Doc question....
 

Ok Y'all - i went to see my neurosurgeon today - he told me all of the tests were normal. From what i've read tho, tests aren't always going to be abnormal. one thing he did was the Adson's Test - I turn my head to the right, my left hand is normal. Turn my head the other way- owwww - and the pulse decreases (i think). I believe he mentioned to the vascular/thoracic doctor about possible vasular TOS. is that treated anydifferently? i'm still learning. I'll leave ya'll with a quote that i really like - maybe they'll put it on my gravestone in a LONG time.
"Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways – beer in one hand, whiskey in the other, body thoroughly used up, totally worn out, and screaming “HELL YEAH, WHAT A RIDE!!!”:p

My orthorpedic described my adsons test this way- no head turning was neccessary to get these results.

right side: 12/10 on a scale of 1-10 (pulse disappears instantaneously)
left side: 8/10 on same scale. (pulse disappears quickly)

Later the neurologist confirmed that description in his office, and when he did ultrasound investigations of the area my neurologist found that my circulation was completely cut off by the time my arm was level with my shoulder. He said normally the arms should have to be straight up in the air to see that.

What other tests did your neurologist do? I think a few of the doctors have very specialized tests. At UCLA they do a MRI/MRA with contrast, and someone mentioned a circular mri that they had done in colorado? I don't rememebr what the real name was. I am bad with vocabulary.

As for different doctors and treatmnets, I think the idea is the same in both cases- there is compression, you need to find a way to release it. It becomes a matter of whats being compressed- nerves, arteries, veins, or both...I think they are treated similarly- open up thoracic cavity to reduce compression. Different precautions can be required for nerve compression vs vascular compression.

I would be interested to hear how anyone elses adsons test went...I still don't have a very good feel for how bad mine is relative to others. I am pretty bummed to continue to feel worse, not better, even with various treatments.

Talk to you all soon
Johanna


PS, I am no medical professional...jsut an engineer who reads a lot. Don't take my ramblings any more seriously than that.

I even experimented with the pulse monitor on my treadmill.
it comes off the machine on the left so that's the side where I usually clip it onto my finger.
I tried it on all my fingers and then moved my arms to various positions of out and up. Just to see what would happen.

As soon as I got my arm at about 90 degrees out from my body the thing quit pulsing and I did it many times , to confirm - the same places every time.
The sides varied a little bit as my Left is worse than the Right side.

I had bilateral TOS and lost pulse on both sides. But I have spent the last 9 months + working with a PT that specializes in TOS and when I went back to the doc my pulse had gotten stronger on both sides and was not lost with the adson's test.

It took a lot of body work but my PT was great. Still have a lot of burning pain but am having nerve release surgery tomorrow (little scared) but hoping to come out even better on the other side.

Shelley

Best of luck with the nerve release Shelley!!! Hope you get excellent results.

Keep us posted,
Anne

Hey Shelly- I am a day late to ask this, probably, but what PT were you going to? I am looking for a good one.

Johanna

Hi, I had zero pulse in right arm, Doctors said it was like having mini heart attacks in my arm and left untreated, my arm would eventually give up, and once your arm turns black... thats it. I am having so many problems since surgery, but I have a good pulse there.

Shelley - I hope your surgery went well. My PT has had me doing stretches, cardio, and light weights. I was amazed how much better i felt about myself after a good cardio workout. (not w/o side-effects tho). What did your pt have you doing? I ask because I'm trying to avoid surgery, and this seems to be an integral part of that.

Here's what I used to post all of the time:

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS to rule these out, then you might have missed an obvious tumor, etc., but it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

Hi all,

I am back from surgery and feeling better. Have apin and swelling. They just put me on a short course of steroids (yuch I hate those)

My PT is named Joyce Wilkinson. HSe is in Santa Monica. Apparently one of only 12 specially trained TOS PT's in Cali. We worked for 8 months, certainly longer than my insurance and regular doc thought it was worth it (I fought both and they continue to pay for PT one year later) She did a lot of body work manually my moving my ribs around and retraining muscles and ultrasooiund. We got back to 80-85% rotation ability. Then she moved to working with her and a trainer that works side by side with them in the PT office, private sessions. We started slow on cardio and light strengthening.

I would hurt the day I did it but the next couple days were always better and I felt stronger and able to carry my body better. My posture greatly imporved to the point where the surgeons nurse commented on my great posture and range of motion.

Joyce was a life saver for me. Here number is 310-392-8274 for those interested.

