[johannakat]

I felt Dr Ahn had an edge, technically, over everyone else. He was able to boil our discussion down to the important points. He listened to my concerns, addressed them, and gave me the tools to make the most informed decision i could make. He was able to explain with amazing clarity some of the things I had wondered talking to everyone else.

I don't think any of the surgeons I visited would be bad choices. They are all highly respected and very familiar with TOS. I am glad I saw each one of them because they all made their own positive contribution to my research.

Dr Jordan's ultrasounds and special scalene block of the right side confirmed my dx early on as well as the presence of a fibrous band and an extra artery. The botox injections that I had two times after were futher confirmation that TOS was indeed the culprit.

Dr Ahn's use of the above mentioned two tools for diagnosis of TOS is an excellent and efficient choice, because they are sound. I think it seemed abrupt to me the first time I visitied because I didn't feel like Dr Ahn/Reil really thought about me, they just were hungry for my business. In fact, I don't think that is the case, i think they just really trust Dr Jordan (as well they should because he is awesome ) He would probably be my first choice even if I didn't live in LA.

Dr Filler's neurography confirmed the aggravation of C8 on the left side, which was very helpful to me to describe and identify the pain in the back of my left shoulder. I think he has really developed something great , and I hope the reasearch can be put together to make it a more generally accepted diagnostic tool. Even though I had the impression that other doctors didn't really take the MRN seriously, I found most of these surgeons were happy to talk to me about it and what it showed. I think it supported my symptoms so well that it made good sense. However, I am not keen on his partial scalenectomy with neuroplasty procedure, it was my least favorite of the 5.

Dr Weaver- well, I guess he was my token "maybe you ought to do more PT" and frankly that sugggestion made me more sure i was ready for surgery than anything else...! Also, his lack of interest in nerve compression made me more aware how important mine was. his supraclavicular scalenectomy and rib resction would have been pick number 4, based on Dr Jordan's high marks for Dr weaver's work.

Dr Brantigan- That's where I got the paper that suggested the scalenectomy along with rib resection for upper plexus symptoms. This was a key finding for me. Also enjoyed learning about his apporach based on anatomical anomalies. He was a bit gruff and not at all modest . I was dissapointed to find that he did not know about Dr Jordan's ultrasound procedure, seemed like a gap in his TOS knowledge. I would have picked him as option 3.

Dr Sanders- Simple version of left scalene block helped me feel quite distinctly how bad my "good" arm felt. Really enjoyed his office personality, extremely genuine and personable. Also offered up the MAC study which clearly showed abnormalities on both sides. He is clearly an "hands on" type doctor. Felt a little more old fashioned in that way. I think he has something special and he was an easy second choice.

one thing i am still confused about:
I am not sure what to make of the descrepancy in statistics for scalenectomy alone. UCLA studies and Dr Ahn claim a 45-55% success rate for scalenectomy alone, and Dr Sanders claims a 70% success rate. I think for that to be real, there must be something special that Sanders does and others don't. I know he does a more complete scalenectomy than Filler, but I don't think it is more complete than what Dr Ahn does. So, I am just not sure what to make of it.

I really hope I have made the right decision. I guess for all of us, only time will tell....all of them suggested that it takes about 18 months for scar tissue to stabilize, so I guess it'll be that long before i really know if it worked.

If it does or doesn't work, I am not sure I'll ever know how much of a role the surgeon really played in it. How can we ever know? Statistics only matter to a bunch of people...for each individual it either works or doesn't.

ah, it is late and I am rambling.

PLEASE feel free to point out errors, omissions, ask questions, or whatever.

If you actually bothered to read all of my crazy ramblings, you are probably also looking for a surgeon, and I'd be happy to share any forgotten details any time.




And thanks again to everyone who shared their input with me over the past few months.


Johanna

[kjjmt51]

Originally Posted by johannakat

I felt Dr Ahn had an edge, technically, over everyone else. He was able to boil our discussion down to the important points. He listened to my concerns, addressed them, and gave me the tools to make the most informed decision i could make. He was able to explain with amazing clarity some of the things I had wondered talking to everyone else.

