NeuroTalk Support Groups - desperately seeking nerve imaging info

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - desperately seeking nerve imaging info (https://www.neurotalk.org/thoracic-outlet-syndrome/56752-desperately-seeking-nerve-imaging-info.html)

hi guys,
been a while since I have been on. missed ya'll
I have decided to go and visit with Cyn!
I am gonna go to Dr.Collins and get his MRI and go from there! I may go to see Dr Jordan after that! I hope that this is a solution that works...
it will be 7988 for the MRI and hospital costs then travel costs after that.

We'll see when I can get in.....I hope it will be around end of June so perhaps we can set up a meeting again for when I come down!
just an idea!!!!

love and hugs to all,
Victoria:hug::hug:

Hye Vic,

I saw the guy at Nervemed.com. He did my surgery. Dr Filler.

PM me if you want more information.

Shelley

Hey Shelley,

I am am new to the forum and new to the dx of TOS. I have been lurking on the forum for the past few months, but I only just joined and I haven't had a chance to introduce myself yet. I will get to it at some point. I am seeing Gelabert at UCLA right now, and had an MRA/V with Collins. I am curious about Dr. Filler, though, and would like to know how you feel about him and his office. I couldn't see any way to contact you other than IM on your profile, and still not sure how to just send a message in this forum. Help!

Victoria,

You wanted the doctor in Santa Monica and I believe that his name is / was different than that one that you were given. I know a couple people here went to him and kept going for needle type relief because they were not going to go forward with surgery. Gosh, it was with a P or F, someone must remember this guy. This doc ONLY takes cash.

But Olecyn has a very good doc who does good imaging, I think, Dr. Jordan, doesn't he Olecyn? (PM her.)

and,

is anyone talking about Dr. Collins at UCLA who is the radiologist whose wife and daughter have TOS and he does a neurogenic imaging MRI that costs about $20K. Ins. may cover him sometimes, but in work comp they won't because no one else can "see" what he sees on his imaging, and it doesn't seem to make any difference to the surgeon. Most surgeons do their own imaging or have someone they rely on. Many wait and see what they get when they get in there.

I fear that sometimes our pain is so high we start chasing rainbows - meaning, the doctors around you who do vascular surgery and have done rib removals and scalenectomies are probably just as good as the ones here. I believe the doctor I went to in Denver (Dr. Annest) was preferable because they do the surgery all of the time there and the hospital and nurses are aware of what happens. After my surgery they think I got hit with a huge wave of fibromyalgia - I think it was RSD - it doesn't matter because what they did was hit it back with a huge wave of Fentanyl so at the LEAST I wasn't in horrific pain like I get here in the desert. These docs out here do NOT know what RSD is, or what to do, and call me opiod chasing, when in fact I am sitting in front of them with an RSD emergency (for instance) and they need to respond, fast, and they don't!!! It is very scary!

I also wonder if you would be any better with more surgery, wondering about the "scar" tissue, because quite a few of us out here in CA when we met were all progressing, in pain, and it was and is the nerves still reacting and until they heal or stop ( or are taken off-guard by meds) then they keep hurting - I'd hate for you to get another surgery and trigger the RSD to another area (new.) Remember the RSD is when the skin stays red like a sunburn and is hot ALL of the time and the pain is horrific. It can come a day or a year...thankfully, if I can hit it I can hit it with Ativan and Fentanyl I can usually push it back down, but right now the weather is changing and causing it to come out. (See other post.)

I wish you luck and be careful chasing doctors - I will PM you.

Dr. Filler is the one I'm thinking of that only takes cash I believe.

Hi WildBiogirl,

I liked Filler for the most part. Scary smart in a good way. he really knows nerves. But his bedside manner is great so dont expect a lot in that area. You can see that socially he was the kid that never fit in.

His imaging is extremely expensive. He invented it and owns the patent but it has not caught on with other docs and there must be a reason why.

He does his injections under MRI but with no anathesia. Ouch.

Overall I would say I like his surgical approach and go to him when you are absolutely ready for surgery. For injections and and non surgical stuff I would recommend Dr Jordan.

Tam is right Filler is a cash doc. He will bill your insurance but his fees are in excess of what is allowable by insurance.

Hope this helps.

Quote:

Originally Posted by Shelley (Post 655023)

Hi WildBiogirl,

it has not caught on with other docs and there must be a reason why.

Tam is right Filler is a cash doc. .

Hope this helps.

Firstly, I NEVER go to a doctor or have a procedure done until I call the number on the back of the card for my insurance(s) and get a prior authorization. Now this can be a simple fax. Usually they refuse to give a written authorization to me, but they usally WILL give something in writing straight to the doctor's office, if you can get the two connected. I have been burned waaay to many times to trust the people verbally as later they will say, (and it's in your contract), that you will contact your insurance yourself first. The treatment may not even be of the type that the insurance would cover at all! So BE CAREFUL when it comes to preauthorizations, and Dr. Filler is a great example since he ONLY takes cash, and often your own insurance won't allow payment outside of your own group designation.

Why is this important? So you don't end up with a $40,ooo bill and you're trying to minimize it and make deals...ugh! And you can't heal if you have a huge bill looming like that.

The other issue of why the other docs haven't picked
up with his imaging, I have heard around the court rooms why. I have heard others say that: "he is too expensive and isn't worth what he finds compared to other doctors MRIs. 2 - no one "see" the abnormalities that he's trying to point out - not the patients nor the doctor. 3 Many doctors prefer ONLY to work with their pet imagers, as that's what they're used to - so,...
I always wish you my best, and my best to everyone.

Have a great time with Cyn and would you girls mind calling me when you're here? Maybe fiance can drive me over to meet you. I would be delighted!!!

hi! you can also check our DR. James Collins at UCLA. That is where I had my study done. Just goole him for the info....

Hello Vic,
Dr. J's go to procedure is the stellate ganglion block performed OP with ultrasound as it shows him the locations of all compressions, spasms, blood clots and or scar tissue in "real time" to maneuver the needle perfectly. He uses the ultrasound with each block, each procedure as any other doc would be guessing the precise location.

Check in with Shelley about his needle work.

Did this help? xxoo:hug:

Quote:

Originally Posted by gibbrn (Post 389174)

Hi all,

I am looking for information on a doctor whom a new lady described in her post in Santa Monica. No doctor name was given. I have PM'd the lady but am really anxious to have the information.

My specialist suggested that if there is treatment available in the US to go and get it there!!!!!!!!! Ahhhh hello good idea eh?? (sorry I am canadian)

She has also suggested that I may have scar tissue from the original surgery causing my pain ahhhhhhhhhhhh more hello!!! so I am searching for the light at the end of the tunnel. I did find this
http://www.nervemed.com/nervedisorders.html
not sure if this is the place or if anybody else knows of it or has been to see this guy.

I am hopeful, but doubt that Canada has the imaging technology as the usa does to see nerves and what is wrong with them.....however in looking at the fee schedule I am a little daunted.

The following represents a summary of some of our most frequently ordered procedures, and their estimates costs:
Open MR-guided Injection Piriformis / Pudendal: $2900 to $3900
Open MR-guided Injection TOS or Scalene: $3500 to $5000
Open MR-guided Injection Spine: $1900 to $3250
Piriformis Surgery: $8000 to $12,000
Brachial Plexus Surgery: $15,750 to $20,000
Re-Operative Spine Surgery: $20,000 to $35,000

oh well life is not worth living like this all the time.....there has to be hope. I have to believe that or why else continue.
you guys know what I mean right?????????????
Am I off my rocker or what????

love and hugs,
Victoria:hug: