[fernie11]

Any chance someone knows of a TOS doctor for Neurological symptoms in Berlin?

[SAHOL78]

I recommend Kjetil Larsen in Norway. He has online appointments as well as regular in office appointments. Has many videos in YouTube as well. Look up **

[Gloria_D]

I read a lot of reviews and forum posts but they are fairly old. Anybody had recent appointments/surgery for neurogenic TOS with Dr. Donahue at Massachusetts General hospital and/or Dr Lum at John Hopkins hospital. I am trying to make a decision who to go to.
What additional testing do they perform except scalene nerve block if any? Are they reachable after your first appointment if you have any question/concern? Has anybody experienced unsuccessful surgery with them?
Would be good to hear from people that had surgery years ago if a rib resection created other anatomical imbalances and other symptoms.

[Jomar]

You can use our site search tool to find more recent posts about those Drs..or PTs..
https://www.neurotalk.org/search.php

[dabbo]

wow! thanks for all of the detail on this. I especially appreciate it because I've been contemplating something similar for a while now. I had given myself sort of a mental deadline, at which point I would look at talking to the various surgeons and also look into "alternative" treatments (i.e. acupuncture, chiropractors, etc).
thanks johanna

[johannakat]

Thanks to the new 12hour edit rule I'll make this one a new post....

So I went out to denver about 2.5 weeks ago. I hopped on a plane monday morning, had some pretty stressful travel (way too long lines, delayed planes and the like) that I wasn't prepared for, and arrived at Dr Brantigan's office late and in somewhat more ruffled shape than I would have liked.... They were fortunately having a light day and were able to accomodate me anyhow, which was cool.

I first met the NP who was nice (forgot her name?) but didn't do much. Dr Brantigan had supposedly read all my records before I came, but in going over my history i pointed out a few things to him that he had missed. First and foremost was Dr Jordan's ultrasound report of my right side where he clearly saw a fibrous band and an extra artery (or vein? can't remember...) because it was done with my right scalene block and Dr Brantigan had glossed over the report because he "didn't really think blocks were all that reliable"

*****
note: I have since come to some understanding of the difference between the Blocks that Dr Jordan and Dr Ahn do as compared to other docs. Dr Sanders, for instance, sticks you with the medicine and then asks if you feel better...Dr Jordan and Ahn use EMG monitoring to make sure the medicine goes exactly where they want it and and make recordings during the block. I haven't got it all figured out but I intend to ask for another explanation the next time I see Dr. Jordan)
*****


Actually, Dr Brantigan pretty much didn't like anyone's techniques for diagnosing TOS, except perhaps the SF based group doing the MRI/MRA with contrast. HE seems to rely extremely heavily on his own physical examinations and on the spiral CT scan. Doesn't like the scalene block, doesn't like Nerve Conductions Studies (like the MAC study Dr Sanders is doing), said SSEP was useless (I guess he didn't notice it was used as a rule out technique), and didn't like Dr Collins's MRI/MRA (said they were concentrating on "different things" but didn't elaborate on what those were).

He does have a very logical approach , and gave me some papers to read (the link was my favorite, and I can't find any of the others full text anywhere) that explained it. To summarize: everyone with TOS has some sort of anatomical anomoly and to fix the TOS you must locate and fix the anomoly. His papers describe 10 particular types of lower plexus anatomical varieties and another 6 or so types of upper plexus varieties. The lower plexus were things like extra ribs, cervical fibrous bands, partial cervical ribs that reduce to fibrous bands, and on and on. He was very specific as to location and type of these things which is why so many. He stated that he concentrated on bony structures.

He gave me a very thorough physical examination, but I generally don't reproduce symptoms well in an office setting. usually it is more delayed or while working on the computer, whatever. He was generally unimpressed with me there. I Explained to him the parts about being on pain meds all the time and not being able to sit in a chair to work, the pain in my back, etc and he took that all in thoughtfully.

At the end of our appt he indicated that I seemed to have a lower plexus injury on both sides and he would likely be willing to operate, but wanted to see the Spiral CT results, even though they don't usually show things like fibrous bands. So I went to get the spiral CT, and he said he'd call me in a few days. .

It then took him 2 weeks to get back to me. I guess my CT results got sent into cyberspace instead of the radiologist. After all this waiting and his ripping on everyone else's diagnostic techniques.....The CT came back completely normal.


By the time I talked to him about the results, I had also read the papers he gave me. Now I had always been confused about why my left and right sides felt so different but had the same "syndrome." I stumbled across a paragraph in the linked paper that was precisely a description of the symptoms I do get on the left and I don't get on the right. It went on to designate them as upper plexus symptoms and then to describe the rest of the normal TOS symptoms as lower plexus symptoms.

He further went on to suggest in this paper that if one had upper plexus symptoms that besdies a txiallary rib resection, he would do a supraclavicular scalenectomy at the same time.