I don't think any of the surgeons I visited would be bad choices. They are all highly respected and very familiar with TOS. I am glad I saw each one of them because they all made their own positive contribution to my research.

Dr Jordan's ultrasounds and special scalene block of the right side confirmed my dx early on as well as the presence of a fibrous band and an extra artery. The botox injections that I had two times after were futher confirmation that TOS was indeed the culprit.

Dr Ahn's use of the above mentioned two tools for diagnosis of TOS is an excellent and efficient choice, because they are sound. I think it seemed abrupt to me the first time I visitied because I didn't feel like Dr Ahn/Reil really thought about me, they just were hungry for my business. In fact, I don't think that is the case, i think they just really trust Dr Jordan (as well they should because he is awesome ) He would probably be my first choice even if I didn't live in LA.

Dr Filler's neurography confirmed the aggravation of C8 on the left side, which was very helpful to me to describe and identify the pain in the back of my left shoulder. I think he has really developed something great , and I hope the reasearch can be put together to make it a more generally accepted diagnostic tool. Even though I had the impression that other doctors didn't really take the MRN seriously, I found most of these surgeons were happy to talk to me about it and what it showed. I think it supported my symptoms so well that it made good sense. However, I am not keen on his partial scalenectomy with neuroplasty procedure, it was my least favorite of the 5.

Dr Weaver- well, I guess he was my token "maybe you ought to do more PT" and frankly that sugggestion made me more sure i was ready for surgery than anything else...! Also, his lack of interest in nerve compression made me more aware how important mine was. his supraclavicular scalenectomy and rib resction would have been pick number 4, based on Dr Jordan's high marks for Dr weaver's work.

Dr Brantigan- That's where I got the paper that suggested the scalenectomy along with rib resection for upper plexus symptoms. This was a key finding for me. Also enjoyed learning about his apporach based on anatomical anomalies. He was a bit gruff and not at all modest . I was dissapointed to find that he did not know about Dr Jordan's ultrasound procedure, seemed like a gap in his TOS knowledge. I would have picked him as option 3.

Dr Sanders- Simple version of left scalene block helped me feel quite distinctly how bad my "good" arm felt. Really enjoyed his office personality, extremely genuine and personable. Also offered up the MAC study which clearly showed abnormalities on both sides. He is clearly an "hands on" type doctor. Felt a little more old fashioned in that way. I think he has something special and he was an easy second choice.

one thing i am still confused about:
I am not sure what to make of the descrepancy in statistics for scalenectomy alone. UCLA studies and Dr Ahn claim a 45-55% success rate for scalenectomy alone, and Dr Sanders claims a 70% success rate. I think for that to be real, there must be something special that Sanders does and others don't. I know he does a more complete scalenectomy than Filler, but I don't think it is more complete than what Dr Ahn does. So, I am just not sure what to make of it.

I really hope I have made the right decision. I guess for all of us, only time will tell....all of them suggested that it takes about 18 months for scar tissue to stabilize, so I guess it'll be that long before i really know if it worked.

If it does or doesn't work, I am not sure I'll ever know how much of a role the surgeon really played in it. How can we ever know? Statistics only matter to a bunch of people...for each individual it either works or doesn't.

ah, it is late and I am rambling.

PLEASE feel free to point out errors, omissions, ask questions, or whatever.

If you actually bothered to read all of my crazy ramblings, you are probably also looking for a surgeon, and I'd be happy to share any forgotten details any time.




And thanks again to everyone who shared their input with me over the past few months.


Johanna

Hi Johanna. I'm newly diagnosed and have had two appts with Dr Ahn who recommends PT and scalenectomy (not FRRS yet) if PT doesn't work. I've tried to search patients with surgical experiences with him in this group to no avail. I know it's been a long time since you had surgery but wonder how you felt about your outcome, etc.

Thanks
Kate

[ocgirl]

When I was recently hospitalized for 5 days I was reminded of issues of hospital bed shortages that I hadn't thought about in 7 years.

