Originally Posted by nospam

Great update. :thankful:

With severe right foraminal stenosis, I would consult a neurosurgeon. I've had both types of injections and got better relief from the medial branch FB. There is also an intra articular FB which injects the joint itself but I doubt that is what he is offering (I've never had this).

With my TOS, I was never able to truly strengthen without flaring prior to the rib resections. We are all different but you may have to give up on strengthening to stay functional.

Originally Posted by jkl626

So I tried a new PT yesterday-Dr Chan who Dr Jordan recommended and someone on the forum went to both him and Dr. Ando and said they would complement eachother. The first thing he did was put heat and electro-stim on my back and neck . Then he examined me- he pressed really hard on my scalenes, pec minor TENDON, and Rotater Cuff. I told him I didnt have rotator cuff problems-didnt even know where it was. All were excruciating. I have never had anyone press on the PMT or RC. Then he had 2 assistants do ultrasound on them, then he moblizied my neck and back(around my scalpula) by pressing, and adjusting then on ice, then kinesio tape. Very different from Dr. A. He said to give him 2 weeks and see how I feel and just do a couple of things at a time. My left side is worse than my right at the moment and I wasnt feeling that bad to begin with. Its pretty convenient so well see how it goes. AND I DIDNT GET FLARED UP.At any rate he treats alot of TOS patients. I will probably still go to Dr. A every few months or so. My goal is to go back to work in July. Keep your fingers crossed for me!

Originally Posted by Limoges

What is Pilates doing for you? I would think it would be very aggravating to TOS. I've had to give it up since surgery, but then again, I no longer have pain or symptoms, so I accept the tradeoff, no problem.

Originally Posted by jkl626

So I tried a new PT yesterday-Dr Chan who Dr Jordan recommended and someone on the forum went to both him and Dr. Ando and said they would complement eachother. The first thing he did was put heat and electro-stim on my back and neck . Then he examined me- he pressed really hard on my scalenes, pec minor TENDON, and Rotater Cuff. I told him I didnt have rotator cuff problems-didnt even know where it was. All were excruciating. I have never had anyone press on the PMT or RC. Then he had 2 assistants do ultrasound on them, then he moblizied my neck and back(around my scalpula) by pressing, and adjusting then on ice, then kinesio tape. Very different from Dr. A. He said to give him 2 weeks and see how I feel and just do a couple of things at a time. My left side is worse than my right at the moment and I wasnt feeling that bad to begin with. Its pretty convenient so well see how it goes. AND I DIDNT GET FLARED UP.At any rate he treats alot of TOS patients. I will probably still go to Dr. A every few months or so. My goal is to go back to work in July. Keep your fingers crossed for me!

Originally Posted by jkl626

Jan 2012
I made an appt with Dr. Williams at kerlan Jobe. He took one look at my shoulders and my disc mri and said he was guessing I have TOS.He sent me to Pasadena to have a Brachial Plexus MRI. The MRI showed some neural Edema , a large suprclavicular vein and possible TOS. Dr. W prescribed physical therapy and a posture shirt. By the way Dr. W has a financial stake in Alignmed which make the postureshirts. I told him I wanted a scalene block thinking at that time it would be the cure I needed. He said okay and gave me info on their surgery center with no other info . He also has a financial stake in the surgery center at Kerlan Jobe. Even though they took my insurance I did not feel comfortable with the amount of info I was getting. He didnt like too many questions and I am miss question answer. When i found out I would have to be sedated I decided that wasnt my first choice of treatment and went on my quest for a good TOS doc.

Went to Dr. Filler based on their website. He spent alot of time with me and confirmed the TOS diagnosis. He said my middle scalene was the culprit and my long thoracic nerve was involved. Told me about his fancy MR Neurography machine and if that didnt work he does scalenectomy at Cedars. Cost -MR Neurography $15,000 out of network so I would have been lucky if my insurance would pay any of it. They have a sales pitch and showed me the machine downstairs in the basement. When I got home I went online and most of the reviews are bad. There is also a fight going on btween dr. F and a former patient that you can read. After a couple of people warned me about him I decided this wasnt the one.

Started seeing Joyce Wilkinsin PT. I like her alot seems to know what she is doing. I am still seeing her but my visist are almost running out.

Went to see Dr. Carden a pain doc at the D.I.S.C. center, He is a well renownd RSD doc and has worked with alot of athletic teams .This was the most Bizarre experience. He told me I was doing to much research, didnt know what I was talking about,disbelieved the TOS diagnosis, gave me a sympathetic nerve block right there in the office and said I should get a spinal epidural,went ahead and ordered it from my insurance without asking me,got hostile when I asked for my records. Very aggressive and Condescending.

Finally,got into see Dr. Jordan and knew he was the one,even though he is cash only. He spends an hour asnwering my questions. His scalene block that he does in the office was 3500 as compared with Dr. F's 15000. Plus Dr. J explained that MR neurogrphy is outdated and what he does with ultrasound is much better because it is live. I am still waiting to see how much my insurance will cover.

