JKL'S TOS Journey or How I am seeing all the doctors in L.A.

[parbie]

Originally Posted by jkl626

hmm thats interesting because when I asked my dr if the BP block was a diagnostic he said its never been studied and used that way so I'm curious about that too.I will ask him again next time. I know the c-5 block will tell me if the nerve in my neck (I'm not sure what nerve it is ) is causing the pain when he stimulates it. Its good you are waiting for your vascular surgeon to get a second opinion.

I think that any nerve or muscle block can be diagnostic. Because you are blocking the pain receptors and if you don't feel pain while the medication is in your system, that confirms that those nerves or muscles are the source. The BP block probably isn't used as often as the scalene block for TOS, but I guess it makes sense to use it if the BP is the suspected source of pain. My neuro said that the BP lower trunk connects to the c8 and t1 nerve roots, he thinks those nerves are being stretched over my right cervical rib to connect into my BP. I am really looking forward to see what this vascular surgeon says this is will be my first TOS specialist opinion. When are you getting the c-5 block?

Also, do you know anything about the importance of positive EMG results to confirm a TOS diagnosis? A neurologist told me that "true" neurogenic TOS requires a positive EMG, however my EMG was negative so I'm not sure what to make of this. Some of the research I've read said EMG results aren't always a good indicator of TOS.

[jkl626]

Originally Posted by parbie

I think that any nerve or muscle block can be diagnostic. Because you are blocking the pain receptors and if you don't feel pain while the medication is in your system, that confirms that those nerves or muscles are the source. The BP block probably isn't used as often as the scalene block for TOS, but I guess it makes sense to use it if the BP is the suspected source of pain. My neuro said that the BP lower trunk connects to the c8 and t1 nerve roots, he thinks those nerves are being stretched over my right cervical rib to connect into my BP. I am really looking forward to see what this vascular surgeon says this is will be my first TOS specialist opinion. When are you getting the c-5 block?

Also, do you know anything about the importance of positive EMG results to confirm a TOS diagnosis? A neurologist told me that "true" neurogenic TOS requires a positive EMG, however my EMG was negative so I'm not sure what to make of this. Some of the research I've read said EMG results aren't always a good indicator of TOS.

EMG is not a positive test for TOS.Mine was abnormal for my c6 but not my TOS. I may be doing it again. Also there is a Mac test for Pec Minor involvement and an SSEP test.(I forget which nerves these are for.)The physical exam and the scalene block are the most widely accepted tests,plus what you read and KNOW are the symptoms. But there ARE NO conclusive tests. Thats what the big problem is.The fact that you have cervical Ribs are the most telling that you have TOS and is the easiest to see and correct. You just need to find the right Dr's.

Do you have numbness or tingling in your 4th or 5th finger? This is another telling sign.
Read this:http://surgery.wustl.edu/TOS_Features.aspx
This is the TOS Consortium Website and these Dr's have come to some widely accepted conclusions. Is your Dr. who is suggesting these injections have much experience with TOS. Whats his name?

[parbie]

Originally Posted by jkl626

EMG is not a positive test for TOS.Mine was abnormal for my c6 but not my TOS. I may be doing it again. Also there is a Mac test for Pec Minor involvement and an SSEP test.(I forget which nerves these are for.)The physical exam and the scalene block are the most widely accepted tests,plus what you read and KNOW are the symptoms. But there ARE NO conclusive tests. Thats what the big problem is.The fact that you have cervical Ribs are the most telling that you have TOS and is the easiest to see and correct. You just need to find the right Dr's.

Do you have numbness or tingling in your 4th or 5th finger? This is another telling sign.
Read this:http://surgery.wustl.edu/TOS_Features.aspx
This is the TOS Consortium Website and these Dr's have come to some widely accepted conclusions. Is your Dr. who is suggesting these injections have much experience with TOS. Whats his name?

I had read the information on that website before. Yes, I have had numbness in my 3rd, 4th, and 5th fingers but it is not always there, usually its pain. The neurologist specializes in the EMG test so I wasn't surprised that he would base a TOS diagnosis only off of that. He wants me to redo the EMG, but it was so painful the first time I did it, and now I am in even more pain than when I had it done, so I really don't want to redo it.

The neurosurgeon I am seeing (Dr. Noel Perin) doesn't specialize in TOS he was just the doctor who found my cervical ribs. That's why I am planning on seeing a few vascular surgeons in NYC who specialize in it, but I am not sure how much surgical experience they have, so I will find all that out. The first 2 surgeons I am seeing are Dr. Thomas Riles (NYU) and Dr. Darren Schneider (Weill-Cornell).

[jkl626]

Originally Posted by parbie

I had read the information on that website before. Yes, I have had numbness in my 3rd, 4th, and 5th fingers but it is not always there, usually its pain. The neurologist specializes in the EMG test so I wasn't surprised that he would base a TOS diagnosis only off of that. He wants me to redo the EMG, but it was so painful the first time I did it, and now I am in even more pain than when I had it done, so I really don't want to redo it.

The neurosurgeon I am seeing (Dr. Noel Perin) doesn't specialize in TOS he was just the doctor who found my cervical ribs. That's why I am planning on seeing a few vascular surgeons in NYC who specialize in it, but I am not sure how much surgical experience they have, so I will find all that out. The first 2 surgeons I am seeing are Dr. Thomas Riles (NYU) and Dr. Darren Schneider (Weill-Cornell).