I am back at work but taking it slow and being careful. Also doing hyperbaric O2 treatments to help with nerve and wound healing. I'll try anything :-).

Tshadow...so interesting on the thyroid issues because I am Hashi's dx. But as my TOS improved my thryoid normalized to where I am off the thryoid meds. I did a lot of reading that the C8 nerve if hurt or damaged and not sending the right messages to the thryoid can be an underlying cause of Thyroid problems. I will probably always have thryoid problems now and it may have always been underlying but TOS certainly aggravated.

Hope that helps.

Glad to be back. Happy Holidays!
SHelley

TOS is confusing! My thyroid med went from 25 mgs. before TOS, to now at 100 mgs., and on the rise. It has made my thyroid enlarge also. I am post-surgery April '06.

It does seem a lot of TOSers have thyroid issues of one kind or another, though, which is why I just mention it. (Doesn't mean everyone :) )

Good thoughts for today!

Shelley,

So glad you are back! I hope this surgery works for you and you are able to see through the pain to have a great holiday.

I tried to call the number above and got a fax machine...could you perhapos have mixed a number up? I am going to try to look her up by name.

Thanks SO much. I did PT for about 3 months and it just made me feel crappy all the time so I quit. I was not convinced after reading info here that they were doing anything useful for me. They meant well, but just not the right thing. They would only work on the front, couldn't get anyone to touch my trapezius muscle which is the one which is out of control tight. I decided I wasn't doing any more PT until I got a good reccomendation from anyone.

I also don't understand why, but Dr Jordan seemd to think that not PT was nesseccary after the botox- just do exercises at home. I see him friday (if I don't get bumped again as this appt was originally scheduled for Dec 4) and am going to demand PT and possibly some disability leave from work. I just can't belive how horrible I feel.

Interesting too all the comments about thyroid. I have always been a cold sort with low-ish metabolism. It makes me think I flirt with thyroid problems even though I don't think my bloodwork shows anything out of the ordinary.


And lastly....How are you back at work today after just having surgery...? Maybe the hyperbaric O2 makes you into a superwoman...!

Shelley-
Found the number...thank you.
Johanna

back at work after surgery is probably crazy but I was bored and needed something to motivate me to move. But I am probably crazy for going back so soon. But I just started a new job in october so I felt obligated to a degree. Good thing is work is closed as of Friday through the new year so I thought I could hang in for a little while.

But I am loving the hyperbaric treatments. Making a difference. But not cheap. Helping the swelling though.

Hey I was at PT when a new TOS patient called for Joyce. Maybe it was you. Before I found Joyce, I did PT somewhere else and it made me feel crappy too. They went too quickly to trying to strengthen before getting me moving and posturally better. So I stopped that but then I found Joyce. She is amazing. She really works on your ribs which as we all know are a major contributor in TOS to some degree. She gets you moving welll before doing more. I hope she can help you.

I have to tell you just as TOS is hard to dx there are some bad thryoid docs out there too. And thryoid conditions can aggravate neuro symptoms and muscle spasms. I have a large thryoid as well as dx with Hashimotos thyroiditis. Was on meds but now off. Will likely have to go back on someday since thryoid is a slow disease. There are some great thryoid sites and books out there and easier to track your condition when you get to know the numbers and how they correlate to how you feel. You can't always treat by the numbers. But be careful of docs that treat only by the numbers for thryoid. I found a great thyroid doc (after 6 of them) in Torrance, CA that works with me on the my treatment and listens to my ideas and willing to try new things.

Talk to you all later
Shelley

SO, I swear I already replied to this thread, but it isn't here. Maybe I am losing my mind. I don't even rememerb what I said except thanks-
I called Joyce yesterday in the earlyish afternoon, I think. She wasn't too excited about my insurance (blue cross blue shield) but I made an appt to see her the morning of the 29th. I hope it works out.

How many days a week do you normally go? Just curious.

Have a great break
talk to you soon,
johanna

Yeah I was there and Joyce was working with me while Chris the trainer was speaking with you I bleieve. It was BSBC of Illinois. Chris came over and talked to Joyce and she said that they had trouble with them before. I reminded Joyce though that I had BCBS of Illinois and we had no trouble with mine.

I see her twice a week. You will need a presciption if you don't have one for PT. If you do there is a good neuro in Century City Dr. Saxton that refers folks and give s prescrips to see Joyce. I think insurance will only allow for 2 visits per week anyway.

