardiac and thoracic surgeon. I would rather not give his name as he doesn't want to become a TOS surgeon specifically. He is well schooled in the area tho. I can PM you his info tho.
His patients have had much success with surgery and only one had Postop complications which PT rectified. He has been very honest and upfront with me and I'm confident in his skills.
on a personal note Linda, Where are you located? I'm in Burlington Co in the southern half of NJ.

dangerous test is right....
 

My thoracic surgeon told me not to get this test as it is a dangerous area to ensure you are in the right place to get the right signals. He told me to live with the pain..with management of course...not sure I agree with that I am a test person despite the info on tos being not really accurate unless you have a major neurological loss due to long term compression......EMG shows that well.

There are several articles to say emg is not accurate....however this dangerous test may give you the answers you need to find out where your issues are.

Have you thought of having the doctors talk on the phone??? Perhaps this could help.

Another idea is to look for articles yourself on Pubmed to find the reasoning not to do the test and reasons to do the test and form your own opinion.

You may also consider asking your neuro for their info on why it is not effective.

Just some thoughts....hope things get easier for you.

hugs,
Victoria

To: Horsemommy
 

Hi, I live in Tinton Falls, Monmouth County. My Surgeon was Dr. Togut. My diagnostic doctor in Philly was Dr. Schwartzman. I saw my neuro in June who told me to go to PT. PT was awful, after 2 visits I stopped. I saw Dr. Togut today who told me DO NOT do PT. It is my Trapazoid?? Sorry not good with remembering all he said. He gave me a few shots in neck and shoulder. At this time, actually worse. Gave me some muscle relaxers, Skelaktin? Haven't tried it yet. Just finished dinner and dishes. Four year old daughter had ballet. Just want to finish cleaning up and get ready for tomorrow. My hubby is having rotator cuff surgery. That will be my day. Hoping all goes well. He has had a tough time. Fell and broke his tail bone in May. Had to say, I always said he was a pain in the butt and now I have proof. Shoulder has been going on for awhile.

Take care of yourself and have a good day. Where in Burlington County are you. I used to spend much time on Jersey Shore.

Also, DiMarie, Dr. T. gave me the self help sheet today. I am sorry but I do not believe I will get a corsett. Don't tell him!!

Thanks for everyones help, Linda:winky:

I'd vote to have your two docs talk to eachother and decide what to do.

there are ways to decide if it is or is not tos w/o that emg test.

they should be able to come to some agreement.

good luck.

Corsett
 

Hi Linda,
Glad you got in to see Doc T.
I once told him I am bringing him a corsett and he has to experiance, especially the part of how the ehck to you hook the numerous clips and then turn it around.

I do have a few Bras that have gel on the shoulders and recent one that EnglishsheepDogs got me hooked up with a Balie, great no lines and wonderful no feeling support. Most natural appearing bra for me.

I would if I could get a no strap tube type, but with cups...a bandeu (sp) type bra. not a tube, but small three inch strap corseet type. FRONT HOOK too.


HORSEMOMMY, there were no needles in the collar bone are on mine, it was a pauls thing, it lay against the collar bone, I think I would have jumped off the table to think of a needle in there. I had the pain in the wrist, and when the did the tarsal tunnel in the ankles.

I hope you find help locally, I don;t know how close Baltimore is there are a few specialist there.
Dianne

emg (yikes)
 

I think that many people with tos have brachial plexus injuries to start with.

I have a brachial plexus stretch injury and when I had the emg and ncv I had excruciating pain and a big time flare up after. In this day and age modern medicine can't develop a less barbaric diagnostic test?

When you think about what they do, is shoot electrical current through your injured nerve( if that is what you have) The neuro got up to erb's point and there was no reaction in the nerve at all.

I have had one and I have refused the test many times since. It is not necessary in my case. I was told at my physical therapy/pain clinic that emg's can cause rsd.

From what I recall in reading the emg will only be positive if there is really severe long time compression. My injury was 4 months old and my emg was very positive.

Dr Ellis website may show info

www.doctorellis.com
or
www.tellmeabouttos.com

****************
this is from Dr Ellis' website
"One should also bear in mind that other disorders can cause generally similar symptoms and include pathologies at the neck, shoulder, and shoulder blade, as well as the very rare tumor. A variety of systemic diseases can produce these symptoms through other mechanisms that irritate the brachial plexus. Because of this, a thorough blood and imaging workup is a routine requirement and includes analyses for systemic diseases (autoimmune, hormonal, and tumorous), x-ray for both bony and spinal abnormalities, and electrodiagnostics for frank peripheral neuropathies. Magnetic resonance imaging...(MRI) of the brachial plexus, using 3-D reconstruction or neurography, can often be helpful in determining localized strictures or deviations of the normal course of the nerves in objectively substantiating abnormalities that point at TOS. Doppler ultrasound, comparing flow with the arm extended and flow with the arm to the side, can also be helpful. Electrodiagnostics are not as helpful, but they rule out other potential causes. I have found thermography to be a very sensitive indicator of abnormal peripheral nerve sensory function/irritation and that it objectively substantiates abnormalities much more frequently than any other imaging modality."

