It sounds like your BP block may be the same as the anesthetic block they do for outpatient hand surgeries. I'm very curious as to what relief (if any) you experience over the next few days.

Marc I think its the same BP Nerve Block that Dr. Jordan had talked to me about last time.

I believe my rotator cuff bursitis/tendonitis was secondary to but a result of my TOS. AC joint cortisone injections have given me significant relief (2-3 months) of much of the shoulder pain each time I've had it.

http://www.shoulderinstitute.co.za/p...ECTIONS_WM.pdf

How long are you restricted from driving?

I wonder if it can provide relief for post-op patients as well? I don't think I need it now but maybe it could have helped me with the nerve pain that lasted weeks after my left side rib resection and neurolysis.

I only got the block. This morning I was feeling a little better but I also took my pain meds last night because I couldn't sleep due to the pain. And throughout the day my pain was back to what it is was before. I am also getting a lot of shoulder pain at the front too and also at my injection site today in addition to the regular pain in my hand, arm, back of the shoulder and neck. So at this point, I can't really say if the block even helped, but I will continue to monitor my pain levels over the next few days. I think the thing about these injections is, they may also cause muscle spasms in the same areas or other ones and that just makes it even more difficult to figure out whether it was effective. That is what happened when I got an epidural to my cervical spine, I had major muscle spasms and ended up in more than before. My anesthesiologist thinks the BP block was definitely positive because I felt slight relief yesterday morning. He says he is going to recommend another one to see if I can get more relief or do a scalene block along with the BP but he doesn't seem to care whether or not we figure out the source, he is more concerned with it giving me relief. I, however, want to know the source(s) rather than getting temporary relief. Still waiting to talk to my neuro to see what he thinks. I am also finally seeing a TOS vascular surgeon next week here so I am looking forward to getting some answers then.



I don't drive, I take public transportation in NYC so I wasn't really given a restriction. However, I also don't even allow myself to drive when I am for example, in Toronto because I get sharp random pain in addition to the constant pain in my neck and shoulder and am too afraid I will crash. I couldn't use my arm/hand until 7 am although it was still numb and tingling and had gotten the block around 3:30pm the day before.

I spoke to my neurosurgeon today who ordered the BP block. Apparently the anesthesiologist just confused me since he was more focused on the more longer term relief over a few days rather than the immediate relief that would indicate the block was positive. Because I did not feel any pain while I was numb for several hours, it is supposed to mean that it worked for me. My neuro is sending me to another doctor to re-do the block specifically to the lower trunk since this other one let the medication go to all trunks.

It didn't last for me, I am in just as much pain as I was before the block by today, but for some, it can have a little longer relief. My neuro also said the scalene block is more general and wouldn't help specify how much a role the BP is playing, which is why he is not recommending that for now. Makes a lot more sense to me now :)

Have you seen the vascular surgeon yet? I would wait to see what they say and get a second opinion before retaking it.. The Scalene block is a documented diagnostic test for TOS. My TOS dr. uses it exclusively to test for TOS. All 3 Surgeons here use it as well.

Yes that's true, that's why I asked my neuro why he wasn't recommending the scalene block vs the BP, since it is usually used to diagnose TOS. He didn't say it doesn't help as well, but just that it is more general. The lower trunk BP block would specify exactly which nerves are the problem in my case. I will wait before doing it again though, I am seeing the vascular surgeon next week.

hmm thats interesting because when I asked my dr if the BP block was a diagnostic he said its never been studied and used that way so I'm curious about that too.I will ask him again next time. I know the c-5 block will tell me if the nerve in my neck (I'm not sure what nerve it is ) is causing the pain when he stimulates it. Its good you are waiting for your vascular surgeon to get a second opinion.

I think that any nerve or muscle block can be diagnostic. Because you are blocking the pain receptors and if you don't feel pain while the medication is in your system, that confirms that those nerves or muscles are the source. The BP block probably isn't used as often as the scalene block for TOS, but I guess it makes sense to use it if the BP is the suspected source of pain. My neuro said that the BP lower trunk connects to the c8 and t1 nerve roots, he thinks those nerves are being stretched over my right cervical rib to connect into my BP. I am really looking forward to see what this vascular surgeon says this is will be my first TOS specialist opinion. When are you getting the c-5 block?

Also, do you know anything about the importance of positive EMG results to confirm a TOS diagnosis? A neurologist told me that "true" neurogenic TOS requires a positive EMG, however my EMG was negative so I'm not sure what to make of this. Some of the research I've read said EMG results aren't always a good indicator of TOS.

EMG is not a positive test for TOS.Mine was abnormal for my c6 but not my TOS. I may be doing it again. Also there is a Mac test for Pec Minor involvement and an SSEP test.(I forget which nerves these are for.)The physical exam and the scalene block are the most widely accepted tests,plus what you read and KNOW are the symptoms. But there ARE NO conclusive tests. Thats what the big problem is.The fact that you have cervical Ribs are the most telling that you have TOS and is the easiest to see and correct. You just need to find the right Dr's.

Do you have numbness or tingling in your 4th or 5th finger? This is another telling sign.
Read this:http://surgery.wustl.edu/TOS_Features.aspx
This is the TOS Consortium Website and these Dr's have come to some widely accepted conclusions. Is your Dr. who is suggesting these injections have much experience with TOS. Whats his name?

I had read the information on that website before. Yes, I have had numbness in my 3rd, 4th, and 5th fingers but it is not always there, usually its pain. The neurologist specializes in the EMG test so I wasn't surprised that he would base a TOS diagnosis only off of that. He wants me to redo the EMG, but it was so painful the first time I did it, and now I am in even more pain than when I had it done, so I really don't want to redo it.

The neurosurgeon I am seeing (Dr. Noel Perin) doesn't specialize in TOS he was just the doctor who found my cervical ribs. That's why I am planning on seeing a few vascular surgeons in NYC who specialize in it, but I am not sure how much surgical experience they have, so I will find all that out. The first 2 surgeons I am seeing are Dr. Thomas Riles (NYU) and Dr. Darren Schneider (Weill-Cornell).

I think I've heard of Shneider. Theres also Dr. donohue in Boston

Parbie,

I have had a positive EMG/NCV for TOS nearly nine years ago. I remember that the MABC nerve along with several others showed significant problems. Despite this, I wouldn't worry about a positive or negative EMG/NCV result. Back then, my doctor told me that a positive result was extremely rare and it means the nerve damage is severe. I acquired TOS from a car accident but had an underlying bony abnormality. This bony abnormality is even rarer than the cervical rib (from what my doctors told me).

I am back dealing with TOS on the other side but this time I have the hypertrophic C7 transverse process. It's not considered a cervical rib because it doesn't actually touch the 1st rib. This time around, the doctors haven't ordered the EMG/NCV and I'm okay with this.

Hi
 

JKL

I am completely unable to read all of your posts - for that I apologize ahead of time.

You may not have to meet every doctor, but depend on the stickey about doctors we've all compiled throughout the last 20 years.

Also,

A scalene test is NOT a remedy, but a DIAGNOSTIC test, to help the doctors try to figure out the enigmatic TOS.

I have TOS, then RSD, then diabetes, and now I question myasthenia gravis and a recent blow up of my arm, the ER doc is sure I have a rotator cuff injury.

So take a look at my thread on testing for TOS, I'll bump it up, if you want to read it.

God bless you.

Hi T-shadow,

the title of my thread is a little tongue in cheek.I currently do have good care but it took me a long time and wanted to document it for others in my area. Ive found to find a good dr,it often takes seeing several to determine what is right for you.

Much of it refers to my search for a good pt as I have had to see several pts and chiros before I found a good pt. Unfortunately that one is very far away and am now looking for a chiropractor since my pt visits have run out. and I paying out of pocket. Unfortunately I am finding that you have to try them out before you know if they are going to help you or not. My current pt says to only give someone 2 weeks to determine if it is working or not.

As with many, I had to meet a few dr's before I got the TOS diagnosis but eventually found one of the best in the Country- and he's very close to my house- Dr. Jordan. He is cash only so I have another dr. a little more alternative. Dr.J encouraged me to see all 3 surgeons here in L.A. to get their opinions. They all do first Rib Resection. I havent yet ventured out of my city for anymore opinions but I might if I decide to pursue surgery. I am still interested in seeing a Dr. who does Scalenctomy only.

I am well aware the Scalene test is diagnostic only, i was just not convinced it was positive even though the dr. says it was.as I did not have alot of pain B4 I did it and if it helped at all it was very breif (less than an hour) . if I decide to pursue surgery,I will repeat the Scalene block.
I alos have degenrative disc disease and spinal stenosis so it makes it more complicated about which diagnostic tests to do.