I think I've heard of Shneider. Theres also Dr. donohue in Boston

[Sheri_TOS]

Originally Posted by parbie

Also, do you know anything about the importance of positive EMG results to confirm a TOS diagnosis? A neurologist told me that "true" neurogenic TOS requires a positive EMG, however my EMG was negative so I'm not sure what to make of this. Some of the research I've read said EMG results aren't always a good indicator of TOS.

Parbie,

I have had a positive EMG/NCV for TOS nearly nine years ago. I remember that the MABC nerve along with several others showed significant problems. Despite this, I wouldn't worry about a positive or negative EMG/NCV result. Back then, my doctor told me that a positive result was extremely rare and it means the nerve damage is severe. I acquired TOS from a car accident but had an underlying bony abnormality. This bony abnormality is even rarer than the cervical rib (from what my doctors told me).

I am back dealing with TOS on the other side but this time I have the hypertrophic C7 transverse process. It's not considered a cervical rib because it doesn't actually touch the 1st rib. This time around, the doctors haven't ordered the EMG/NCV and I'm okay with this.

[tshadow]

JKL

I am completely unable to read all of your posts - for that I apologize ahead of time.

You may not have to meet every doctor, but depend on the stickey about doctors we've all compiled throughout the last 20 years.

Also,

A scalene test is NOT a remedy, but a DIAGNOSTIC test, to help the doctors try to figure out the enigmatic TOS.

I have TOS, then RSD, then diabetes, and now I question myasthenia gravis and a recent blow up of my arm, the ER doc is sure I have a rotator cuff injury.

So take a look at my thread on testing for TOS, I'll bump it up, if you want to read it.

God bless you.

[tshadow]

Originally Posted by jkl626

yes but he will consult with you over the phone and he supervises Dr. Annest. ther is also Dr. Brantigan there.

This is an ages old situation. I flew to Denver and saw both Brantigan and Annest. I chose Annest and the Presbyterian Hospital for my brachial plexy and scalenctomy, as they do many, many each week, and I liked Annest's professional attitude by saying "I may only save you 10% of your pain, this is risky, do you still want it?" As my RSD was growing wildly with the TOS right behind it, I said, "yes."

It is my OPINION that many moons ago Brantigan and Annest studied under Sanders, then the two tried a partnership, but were so different in mind-set that they split. Annest is one walkway away from his hospital. Brantigan suggested (rightly so) that I had more than just TOS going on, but I have had every test possible, and he said there are more neurological diseases than we can ever know.

I do feel that the computer is to blame.

[jkl626]

Originally Posted by tshadow

JKL

I am completely unable to read all of your posts - for that I apologize ahead of time.

You may not have to meet every doctor, but depend on the stickey about doctors we've all compiled throughout the last 20 years.

Also,

A scalene test is NOT a remedy, but a DIAGNOSTIC test, to help the doctors try to figure out the enigmatic TOS.

I have TOS, then RSD, then diabetes, and now I question myasthenia gravis and a recent blow up of my arm, the ER doc is sure I have a rotator cuff injury.

So take a look at my thread on testing for TOS, I'll bump it up, if you want to read it.

God bless you.

Hi T-shadow,

the title of my thread is a little tongue in cheek.I currently do have good care but it took me a long time and wanted to document it for others in my area. Ive found to find a good dr,it often takes seeing several to determine what is right for you.

Much of it refers to my search for a good pt as I have had to see several pts and chiros before I found a good pt. Unfortunately that one is very far away and am now looking for a chiropractor since my pt visits have run out. and I paying out of pocket. Unfortunately I am finding that you have to try them out before you know if they are going to help you or not. My current pt says to only give someone 2 weeks to determine if it is working or not.

As with many, I had to meet a few dr's before I got the TOS diagnosis but eventually found one of the best in the Country- and he's very close to my house- Dr. Jordan. He is cash only so I have another dr. a little more alternative. Dr.J encouraged me to see all 3 surgeons here in L.A. to get their opinions. They all do first Rib Resection. I havent yet ventured out of my city for anymore opinions but I might if I decide to pursue surgery. I am still interested in seeing a Dr. who does Scalenctomy only.

I am well aware the Scalene test is diagnostic only, i was just not convinced it was positive even though the dr. says it was.as I did not have alot of pain B4 I did it and if it helped at all it was very breif (less than an hour) . if I decide to pursue surgery,I will repeat the Scalene block.
I alos have degenrative disc disease and spinal stenosis so it makes it more complicated about which diagnostic tests to do.

I have used the stickys (thats how I found my last pt)and have done a ton of research on my own. Quite a few of the dr's on the sticky thread are now retired or no longer in practice.

Which Dr. in Denver did you like the best and did you have surgery with either one of them?

I would like to take a look at your testing thread if you want to bump it up or paste it onto my Thread that would be great!
Thanks,JKL

[parbie]

Originally Posted by jkl626

I think I've heard of Shneider. Theres also Dr. donohue in Boston

There are a few other Drs here who claim to specialize in TOS, so I will see as many as I can and if I am not comfortable with the amount of experience they have, I may go out of state, Boston is definitely one of my next options. I guess it really depends on which procedures I will be needing and if anyone here has a significant amount of experience doing them. Maybe I should start on my own thread on my surgeon search in NY for those on the east coast.

[kellysf]

Darren Sneider used to be at University of California San Francisco with Dr. Louis Messina. I believe Dr. Sneider has a great deal of TOS experience. Dr. Messina has also left UCSF and is now in Massachusetts, I think.

Kelly