When I talked to him about this part in his paper he said that he could revisit my upper plexus symptoms when I came back for surgery, but that he had been "unimpressed" in his physical exam and history that I had upper plexus involvement. (those aprticualr symptopms are intermittent adn I hadn't mentioned them becasue I forgot...but was having them the whole way home because of aggravation from all the testing) However, that IS the surgical course he takes for one with upper plexus syptoms.

In the end, I feel like I got some good information from him. Understanding the difference between upper and lower symptoms has been key in my decision making process. I guess If I had looked harder I might have found the info without going all the way to Denver, but in any case I have it now.

He also wrote a very nice, very detailed report including his exam notes, the history he had taken, and many thoughts and impressions. He faxed it to me the day I got my CT results.

Maybe if I lived in Denver I'd have surgery with him, but he wanted me to stay two weeks for surgery, and there is just no way I can stand to be away from my kiddos that long, so I didn't think it was likely i would choose him.

[johannakat]

The second day of my 2 day trip to Denver was to see Dr. Sanders.

I was hurting by the time I got there. I usually try to show up less medicated for Dr appts so my symtoms are not masked by the pain meds. But I was pretty flared up from being maneuvered and poked the day before. r Sanders was late gettign out of surgery, so late to our appt, but Cathy was supre nice and let me know so I could get out of those waiting room chairs and walk around. Eventually I came back and threw my self on the floor of the exam room to stretch bc I couldn't take it. The were really very nice about it.

My first impression of Dr Sanders was that he had very bad posture...looked like TOS waiting to happen. Totally hunched over...like a little old lady (except that he is actually quite tall). And, I couldn't tell if it was on purpose or a result of the OR gear, but he also had a little faux hawk thing going on with his hair

Dr Sanders also took a comprehensive history from me. I don't think he had time to read my records because he had been late coming from surgery, but I was able to point things out as I talked through my history of treatment.

HE went thorugh a series of maneuvers, and explained how he and Dr Brantigan had different approaches to TOS...Sanders is more of a soft sturctures guy and Brantigan was a bony structures guy. Dr Sanders showed me pictures of the muscle fibers of TOS sufferers vs non tos sufferers and how there was significantly more scar and connective tissue in TOS sufferers than normal folks.

I have to say Dr Sanders seems to be one of those intuitive hands on type of people. he did a scalene block right in his office. He just made me look forward, picked his landmarks and stuck the medecine in there. Now I had someone ask me if it wasn't dangerous to do a block that way, and, I *think* the answer is no, it isn't dangerous, so much as possibly inaccurate. Generally doctors now use some type of guidance (emg, fluoroscopic, whatever) to ensure that the block gets to the right place. As I just mentioned, I think Dr Sanders is the kind of doc who is very good without the guidance...

In any case, the block was remarkably successful in my mind, I felt things go away that i didn't know were even in my arm (2 numb spots) and the pain in my rhomboid went away almost completely.

so, like dr brantigan, he wasn't terribly impressed with my clinical exam, but since i was "significantly debilitated" said he would probably be willng to operate but wanted to see the results of my MAC (medial anti brachial cutaneous) nerve conduction study.

That MAC study was really really awful. needles in the back of the neck, jolts thatcould be felt all the way to my toes, and the monologue of the doctor who kept saying things like "are you sure this has only been going on for a year?" adn "I know this test isn't fun, but if you are enjoying it I have a great psychiatrist for you to see..."

Dr Sanders told me that generally they find from 1-4 abnormal things in that test if you do, in fact, have TOS. I got the detailed report of the test and I know one thing was very abnormal but I am not sure how many of the 4 i got. It was worse on the right than left, but abnormal on both sides.

After having two doctors tell me they weren't sure if I really had TOS (which was the one thing i WAS sure of when I went to denver) it was reassuring to have sustained this torture but to at least have a test that said definitively "yes" you have TOS, and quanitify how bad.

SO, I discussed in detail with Dr Sanders what operation he would want to do. He said my pec minor as OK and he didn't need to touch it (this made me happy as I didn't want it cut, and confirmed that he was picking surgeries based on ME not HIM) HE talked about how he does a very complete scalenectomy, removing all the anterior and most of the medial scalene, wraps the nerves in his favorite medical saran wrap (don't remember the name) and that IF the nerve was restng on the rib he would take the rib during the operation. He does everything supraclavicularly.

we had a long discussion about scar tissue and about why he likes to do scalenectomy alone and how he thinks failures are more common when you take ribs and scalenes at the same time. He stated that he thought it was related to bleeding after the operation. HE says he can control the bleeding very well on scalene muscles alone, but not so much on the rib removal because he needs to cut so many deeper muscles. That's why he thinks there are slightly more failures for him when you do both at the same time.

It wasn't till I was on the plane home that I read the part (mentioned above) in Dr Brantigan's paper about upper plexus symptoms and how scalenectomy was required for those. Once I read it I was pretty convinced that I would have a scalenectomy with Dr Sanders because it would be the right procedure for me.

I was so convinced that I set a date, bought plane tix, and made hotel reservations.

[johannakat]

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.

[johannakat]

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).

[olecyn]

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...