Last week I saw Dr. Agnew
Asked him if he had heard of Dr. Weaver and new him.
He said he was a very conservative surgeon with TOS.
What you wrote is what Dr. Agnew stated.
Dr. Agnew and Dr. Weaver DO NOT like removing parts of the body.
Correcting the consition is their goal.

And as Dr. Weaver suggested to you
Dr. Agnew has me on a 6 month strict PT program.
Ad if that doesn't do it
Then refine our thoughts about a conservative surgeon.

Again, I had a pectoral minor trigger injection.
Geeze Louise it huurts but well worth it.
Help for so many hours.
Does NOT take away the cervical pain, shoulder and trap pain and head aches.
As he put it, the pecs are so aggravated and on fire that the other muscles are strained trying to hold up my head and neck.

I'm so happy you saw Dr. Weaver.
Maybe we have something here for us conservative peeps.
And on the way to better health.
XXOO

Thanks for the update and what sounds to me like good news.
I agree with being conservative and glad you found a good doctor who will communicate with you.
I hope you find an excellent PT and get some of not lots of pain relief.

Also thanks to Cyndy for the update. You're so strong and been through so much, it is nice to see you here even for a minute or two.

Hope

OK, as promised...

I saw Dr. Weaver this AM.

I am on the computer without Dragon today, so I'll work at this slowly and see if I can't get it all out.

As many of you know I am a bit of a different case than Allison. I have had syptoms for about a year, a very timely diagnosis, good PT, well at least since Dec, However, Allison and I do have the esteemed Dr. Jordan in common, so our surgical referrals were from the same source...she just beat me to the first available appt

I was up front with Weaver about that fact that I was visiting several surgeons, and that I was conflicted about the fact that Ahn and Filler do it "their" way and no other way, and that I was looking for an opbjective opinion about which was right for me. (side note: yes, Filler will send people for rib resection with compelling MRN results, but it doesn't make good business sense for him to always do that....so I don't think his opinion is completely objective)

I am giving you my impressions from the best of my recollection...and it was only this AM, but my brain is wacky and my fingers are wackier...so please forgive anythign that later turns out to be glaringly wrong and know that I am not intentionally saying anything other than what it was, or trying to make anyoen look good or bad, just my layperson impressions.




1. I liked him...nice guy very conservative, as Allison mentioned.

2. No TOS welcome mat...I found his history questionaire to be totally useless for describing my symptoms, (for instance, under nerve symptoms, no box for numbness and tingling?, no body maps to describer pain or anythign else) so I added some of my own as I went along...

3. Had a really really hard time getting my story out in a way that made sense to him or his NP. she sort of asked me questions and made me start at the very beginning and we never really go to the important stuff..then at the end when she got to the box where I listed medications she was like, oh, this is something you take pain meds for? (duh?) Needed an extra hour for that I guess

3. He is definitelycirculation centric. He was very unimpressed with an inability to make my pulse go away (thanks to SuperJoyce and RobertTheWonderWorker for that, I guess ) * and then said that if I didn't have vascular compression he had a hard time beliving there was significant nerve compression unless he saw wasting of the muscle or some other extreme sounding symptom. I didn't get exactly what he thought about numbess and tingling...?

4. Surgical approach:

well...for clarity I'll point out that Filler does not take the rib (sends you to Ahn or someone else for that) cuts a portion of the middle scalene out and does neuroplasty (read: cuts way any crap connected to the nerve and surrounds it in seprafilm) to all the local major nerves. He goes in supraclavicular for almost everyone to do this part, and if you have pain in the front of the shoulder he'll also come in axillary to clear anything connected to the nerves down there.