When the census of the hospital gets very high and there are scheduled surgeries in the morning the management (nursing) begins to look around for people who could be discharged that night to avoid having no empty beds for emergency admissions and beds for post operative patients.

In case on your second night in the hospital you are approached and told you are going to be discharged request/demand to see the hospital supervisor. This is the nurse who is supervising the hospital and they might be able to advocate for you if this happens. This person could also help you for other problems that were not resolved through the chain of your personal nurse, the charge nurse, manager of the floor you are on (surgical) then the house supervisor.

On the topic of scalene blocks, when Dr Jordan did my scalene block 12/00 I was referred to him by Dr Ahn (Dr Ahn was not doing them at that time)
I has only been recently that I have heard of Dr Ahn doing scalene blocks.

There are two surgeons in on your surgery. I'm assuming that the second surgeon would be his associate Dr Reil.

Is Dr Reil doing surgeries on his own or is he an understudy of Dr Ahn? Since Dr Ahn comes from UCLA (a teaching hospital) is Dr Reil going to be assisting Dr Ahn or is he going to be gaining rib resection and scalenectomy experience by doing most of your surgery with Dr Ahn teaching & advising?

Sorry to be a pain for you. As a nurse I am used to critical thinking and I want to make sure that Dr Ahn's hands are doing the surgery and not Dr Reil's hands with Dr Ahn directing and advising.

[dawn3063]

Johanna,
What a great thread and so informative...
Something like this would have been so helpful prior to my Surgeries...
I hope that people that are contemplating surgery will take a long hard look at your thread... As long term results will most likely stay with them for life...
Many Hugs and Best Wishes for a Successful outcome tomorrow...

Dawn

[Jomar]

http://en.wikipedia.org/wiki/List_of..._abbreviations

the list/chart on the link is huge and detailed

[colleen]

I called Dr. Kline's (LSU) office today in my search for someone who has a clue. His office told me that he has retired, but they are referring TOS patients to Dr. Daniel Kim (Houston Baylor). Dr. Kim was trained by Dr. Kline.
http://www.bcm.edu/neurosurgery/?PMID=7782

This was a great relief to find someone who had been trained in TOS. I meet with him next week. Hopefully this information will be helpful to others.

[colleen]

Originally Posted by colleen

I called Dr. Kline's (LSU) office today in my search for someone who has a clue. His office told me that he has retired, but they are referring TOS patients to Dr. Daniel Kim (Houston Baylor). Dr. Kim was trained by Dr. Kline.
http://www.bcm.edu/neurosurgery/?PMID=7782

This was a great relief to find someone who had been trained in TOS. I meet with him next week. Hopefully this information will be helpful to others.

Well, I thought I'd follow up since I posted Dr. Kim as another Houston doctor.

Things I liked:

• He clearly had experience with TOS, although I'm not sure I'd consider him a TOS expert.
• He definately worked with Dr. Kline doing the post-surgical TOS follow-up studies.
• Provided surgical outcome expectations - 60% feel some improvement, 5% feel they shouldn't have had the surgery.
• Said if I had surgery it would be a joint surgery between him and a vascular surgeon & referred me to see a surgeon he has worked with before.

Things I didn't like:

• My appt was scheduled for 9am. I didn't see him till 11:30.
• Rushed appointment - didn't get to ask all the questions I had.
• Said I had neurological and vascular TOS. Didn't suggest any testing to determine which was the dominant issue.
• Gave me the "if you can live with the pain...." speech.
• Never indicated if there might be risks to NOT having the surgery (annurisms? nerve damage?). I mean if my artery is being obstructed, isn't that bad? Should I suck up the reduced circulation to my arm and just deal with it? Is that good for you? Do I really have arterial TOS??? I don't even know what I have.
• Never looked at my c-spine MRI's. Said everyone has bad disks, focus on the TOS and if we need to we'll worry about the disk later.
• I asked if there was any other pt or another pt that I could go to that might help and told him I didn't think my pt knew how to treat TOS. Dr said it looked like I already tried that and it didn't work (I had 6 sessions with a PT that was doing things that I'm reading you should NOT do for TOS).
• The vascular surgeon he referred me to seemed a little wishy-washy. She wanted to redo my doppler study (sorry, but if my pulse cuts off for the first one, it's going to cut off in the 2nd.... just because it wasn't done by Baylor people doesn't mean it wasn't done ok.... I mean how likely are you to have a false-positive doppler scan where it shows your pulse was cutting off but it really wasn't???). Then after that she became more wishy-washy saying "Well, if Dr. Kim wants to do the surgery without any further testing then .... well, I'll talk to Dr. Kim and we'll call you back to schedule any further testing". ----- it's been 2 weeks... no word.

