On Tuesday I finally managed to meet Dr Ahn in person. I was supposed to have the left scalene block that Dr Reil was absolutely convinced I needed. Not being in the mood for more needles, I showed up with my report of the left scalene block from Dr Sanders and hoped I could use it as my "get out of being poked" free card.

I was going to skip the appt altogether, seeing as how I had plans to go have surgery with Dr Sanders, BUT on monday afternoon (sorry for the break in time sequence here) Dr Brantigan had called with my completely normal CT results and we had talked about doing the rib removal and scalenectomy at the same time. It hadn't occurred to me until monday nght that perhaps I could run that option by Dr Ahn and see what he had to say. I should probably also point out here that I have always been pretty certain I am having a rib resection on the right side and have pretty much always intended to have that at home with Dr Ahn...it was the left side that confused me with the weird extra symptoms.

When I told Dr Ahn I was hoping to talk him out of the scalene block, he gave me a pretty good explanation of why his block was different than other docs blocks (see above in one of my earlier posts, his procedure is the same as Dr. Jordan's). I think he and Dr Jordan have given this a LOT of thought. I think that, done their way, the block is a very accurate diagnostic tool. However, given that I had had an excellent (if short term) response to Botox, and all these other diagnostic tests in the past few weeks, i didn't really need it, and he was happy to pass. So we were off to a good start...

Next, I continued on with him explaining how I had read Dr Brantigans paper and with my funny symptoms on the left i was wondering if he would consider doing the scalenectomy at the same time as the rib resection. I made it clear to him that I had done a fair bit of research but that i was asking his opinion of my conclusions (which were that I should have both procedures done).

His answer, I thought, was very impressive. Not only did he complement me for very thorough research, he explained to me how he used to follow exactly the same thought process. He gave me statistics for various combinations of procedures- 45-55% of those who got scalenectomies first came back for rib resection. 25% of those with rib resection first came back for scalenectomy second, and for 10 years he followed the same train of thought that I was using (and Dr Brantigan suggested) only to find that no matter what, he could not really predict which symptoms suggested the need for the extra scalenectomy.

He also drew me a great big picture right on the exam table paper and we had a chat about geometry. Drew it up and we looked at the pictures- if you do a scalenectomy alone, you relieve one side of a 3 sided triangle. If you remove the rib, you relieve 2 sides of a three sided triangle. For that reason, the rib resection is alomost always going to relieve more compression.


still more to tell....but I have to stop and get the little kids, but maybe I'll finish this up tonight yet.

somebody remind me

i have to go buy dr. ahn a sympathy card...

more like a sympathy book

Let's see if I can wrap this up...

In the end he said it was fine with him to do both the rib resection transaxiallary and the scalenectomy if that's what I wanted. He said I could think about it and as long as I decided before they put me to sleep on monday, he could do it for me. The caveat is that I had to understand there was a 75% chance I did not need the scalenectomy, and that as a second procedure it obviously increased the risk a bit, though not significantly.

So, it turns out that even Dr Ahn is flexible and will do a surgery based on the patient. I doubt I could have talked him into a scalenectomy alone...but I didn't try. In the process of our anatomy/geometry lesson, He gave me what sounded like some very good reasons for using two apporaches for the two surgeries. So, even though to get the scalenectomy and the rib resection at the same time you have two incisions, it seems to me that you disturb less important inner tissues by doing it that way.

I continued on to address pain control with him. I pointed out that I am currently taking a quite a bit of medecine each day. I asked how he would compensate for that after surgery. He stated that he uses alway uses a dualidid(sp?) pump and won't send you home until you can control pain with something oral. So, if you need a second night in the hospital for that you can have it. (I intend to need that second night!)

In the end, I felt really comfortable with all of the answers he had given me. I felt as though he understood my concerns, appreciated my research, and yet was one step ahead of me (and I consider myself to be a pretty well informed patient). He was able to give me a choice, and help me make an even better informed decision with his input.

I also really feel like he and Dr Jordan are doing something special with the ultrasound that Dr Jordan does and the special scalene block procedure that they use. (Although, you all know I am super fond of Dr Jordan, and I think HE in fact is the one who developed the block procedure and then taught Dr Ahn how to do it).

Iwasjust listening to my hypnotherapy tapes.

And jumped up and thought I need to put together a book
I'll hire the writer
On everyone's experiences from beginning to present just as Johanna documented.
It would give patients in our shoes a wealth of information, the docs available in their area and the tools to make an informed decision.
We can use first names and area only for privacy.
Like the forum isn't an open book, huh?

This could be the start of the non-profit organization for TOS
With all the docs informative opinions, radiologists, PT,s Do's, Chiros, Surgeons, Neuro's, physch's, etc...

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

Stay tuned for next weeks episode, cutting edge research on



Hospital Ice Cream

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.

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

I'm going to see if I can copy & merge this thread on to our Drs sticky thread somehow. so the original will be here on the main forum but also with the drs list/info.

Yeah - It worked - copied and merged onto Drs list sticky!!