Ahn on the other hand always takes the first rib and all but the last 4 inches of the middle and anterior scalenes with an axillary approach. in 25% of their patients they come back a year-ish later and remve the top portion of the scalenes with a supraclavicular approach bc those pesky leftovers have managed to reattach somewhere else

Weaver says he likes to go supraclavicular in the first place, says he gets a better view. He has done anterior scalene removal only and is willing but says he has gotten burned a lot doing that, and he really really hates redo's bc the scar tissue makes it much harder. So his preferred approach is to always take the rib, and to take the complete middle and anterior (i think, might have only been anterior) scalenes. Thereby going a bit further than Ahn/Reil, but taking away the 25% chance of second surgery. He also then disconnects anything attached to the nerves both at the scalenes and more distally in front of the shoulder.


4. Though Filler and Reil (Ahn's associate) were both ready to throw me down in the OR and have their way with me, Weaver suggested 3 more monthes of PT because I was experienceing some progress.

I thought this was due in some part to me not communicating correctly that I can't work anymore and I am on pain killers 80% of the time and it seemed to me like that was BAD...but when I pushed him he admitted that he almost never offers to do surgery on the first visit unless there is VERY compelling evidence that you need it and certainly if he couldn't even make my pulse go away I wasn't all that compelling. He went on to say that he knew he was very conservative, but that is just the way he is, kind of take it or leave it.

However, I kind of like his surgical approach, so I asked him another question- which was- If I go to Denver and get another opinion and it was reccommended that this surgery was right for me, would he (Dr Weaver) be willing to do it earlier than three months so that I didn't have to travel to Denver to have it done? He seemed pretty open to doing it sooner in that circumstance. He did have a checklist of caveats like making sure I understood what my real chances were, and had reasonable goals and continued with PT, etc etc.


5. Aftercare support: Unfortunately (Sorry, Alison) I didn't even have a chance to get to things like pain control, support before or after surgery, etc etc. I have to guess that surgery at a teaching hospital will be less comfy than at a private hospital, but I guess I'll be worrying about that later. I definitely didn't get the impression he was a "whole TOS" specialist, since he wasn't thoroughly on board with the neurogenic stuff... but as a surgical specialist I liked him.


He did not have any more tests that he wanted to send me for, since TOS was a "ruled out all the other stuff" diagnosis...just wanted me to go back to PT.


For me that means I'll be off to Denver now, having made the LA rounds.

talk at you all soon,
Johanna





* (Joyce and Robert are my PT and Hellerworker for those unfamiliar)

THANKS for sharing.
From several sources Dr. Weaver doesn't like doing TOS surgeries for the basic fact that they don't work (limited) with the possiblity of more problems and scarring post surgical.

I like the fact he's honest and will work on vascular issues.
Not your usual "cookie cutter" surgeon, huh?
Just goes to show that maybe he's more intelligent than the others knowing TOS surgeries and its complications, scarring and...maybe more painful in the long run without doing all the correct PT as possible.

Saunders, Annest and Brantigan run their own hospital.
Thats why TOSers get better pre and post op care.

My issue is...the Denver docs are so far away
And if something went wrong
It's traveling back and forth
Phone calls back and forth
And what hopsital would take me in case of an emergency and know what to do?

XXOO
hang in there kiddo
You are doing all the right things.

I flew from NY to Denver for both of my redo surgeries. Dr. B would not let me go home until I was functional and well enough. With the first surgery because he had to dig my nerves out of scar tissue, I had trouble finding the adequate pain control, but I wanted to go home because it was Christmas Eve. It took a few weeks and Dr. B's help, but finally the issue was resolved after he talked to my GP and assured him that it was ok to prescribe narcotics.
I still stay in touch with him and he always responds quickly to e-mails and phone calls even though my last surgery was almost 3 years ago. I would not hesistate a minute to recoomend him to someone outside the Denver area becuase of the excellent care I received after surgery.

Linda

follow up re: Dr Weaver being good as a whole TOS doc....

Dr. Weaver couldn't get my pulse to go away in either arm yesterday, but Dr. Jordan got it to go away in both arms today when I saw him today


Johanna

Do you have any clue as to the difference?
Why loss of pulse with one dr and no loss with another?