Good luck. I'll be gone that week and won't see Joyce again until the week of the 8th because she is off the week after X-mas.

Let me know how it goes.

Littlt tip, if you like Joyce book her multiple weeks in a row, she books up quick.

That's pretty funny- If I had known, I'd have had Chris say Hi! Also reassuring to hear that your insurance works for her. How did you go about getting them to cover extra PT?

I see Dr. Jordan tomorrow...I am debating requesting being put on partial disability for a while and demanding the PT order.

If he has nothing else earth shattering to tell me I think I am going to move on to an in-network neuro. I originally went to him b/c he was supposed to be the guy to see for Botox. Since the botox doesn't seem to have done much for me...well..I don't see the point of paying his fees for analyzing further diagnostics an in network Dr can do the job well.

Dr. Saxton was already on my radar because of this site and another. With you positive comments, I gave her a call today and booked an appt for January.

So I am curious..when you work with the trainer, what types of excersizes do you do? I have been round and round with my husband b/c he thinks my back hurts all the time because I have stopped using it- meaning that I don't do much physical activity anymore. I think it is true your muscles get weak when you don't use them, but I don't think that is all of it. My neck still hurts too much to do many back exercises like sit ups or even mild pilates. I think the tight trapezius and general back spasms are all related to the nerve entrapment of the TOS...but I can't quite wrap my brain around how to explain it, especially in terms that dh will understand.

It is pretty depressing to have him lose patience with me...there is soooooo much to do with our three kids (14, 3, and 1) all my stupid appts and work. I try so hard to pull my weight but I just can't do all that I need to. It is hard enough to let your toddler follow you around screaming b/c you can't pick her up, or not get all your hours in at work in a week, or get harassed for some bill you forgot to pay, or whatever... but then to have your dh give grief about it because you aren't able to keep up with what you used to do...well, it sure sucks. He's the one who is supposed to understand.

well, anyhow there you have it- after bedtime ramblings of a woman on a few vicadins. maybe I should sign off now : )

good night everyone.



Johanna

Hey Johanna,

Sorry to hear about your husband. It does suck and I understand. My situation is not the same as yours but it's so hard to get everything done and go to all the doc appts. Eventually I pared down the docs because I was getting no where.

But I can completely relate about your husband because although I do not have kids, my husband would lose pateince too. And it would hurt me and I would not believe that it was happening but I had to learn to understand that he listens and takes care of me but has no one to vent to when he needs it. He was more losing patience with the situation than with me personally. And he needed some attention too. So I tried to learn to just listen when he needed me to listen. Not to offer any advice because he just needed a release. It helped me. But I also had to tell my husband that while I am here for him and will listen because we are partners in this that he needs to understand that I need him to listen as well and not give me advice just be there for me. I had to tell him to stop acting like a baby because it was only bringing me down.

I was not a fan of Dr. Sheldon. It was like he had attention deficit disorder and kept wanting to get onto the next thing and I still had questions. Plus he was expensive and out of network. I never tried botox. Dr. Saxton will tell you that Botox only works on 50% of the people that try it. She is great and caring and gave me the PT prescription for Joyce. I just kept going back to Dr. Saxton and she kept writing the PT prescrips and BCBS kept paying so I kept going.

Be aware though that Dr. Saxton is not a fan of Dr. Filler so I do not mention him when I see her. Dr. Filler's imaging technique may be able to help pinpoint the type of entrapment.

Joyce will help pinpoint more of the source of the area that needs work. She does alot of body work where she is manipulating things. And then she will give you exercises to work on. She also did alot of ultrasound for me. It really helped loosen the spasms. Joyce understand that she needs to get you moving before any kind of strengthening. We did not strengthing until after 9 months of PT. Now I work out with the trainer and we carefully lift weights and do cardio. The other thing that helped me turn a corner was the lyrica. It calmed down the nerves that were irritating the muscles that irriatated the nerves etc. I do not want to stay on long term but it helps.


You husband is right about not using the muscles and they get weaker and make it worse. It's a terrible circle. Joyce will help you get those muscles working again. THey do need to get strong though to support each other. AS I have read in others threads, posture is so important. COnstantly remember your posture. And muscle relaxers helped me, the plain old flexeril still works the best.

Do you know what you did to get TOS? How did it come about? Looking back I can now see what I did (heavy luggage) and too much computer work.

The other thing that has helped has been the hyperbaric treatments. There is a place here in Santa Monica that I went to. It helps the muscles get the O2 it is lacking from the spasms and helps relax them. Not a permananent fix but it all goes together.