That last 2 bullets are the key ones. I had a phone conversation with Dr. Sanders yesterday. He said that the bad disk in my neck should definately be further investiagated. My MRI showed the c5-6 disk to have moderate central and right side disk protrusion and bone spurring into the right neural foramen causing moderate right foraminal compromise. Dr. Sanders said that this could be causing a good portion of the symptoms of neck/shoulder pain as well as some of the neurological symptoms of tingling in my arm. Dr Sanders also said I definately have not had enough PT and from what it sounded like, not the right kind of PT. He said that therabands shouldn't be used, that they can make the symptoms worse (my pt was using therabands).

Dr. Sanders did give me the name of a Neurologist in the North Houston Area. His name is Lee Pollack. I've seen that name somewhere, but I'm not sure where. Dr. Sanders said that he receives surgical referals from Dr. Pollack and feels that Dr. Pollack would be able to connect me with the proper therapy/treatment. Then if that doesn't help after 3-4 months, then call Dr. Sanders back again......which at that point I guess I'd be more of a surgical candidate.

I was VERY happy with the phone consultation Dr. Sanders provided. I was so upset prior to this that I was ready to hop a plane somewhere just to have someone be able to definatively tell me what is wrong with me and to what degree.

I'll follow up with a review of Dr. Pollack after I see him (unfortunately not for another month). All the doctor reviews people provided here have helped so much. I hope this can help someone else who feels like I do.... completely frustrated, confused, angry, depressed, and everwhere in between.

[Lisa48]

Just wanted to post that while I do not have TOS I do have the exact same trouble with my C4 to C7 discs. What that does mean is that it is causing the neck/shoulder pain I am having and the tingling numbness down my arm. I have tried PT, but when it gets to the point of that weird tingling, that usually suggests some nerve damage of some sort. I was referred to Dr. Kim who is a neurosurgeon by my neurologist, Dr. Nammour. I believe that when you finally make it to a neurosurgeon, it is all about surgery usually. Unless you elect to not go that route and risk severe nerve damage. I came equipped with my MRI's on disk and Dr. Kim's office had my neurologist's notes when I arrived. I think I only waited about a half hour to see Dr. Kim. While he was somewhat hurried in his approach, he and his associates did spend a moderate amount of time with me and my husband explaining the procedure, the expected outcome and the risks involved. Dr. Kim elected to do minimally invasive surgery where he would clean up the bone spurs and protrusions rather than perform disc replacement. I am very grateful that this is an option because disc replacement is definitely super invasive surgery and takes a longer recovery time. Dr. Kim informed me that what we are trying to accomplish from this surgery is to prevent any damage from getting worse. It will be icing on the cake to clear up the symptoms or pain or damage. But that is not to say it is not usually successful in the 90 percentiles. He hopes to buy me at least another 5 to 10 years before disc replacement is needed. I guess I will see how it goes and post after I go through the procedure next week!

Lisa

"My MRI showed the c5-6 disk to have moderate central and right side disk protrusion and bone spurring into the right neural foramen causing moderate right foraminal compromise. Dr. Sanders said that this could be causing a good portion of the symptoms of neck/shoulder pain as well as some of the neurological symptoms of tingling in my arm. Dr Sanders also said I definately have not had enough PT and from what it sounded like, not the right kind of PT. He said that therabands shouldn't be used, that they can make the symptoms worse (my pt was using therabands)."

Originally Posted by colleen

Well, I thought I'd follow up since I posted Dr. Kim as another Houston doctor.

