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desperately seeking nerve imaging info
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: |
dr. scott werden is the one the best known for imaging studies. He is on th4e board of the american tos society
see a page about his imaging http://www.tosmri.com/ |
Gosh. The $$ is scary not to mention the invasive procedures!! The more doctor's opinions you get the better right?? In your shoes, I would go the distance to at least see what the imaging shows. (( What is Open MR-guided Injection? )) The more you know that better doctors can fix and many doctors don't like to recommend surgery as a fix-all.
Sorry if I didn't address your concern(?) I think I'm just feelin opinionated today :P Please keep us posted!!! :hug: |
injection mri
Hi Thursday,
I love opinions !! The needle guided imagery is so that the doctor can put the needle into the correct muscle (scalene) and inject an anesthetic or botox. 1st one for diagnosis second one for treatment sake. I understand it is really difficult to image or even feel your middle scalene so he does the guided by MRI technique to know he is in the right place. hope that answers the question ! Hell of expensive but to me....looking for help it doesn't seem like a lot....only if our dollar was better again!!! LOL love and hugs, Victoria |
:hug: Thanks for teaching me something new :D
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Vic- I wonder if talking to the doc (maybe on an initial consult visit or something) would help with the $$. maybe they can work out a discount or a payment plan or all of the above. I know that with my botox injections, my PM doc wrote off the first 4 after insurance took 10 months to deny them, and we agreed that I would pay a discounted rate going forward.
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Pudendal Nerves
Hi, I'm new to your community and may be sending my reply -- maybe not just right. However click on Title up Top and it may help you. Best of luck. I have the same problem as you-- have not found relief or help yet-- the $$$ is a big problem for me as well. I want to take this time to Thank you and the rest of the Community memembers for information they have given. Dove 1927:hug:
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Hey, Glad to see you post. I was worried about ya. I had Botox in my scalenes, bilaterally. It helped me. I did get a discounted rate of 400 - 600 a session. I had three. I got relief. I did not have any jaw popping for about two or three weeks. My therapist knows that too. I did experience eyelid twitching. A few years later I Googled Botox +scalenes and found a side effect was droopy eyelids. My doctor just poked around at my scalenes till I flinched and stuck it there. I also have cervical disc issues. I had epidurals X3 that helped me a lot. Early on I was afraid of NEEDLES. Not anymore. They have helped me too. My arms killed me, weak and exhausted by activity, I have gotten a lot of my strength back. I rebound so much better now. Big difference. I believe you can get help too. The fees do seem rather high. That don't include the doctor's visit for the order, travel expenses, although you may want to check out a Ronald McDonald House. Seems like they make money off our misery. Registration, co-pay, no pay and not enough pay. I've paid a loooooottttt. Making that money to pay for those things caused me significant pain too. double-edged sword. I would do it again, though. p:p:p I would check out Cleveland Clinic. Maybe it's close enough to venture over to America. I've traveled 3 hours to get good help, even though it caused me pain. Dr. Atasoy was worth the trip. He helped me in so many ways. Thumb, shoulder (injections didn't help but he tried), neck (referred me to ortho and ortho done current MRIs and gave a referral for the epidurals. Not to say if I were willing I could have gotten the same result earlier in my voyage. I have inquired about brachial plexus injections, as they were recommended by several doctors. Those seems to be a higher risk and not many do them. I do think you have to try something else, something more, something different. Keep trying, yes. I'm doing so much better lately. I hold my breath too, but I'm doing much better. LED and infrared lights gave me a lot of help lately. Not necessarily all the money you have should be spent on diagnostic testing. It's still not a fix. Sounds like you may have a ways to go, though. I do recall those days, but I don't want to. they were really bad. and no, life don't seem like living in a 24/7 intolerable and irretractable pain scenario. It is bad. I am sorry you have to deal with so much pain. :hug: |
From the website they seem to at least appear to know what they're talking about. I think if you can afford it, I'd definitely go for an evaluation & go from there.
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Hey
Still thinking... There are a lot of inpatient pain management facilities that are equipped to do all types of MR flourscopic imaging and injection therapies. It is like the one stop shop when you're at that point. They do counseling, diet, PT/OT, meds, and many other specialties under one group setting. With a little research, I'm sure you could find one that you like. It's not forever. I hear it is expensive but many times worth the money spent. I'm sure Cleveland Clinics in Ohio would have that in the area. If you must travel, get the most for your miles and money. :hug: |
hi
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.
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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. |
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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!!! |
imaging
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....
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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:
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