With Dr. Jordan since Feb- I did

Scalene Block Injection-
It came back Positive ,but i'm not convinced since I wasnt in alot of pain to begin with.
Botox injections-
Bad reaction for 2 weeks then about a month of some releif,now symptoms are returning
Trigger Pt. Injections_
heped in a few muscles not much releif

Now Dr. J is recommending Brachial Plexus Nerve Block Injections or Facet injections in case some of the pain is coming from the facet joints.
Am still trying to decide if I want to do either of these. Bringing back the disk problem I've been ignoring is making me question all my decisions so far. I wish someone could just tell me where the pain is coming from!!!I decided I need more info so I go back to see Dr. J on May 17 and will bring my Disc MRI since I dindt have it last time. Every visit is $200.

Also in Feb, found out that a dr at Orthohealing ,Dr. Aufiero is covered under my insurance. Orthohealing is the famous place in Santa Monica with Dr. Sampson .Dr. A is Sampsons associate Dr. I like her alot and she is easier to make appts with a little more alternative than Dr. J.

She also spent alot of time with me and she and dr. J know eachother and respect eachother.

Dr. A gave me:
Amino Acids and Anti-inflammatory diet for Inflammation
The Spinal Q Brace which I finally just got and is great.
Neuropathy Cream from a homeopathic pharmacy
Recommended Trying Neural Prolotherapy if the botox or TRPS dont work.

Jan-April 2012

Dr. Williams/Kerlan Jobe
Dr. Filler
Dr. Carden at D.I.S.C.-
Dr. Jordon-Jackpot!
Dr. Aufiero -Orthohealing Jackpot #2
Joyce Wilkinson P.T. Jackpot #3
Dr. Raj-Trigger pt Massage.-Tried twice jury is still out


Okay enough Typing. Next : Surgeons and second opinions on injections

Originally Posted by jkl626

On Feb 20 I was diagnosed with Breast Cancer. I have a large mass on my left breast. After all the mri's and xrays on my right side, no one ever noticed or looked at my left side. I was so focused on the TOS for the past 2 years that I did not get a mammogram for 4 years. this is what is the most frustrating and makes me so mad at myself as I was so thorough with the TOS.I have a top of the line surgeon at Cedars Breast Center in L.A. and have been very impressed with them so far and am undergoing tests to see what kind of surgery and treatment I will have to have. Its going to be another long journey.

My spirits are pretty good-after the initial shock and sadness, I have MANY friends who have gone through this and lots of support.

I have decided in this case, NOT to go on the internet and NOT to go on the forums.It is just to scary to read about at this point anyway. It has been such a different experience with the diagnosis and dr's I cant even tell you-it is so routine-so common-I had a diagnosis,biopsy and a surgeon in 3 weeks!

The silver lining is that my TOS is alot better for the past few weeks. It seems like the less I go to PT (its beeen about a month),no massages just occaisional acupunture and feldenkreiss, and lidocaine /cortizone injections once a month. I do my exercises every day. Once in awhile I get a bad flare-up if I overstretch or am too stressed. when I went to see the surgeon I got a bad one 2 weeks ago.

I did ask dr. Aufiero if there might be any chance that the tumour has anything to do with the TOS ,because it might be heavy and my breasts are large. She thought it might not be out of the realm of possiblity. I think I will ask Dr. Jordan about this too when I see him again. I guess I will know after the surgery, and maybe I will end up with smaller breasts. Hah!

Originally Posted by jkl626

So I tried a new PT yesterday-Dr Chan who Dr Jordan recommended and someone on the forum went to both him and Dr. Ando and said they would complement eachother. The first thing he did was put heat and electro-stim on my back and neck . Then he examined me- he pressed really hard on my scalenes, pec minor TENDON, and Rotater Cuff. I told him I didnt have rotator cuff problems-didnt even know where it was. All were excruciating. I have never had anyone press on the PMT or RC. Then he had 2 assistants do ultrasound on them, then he moblizied my neck and back(around my scalpula) by pressing, and adjusting then on ice, then kinesio tape. Very different from Dr. A. He said to give him 2 weeks and see how I feel and just do a couple of things at a time. My left side is worse than my right at the moment and I wasnt feeling that bad to begin with. Its pretty convenient so well see how it goes. AND I DIDNT GET FLARED UP.At any rate he treats alot of TOS patients. I will probably still go to Dr. A every few months or so. My goal is to go back to work in July. Keep your fingers crossed for me!

Originally Posted by jkl626

So I tried a new PT yesterday-Dr Chan who Dr Jordan recommended and someone on the forum went to both him and Dr. Ando and said they would complement eachother. The first thing he did was put heat and electro-stim on my back and neck . Then he examined me- he pressed really hard on my scalenes, pec minor TENDON, and Rotater Cuff. I told him I didnt have rotator cuff problems-didnt even know where it was. All were excruciating. I have never had anyone press on the PMT or RC. Then he had 2 assistants do ultrasound on them, then he moblizied my neck and back(around my scalpula) by pressing, and adjusting then on ice, then kinesio tape. Very different from Dr. A. He said to give him 2 weeks and see how I feel and just do a couple of things at a time. My left side is worse than my right at the moment and I wasnt feeling that bad to begin with. Its pretty convenient so well see how it goes. AND I DIDNT GET FLARED UP.At any rate he treats alot of TOS patients. I will probably still go to Dr. A every few months or so. My goal is to go back to work in July. Keep your fingers crossed for me!