THORACIC OUTLET SYNDROME & CERVICAL HERNIATION

[JGLU]

IN 1994 I HAD THORACIC OUTLET SURGERY, FIRST LEFT RIB RE-SECTION. NOW I HAVE PERIODIC STIFF NECK,SEVERE NECK PAIN ON SAME SIDE. HAD MRI MY DR. ADVISES I HAVE MAJOR HERNIATION IN CERVICAL AREA CAN THIS BE RELATED TO ORIGINAL INJURY OR SURGERY??

[KLR1962]

I have been seeing Dr Jordan for a year and a half.  He is amazingly intelligent, great patient advocate, and stays at the front of thoracic outlet syndrome.  He even recently wrote a book published by Springer Publishing for the Medical Community regarding Thoracic Outlet Syndrome.  He treats me with Botox, using both EMG and ultrasound to make sure it is in the correct muscles.  He is expensive but worth it.  You can make payments.  Before I saw him I was suicidal from constant pain and lack of sleep.  My life has totally turned around.  

[MsDoyle]

I have been diagnosed with TOS in the LA area but I have Kaiser insurance. The best Dr. to see is Dr. Gelabert at UCLA. He is an amazing vascular surgeon that has done over 700 of these surgeries, and on several people I personally know. I am fighting with Kaiser to be able to see himn out of network since they claim their doctors are capable of completing this surgery, but I have not met a single doctor of theirs that has done more than 10 of these surgeries, which by the way are not very easy while they can provide amazing releif. My scalene block showed I was only getting a blod flow of 5cm/s while having symptoms, regularly 60cm/s with no symptoms. The most amazing physical therapist Joyce Wilkinson was able to help some, but even she told me I need surgery! I hope your fight goes better than mine! Good luck...I have had some luck with medication but I'm not sure they are worth some of the side effects. BTW no one can believe I am still working with all the pain and medication I am having.

[JL310]

Hi I just realzed these posts are old. If anyone in the L.A. area can give me some advice or their experiences with TOS I would appreciate it.Does anyone have any good Physical Therapists in L. A. that has helped them?
Thanks

[JL310]

Hello,
I am also in L.A. and I am going through the same thing. I am considering the Scalene Block injections for TOS I have seen Dr. Filler who was very knowlegable and is the only Dr. that uses MRI guided Blocks,but is not in my network so very expensive. I liked him alot and gave me alot of info and will check with my insurance. I also  have seen Dr. Williams at Kerlan Jobe who diagnosed my TOS after a year of treatment for a bulging disc. however its hard to get much info out of him and it seems s kind of like a facotory there..They use Ultrasound guided blocks which in my understanding they  cant see what they  are doing as well.They take my insurance though. Dr. F does not recommend  Botox and uses a different drug(Vitrase?) I have an appt with Dr. Jordan scheduled but its$ 600 and he doesnt take insurance,but hes supposed to be the best. Who is your Dr at UCLA and does he do the scalene injections?

[mandyjane46]

Not much consolation but you are not alone in locating great areas of confusion and perplexity in the medical profession. I had a thoracic disc prolapse last year..the long and short of it being that I can no longer walk properly, have continual mid back and right leg pain and numbness in areas I should not be numb. The diagnosis has gone from cord compression,nerve bundle compression,MS,Guillard Barre and finally stress..despite a wacking great prolapse on MRI and finally EMG tests that showed nerve damage.then i was offered open back surgery and told the risks of paralysis were10%!!!!!
Finally after alot of research and pain i found a good neurosurgeon in the city near me,who specialised in nerve damage and spinal injuries,Ive seen him once,he immediately picked up scoliosis and laudosis on top of injury that iis important.He is not rushing into surgery nor is he telling me its stress!!! Im seeing a colleague of his to clarify areas of nerve ?muscular problems and we go from there.SO very different from a year under another hospital.Good Guys do exist,Sadly there is still much to be understood about particularly thoracic problems as its a risky area and few have real experience and expertise.However keep up the fight...dont give up...they exist..
All the very very best to you

MJ

[cricket66]

Hi David.  Already had the block.  Now going for the Botox.  I feel for you.  My primary care MD said they wouldn't write a letter to justify me going out of network to see a specialist at a very prestigious hospital in a large city within 50 miles of me, I live in NH.  I've seen 12 IN Network MD's who were perplexed, and couldn't pin down the cause of my pain, but could say that the 3 c-spine disc bulges with a tear was not the cause.  I try to stay positive and hope i get better soon.  I am an exercise physiologist and I haven't worked out in one year now.  :( .  Hoping Botox allows me to tolerate PT long enough to strengthen and relax muscle accordingly......avoiding surgery.  keep in touch.

[iamintent2bme]

I am in the process of trying to get a diagonsis and treatment rendered for what seems to be behaving like throracic outlet syndrome.  I am appalled at the total ignorance of or vagueness by the medical community in treating me or giving me good information about how to correct what has been becoming a progressive numbness I've been gaining in my hand.  I've had an ulnar nerve transposition done... which cured nothing.  My left small finger and the next two  are gaining in the numbness i feel.  I have had a brachial plexus MRI done, and the radiologist of that MRI told me that he suspected TOS because he saw areas where blood flow  seemed to be blocking suplly of blood to different areas of muscle.

I am about to get a scalene block test done, after which the orthopedic neurologists tell me I may get a rib resection performed if the scalene block test confirms thoracic outlet diagnosis.  I'm also being told that possibly a botox injection can help with the pain/numbness/ loss of dexterity i'm experiencing in my hand. I was also told  bhere might be some type of procedural or surgical option that could be indicated as an option with treating my scalene muscle.  

I am completely on my own with this condition.  I can find no clear descriptions of potential options available to me, or dangers to  avoid that may be presented to me.  I've already been subjected to one completely unnecessary surgery on my elbow to move my ulnar nerve.

I'm just trying to find some source of support for what to do about this, and am not sure where to turn.  I googled Thoracic Outlet Syndrome, and found this forum out of the Cleveland Clinic.  And I found your post on Thoracic outlet, so I wanted to respond.  I'm desparate to find someone else that has even heard about what I'm struggling to find treatment for.  To date I've had this for going into my third year now, with no conclusive treatment of diagnosis about what to do.  The most clarity I've found is this doctor at UCLA (In Los Angeles) who will be performing this scalene block procedure on me in a week.  

I have had nerve conduction tests done, multiple MRI's, XRAYS, a CAT SCAN where they injected dye and tried to identify blocks, and this god dforsakend surgery that transposed of moved my ulnar nerve.  Neurosurgeons at a Kaiser facility claimed to rule out any need for a laminectomy, or foramenectomy, but other neurologists still claim I have some C7 - C8 type of obstruction, with some arthritic looking "typical to my age he said- (age 58)" type of bursars on my C4-C5  spinal nerve outlets.  

I'm not sure how this forum works, but if any of my symptoms sound familiar to you, or if you... or anyone... has any suggestions about how or where I could find others with this condition to speak to to compare symptomology, or difficulty in diagnosis, best chance for eradication/ living with this... i'd LOVE TO HEAR BACK WITH SUGGESTIONS.

THANKS... DAVID