Things I liked:

• He clearly had experience with TOS, although I'm not sure I'd consider him a TOS expert.
• He definately worked with Dr. Kline doing the post-surgical TOS follow-up studies.
• Provided surgical outcome expectations - 60% feel some improvement, 5% feel they shouldn't have had the surgery.
• Said if I had surgery it would be a joint surgery between him and a vascular surgeon & referred me to see a surgeon he has worked with before.

Things I didn't like:

• My appt was scheduled for 9am. I didn't see him till 11:30.
• Rushed appointment - didn't get to ask all the questions I had.
• Said I had neurological and vascular TOS. Didn't suggest any testing to determine which was the dominant issue.
• Gave me the "if you can live with the pain...." speech.
• Never indicated if there might be risks to NOT having the surgery (annurisms? nerve damage?). I mean if my artery is being obstructed, isn't that bad? Should I suck up the reduced circulation to my arm and just deal with it? Is that good for you? Do I really have arterial TOS??? I don't even know what I have.
• Never looked at my c-spine MRI's. Said everyone has bad disks, focus on the TOS and if we need to we'll worry about the disk later.
• I asked if there was any other pt or another pt that I could go to that might help and told him I didn't think my pt knew how to treat TOS. Dr said it looked like I already tried that and it didn't work (I had 6 sessions with a PT that was doing things that I'm reading you should NOT do for TOS).
• The vascular surgeon he referred me to seemed a little wishy-washy. She wanted to redo my doppler study (sorry, but if my pulse cuts off for the first one, it's going to cut off in the 2nd.... just because it wasn't done by Baylor people doesn't mean it wasn't done ok.... I mean how likely are you to have a false-positive doppler scan where it shows your pulse was cutting off but it really wasn't???). Then after that she became more wishy-washy saying "Well, if Dr. Kim wants to do the surgery without any further testing then .... well, I'll talk to Dr. Kim and we'll call you back to schedule any further testing". ----- it's been 2 weeks... no word.

That last 2 bullets are the key ones. I had a phone conversation with Dr. Sanders yesterday. He said that the bad disk in my neck should definately be further investiagated. My MRI showed the c5-6 disk to have moderate central and right side disk protrusion and bone spurring into the right neural foramen causing moderate right foraminal compromise. Dr. Sanders said that this could be causing a good portion of the symptoms of neck/shoulder pain as well as some of the neurological symptoms of tingling in my arm. Dr Sanders also said I definately have not had enough PT and from what it sounded like, not the right kind of PT. He said that therabands shouldn't be used, that they can make the symptoms worse (my pt was using therabands).

Dr. Sanders did give me the name of a Neurologist in the North Houston Area. His name is Lee Pollack. I've seen that name somewhere, but I'm not sure where. Dr. Sanders said that he receives surgical referals from Dr. Pollack and feels that Dr. Pollack would be able to connect me with the proper therapy/treatment. Then if that doesn't help after 3-4 months, then call Dr. Sanders back again......which at that point I guess I'd be more of a surgical candidate.

I was VERY happy with the phone consultation Dr. Sanders provided. I was so upset prior to this that I was ready to hop a plane somewhere just to have someone be able to definatively tell me what is wrong with me and to what degree.

I'll follow up with a review of Dr. Pollack after I see him (unfortunately not for another month). All the doctor reviews people provided here have helped so much. I hope this can help someone else who feels like I do.... completely frustrated, confused, angry, depressed, and everwhere in between.

[mspennyloafer]

http://www.uggen.net/mike/writing/conditions/TOS.htm

http://www.uggen.net/mike//treatment.htm
Michael Uggen, Licensed Massage Practitioner. Washington State Massage License Number MA 16912
Nationally Certified – NCBTMB
Member – AMTA


i have NOT been here but this guys website and writings are very appealing, if you're the WA (?) area..i would definitely check him out.

Not for PT, but more massage/bodywork

[lisa g]

Dr Vern Campbell
St. Michael's hospital
55 Queen St.
Suitew 505
Toronto, On
M5C1R6
MUST BE REFERRED BY PHYSICIAN