Did they do the same intensity of position or differing positions?

Do you ever test your self by doing the "stick em up" or "hands up" test?

My left goes white at 30 sec and the right at 50 sec and then both will loose coordination and elbows will start to ache- so I pretty much stop then, arms get very heavy/weak by that time too.


[EAST Test or "Hands-up" Test
The patient brings their arms up as shown with elbows slightly behind the head. The patient then opens and closes their hands slowly for 3 minutes. A positive test is indicated by pain, heaviness or profound arm weakness or numbness and tingling of the hand.


Adson or Scalene Maneuver
The examiner locates the radial pulse. The patient rotates their head toward the tested arm and lets the head tilt backwards (extends the neck) while the examiner extends the arm. A positive test is indicated by a disappearance of the pulse.


Costoclavicular Maneuver
The examiner locates the radial pulse and draws the patient�s shoulder down and back as the patient lifts their chest in an exaggerated "at attention" posture. A positive test is indicated by an absence of a pulse. This test is particularly effective in patients who complain of symptoms while wearing a back-pack or a heavy jacket.


Allen Test
The examiner flexes the patient�s elbow to 90 degrees while the shoulder is extended horizontally and rotated laterally. The patient is asked to turn their head away from the tested arm. The radial pulse is palpated and if it disappears as the patient�s head is rotated the test is considered positive.


Provocative Elevation Test
This test is used on patients who already present with symptoms. The patient sits and the examiner grasps the patient's arms as shown. The patient is passive as the shoulders are elevated forward and into full elevation. The position is held for 30 seconds or more. This activity is evidenced by increased pulse, skin color change (more pink) and increased hand temperature. Neurological signs go from numbness to pins and needles or tingling as well as some pain as blood flow to the nerve returns. Similar to what is felt after an arm "falls asleep" and circulation returns. ]

{photos of the tests show on the website}
here - http://www.nismat.org/ptcor/thoracic_outlet/

Jo- yes, Dr jordan defintely did slightly different maneuvers, moslty just holding my whole arm back more relative to the shoulder. But, Weaver was arguing that the thoracic outlet wasn't much compromised since my pulse stayed....I just mean to suggest that he didn't try very hard. I still believe he is a very good surgeon, all my reasearch suggests that, just meant to add support to my other suggestion that he is not as familiar with TOS as the average TOS doc.

I was almost relieved to have Dr J lose my pulse for me. If I can't lose it, doesn't make much sense that I still feel cruddy, right?

*sigh* just pre surgery mental ramblings, i guess....!

Johanna

I agree with "A teacher". I am 8 yrs post op and once in a while through my medical work talk to him about other patients. He always asks how I am doing. I stop by his office now and then just to chat and he often introduces me to other TOS patients if there are any in his office at the time.

He is very "connected" to all his patients not just TOS, and is very interested in how they are doing post-op. He likes to hear about how patients do because that creates a data base for sucess stories. That's important in surgery.

If you can get out to see him do it. You don't see many of his patients post here because we do very well after surgery and can get back to life, school, or work.

Many surgeons are very selective about who they do surgery on.

If they do surgery on someone who goes into surgery with a low estimated success rate; that will affect their statistics or the amount of success stories.

Blessed be the doctor who will give someone even a small chance of less pain and a better quality of life. If they take on those tough cases their numbers will be different than a doctor who only selects patients they know will have a good outcome.

OLECYN:
I understand your reluctane to have surgery so far away from home.

Remember (at least Dr Annest's patients) come a few days before surgery for p.t. and if you follow the suggested physical therapy protocal you will be staying 2-3 weeks in Denver to have physical therapy with their therapists.

By the time you are ready to go home you are close to 3 weeks post op. I felt comfortable leaving Denver as I knew I had Dr Saxton at home if I needed her.

Ocgirl