Hang in there. I am hoping Joyce can help.

Keep me posted
Shelley

Hi Shelly,

Was your TOS a work comp claim?

I tried to see Dr. Filler for a 2nd op, but his asst. advised me that he is not a W/C doctor and I would need to be seen as a cash patient and seek reimburesment from W/C.

Thanks for your time,
Ann

more ramblings....!!!
 

Shelley- Thanks for your advice. I am waffling now for what to do. I saw Dr Jordan on friday. I totally know what you mean- some days he is really busy, and his office is run by a bunch of chickens who have clearly lost their heads. Friday my appt was missing from the books adn when I got there they weren't expecting me. I told them that sicne my originaly appt was Dec 4 and this was the first day they could reschedule me for and they'd BETTER fit me in...and they did. I was lucky because it made me the first patient after lunch. Timing is everything as he was all relaxed when he came in and talked quite thoroughly with me. Side note: He and I connect on a personal level as we are both big soccer fans. He is also the team neurologist for the US Men's national team, and I think that is just way cool. If you look his name up in the literature, you will find a few studies he did on head injuries in soccer.

The visit actually went really well...for one, as I posted on the botox thread- my pulse is back on the right side ...YAY!!! Now of course Dr Jordan attributed this to the botox alone. I know for sure that it was a combination of the botox and the chiro and the massage therapist and the hellerworker. Who has what percentage of the success? Couldn't tell you!! But I am happy to hear about progress, and I do think it is unlikely either would have done it alone.

I can't take lyrica or most muscle relaxers yet b/c my littlest just isn't ready to give up nursing. Plus she's an asthma baby, so I feel the need to give her anything I can that might help fight off a cold. On other days Dr Jordan has encouraged me to stop so I could try some other things (and quit draining my own body of essential fatty acids...), but not this last visit. That can all wait till I am done. She is my last baby. A few vicadin and a heating pad can be pretty relaxing after a day with her.

Anyhow, he agreed that the timing for PT was good and was very sympathetic and understanding regarding me needing some help to keep the rest of me in working order. Of course, he suggested his own favorite PT who works out of the office next to CAST (where Dr Ahn is). And offered that I could bring my husband in and Dr Jordan himself would teach my husband how to give me a proper stretch each evening, like after a hot shower, and that it may very well help me as much as PT.

So...Anyone gone to Kevin at west side Spine and Rehab? How do I know whether to go to him or to Joyce? I am going to have to give that some thought. Dr Jordan seemed very confident in his abilities. He definitely didn't even count PT by someone other than a TOS expert as real PT. And picked Kevin out as the guy to go to even in an PT place that does mostly all TOS.

man I am rambiling here....

ON another note, my husband has been much better since the last time I worte...we kind of had it out and I think he remembered that oh yeah, I do feel crappy, not just being lazy. It is a good point to rememebr that sometimes he needs to be listened to and let it out. He used to have lots of time to spend with his friends, but not anymore, since #3 came along.


yea still rambling. got to stop this late night stuff. haven't even had any vicadin.

Would love to talk more. I'll be in Santa Monica on friday morning for PT, PM me if you would be interested in meeting for coffee or lunch or whatever. I have an appt at 8:15, so I expect I'll be done by 10 or so if not earlier.

So I decided to stick with Joyce...what a great recomendation. Thanks.
Going to post a separate thread because I thought what she had to say was so interesting....

HI All,

Happy New Year! Glad to be home after a week of holiday travel and visiting relatives. Phew.

Ann - to answer your question, no it was not a work comp claim although in hindsight I can see how work might have contributed to it and even caused it because I had a job that had a period of very heavy computer work. So I am a cash client with Dr. Filler. I am hoping my insurance will help out since I have 2 insurances through my work and my husbands. If not I have to pay cash too and I know he is expensive. How did your first surgery go with him? Successful.

Johanna, I am so glad that you liked Joyce! Stick with her and give her time. ANd glad to hear that your husband is better. Sometimes they just need us to listen since our TOS challenge affects them too in ways we might not see. And I can see how #3 can change both your lives.

Also glad to hear that Dr. Jordan was good with his time. Maybe I got him on a day when he was distracted. And I agree that the it was a combo of all of the things you are doing. I also worked with a chiro that was helpful.

Now that we are back I would love to meet you sometime when you are in Santa Monica. Let me know when your next PT is.

I am going to look for your thread about what Joyce said.

Happy New Year
Shelley