**********************************
This is from the tellmeabouttos site:
" Diagnosis

Physical examination is most helpful. Common findings are tenderness over the scalene muscles, located about one inch to the side of the wind pipe; pressure on this spot causes pain or tingling down the arm; rotating or tilting the head to one side causes pain in the opposite shoulder or arm; and elevating the arms in the "stick-em-up" position reproduces the symptoms of pain, numbness, and tingling in the arm and hand.
Diagnostic tests, such as EMG's (electromyography’s) or NCV's (Nerve Conduction Velocities), may show non-specific abnormalities, but in most people with TOS, these tests are normal. Neck or chest x-rays may show a cervical rib (extra rib). Loss of the pulse at the wrist when elevating the arm or when turning the neck to the side (Adson's sign), has been thought by some to be an important diagnostic sign. However, it is sometimes unreliable because many normal people also lose their pulse in the same positions, and the majority of people with TOS do not lose their pulse in these positions. Shrinkage of hand muscles (atrophy) occurs in about 1% of people with TOS, and these people will have nerve tests that show a typical pattern of ulnar nerve damage.
To aid in the diagnosis of vascular or arterial TOS, vascular studies may also be recommended by your doctor. The most non-invasive would be a Doppler study, which is an ultra-sound picture of your veins and arteries. An MRA (magnetic resonance angiography) is another option. An MRA is the same as an MRI (magnetic resonance imaging), only a special dye is injected into the veins so they show up during the images. This makes it easier for doctors to see if there is a blockage in the veins. A more invasive test would be a venogram, which requires an IV to be started. Dye is injected into the veins while the images are being taken. This gives doctors a clear picture of the entire vein as it travels through the arm. Venograms are typically a last resort, but are often necessary in the diagnosis and treatment of severe vascular and arterial TOS.

**************************
this is info about Erb's point

"Keywordshistory • anatomy • neurology • nerves • neck • cutaneousAbstractWilhelm Erb is well known for his early contributions to the field of neurology and was an eminent physician of his time. One area described by him and that still bears his name is Erb's point. This point located just superior to the clavicle was used by Erb to transcutaneously elicit contractions of various proximal arm muscles with electrical stimulation. Many have mistakenly interchanged the terms http://www3.interscience.wiley.com/g...y/12/ldquo.gifErb's pointhttp://www3.interscience.wiley.com/g...y/12/rdquo.gif and http://www3.interscience.wiley.com/g...y/12/ldquo.gifnerve pointhttp://www3.interscience.wiley.com/g...y/12/rdquo.gif when describing the point of emergence of the cutaneous branches of the cervical plexus near the posterior border of the sternocleidomastoid muscle. We present a brief history of Erb's adult life and review his original description of his supraclavicular point and contrast this to the so called nerve point of the posterior cervical triangle. Clinicians and anatomists should be aware of the discrepancy often found in the literature between these two terms." Clin. Anat. 20:486-488, 2007. © 2006 Wiley-Liss, Inc.Received: 16 February 2006; Revised: 4 May 2006; Accepted: 23 May 2006Digital Object Identifier (DOI)
10.1002/ca.20385 About DOI

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I've had emg's in the past, the most recent was in 2005 because they thought this was carpal tunnel. Which of course showed damage to the medial and radial nerves. Moderate disease. When my old neuro did it I got a sustained twitch in my hand which he had to reshock it to stop it. I did not however have the ulnar nerve done. I know that emg's can be painful but I'm willing to go thru with it to get to my conclusive answer.
I spoke to my TOS doc yesterday and he agreed to a plain old emg of the ulnar. I'm waiting on my neuro to call and schedule it. again.
I have an appt with the pain management team on 8/1 at which time they will decide if I need a stellate ganglion nerve block. The anesthesiologist may not agree with a pos RSD diagonsis and not do the block. I know it's not RSD, but you have to go thru the whole protocol to be sure.
I do have muscle waste in the palm of my left hand. classic sign of neurogenic TOS along with loss of strength, loss of reflex in my middle finger and thumb, heaviness, cold intolerance and throbbing/aching pain along the ulnar nerve. No burning or hypersensitivity, which is typical in RSD. If I rest, it's manageable but never resolves. RSD never rests or subsides.
So the waiting continues......:(