I have used the stickys (thats how I found my last pt)and have done a ton of research on my own. Quite a few of the dr's on the sticky thread are now retired or no longer in practice.

Which Dr. in Denver did you like the best and did you have surgery with either one of them?

I would like to take a look at your testing thread if you want to bump it up or paste it onto my Thread that would be great!
Thanks,JKL

There are a few other Drs here who claim to specialize in TOS, so I will see as many as I can and if I am not comfortable with the amount of experience they have, I may go out of state, Boston is definitely one of my next options. I guess it really depends on which procedures I will be needing and if anyone here has a significant amount of experience doing them. Maybe I should start on my own thread on my surgeon search in NY for those on the east coast.

Darren Sneider used to be at University of California San Francisco with Dr. Louis Messina. I believe Dr. Sneider has a great deal of TOS experience. Dr. Messina has also left UCSF and is now in Massachusetts, I think.

Kelly

yes I think you should start a new thread,as mine has gone a bit astray-

Thanks for the info, feel a lot better knowing I found at least one surgeon with a lot of TOS experience here.

Trying to work
 

Well I started a small job at home today after exactly one year of not working. i drew at the drawing board for about 2 hours then started getting shoulder pain and had to take a break.I have had some flare-ups for the last couple of weeks,after doing so well for about a month. Dont konw if it is due to my new chiropracter or the new PT I tried last week in Dr. Andos office. Both did Soft Tissue Mobilization that may have flared up my symptoms.Mostly Nerve Pain in Arm and hand.
I was also moving boxes and lifting things trying to get ready for my job.

So I was very stressed about going back to work and almost lost it at the PT today since I got discouraged and have been thinking if I am not able to work then I will look into surgery again. Dr. A gave me a pep talk and some tips on streching in between . He went over all of my exercises again to make sure I am doing things right. I am tempted to cancel my chiro visit for Friday as I dont want to flare up again.

Also my Chiro suggested getiing a new EMG/NCV since mine is a year old. which I have scheduled for next week. I am considering postponing that too as I dont know what else it is going to tell me. i am much more interested in getting a SSEP and MAC test as I know my Pec Minor is a problem. Also I cant remember if the EMGNVC can make you flare -up?? Anybody know??

Hey jkl626, yes the EMG can make you flare-up. I remember when I did mine in January I was in SOOO much pain afterward for days. I was supposed to return to work after my appointment and just couldn't go back, had to take a bunch of meds and get in bed. I am also being asked to do the EMG before surgery next month, and I really want to see if I can convince the surgeon to not do it. I would hold off on it unless its something you really need right before surgery.

oh no jkl, i am so sorry. the flare up stuff is just so bad. when i did my emg, it was not painful at all. weird how we are all different. i am flared up since my pt though, which is sad to me. do not feel down. we love you

camping
 

I am going camping for a week with my family. Luckily we are staying in tent cabins with beds.
I am prepared with all of my exercise props and meds. Sierra Mountains here I come. Wish me luck!

Good luck!

Good Luck ! Have fun lots of fun with your family! You deserve it! Remember to take your favorite pillow to put your head on. Enjoy! :)

Success
 

Well the trip was pretty successful. I would have preferred a more luxurious vacation-but my husband and son like to backpack and it was beautiful and very inexpensive. It was very nice to relax and get away from the computer and the chores at home.

I had some pain mostly at night,probably because the mattress wasnt as firm as mine- but took Lunesta when I couldnt sleep. I stayed off the meds for the most part-the drive was the worst-7 hours on the way back-I took a celebrex for that which I think makes me a little nauseaus.

When I got home I put on my spinalQ brace which took the pain right away and then iced it which was hard to do while camping.

I actually managed to to sit in a canoe and row a little bit,went on a little hike,tried to fish but that hurt. I cooked and cleaned the campsite. A motor boat ride wasnt too fun-but I had a chair which helped.

i bought a special lawn chair which was great. i did my exercises every day in the outdoors.

First time in a long time that I didnt have any PT or acupuncture and not sure if it made that much of a difference. I go back to PT on Wednesday.

I still dont feel confident about going back to work,because I had alot of neck and shoulder pain when I tried-but I want to badly and need to financially.

Over the next couple of weeks my goal is to strengthen every day,start working part time (not my regular work) and continue pt once a week for a few weeks and then try to do every other as I will not be able to do the drive to see Dr. Ando once I start Full time work again.I also need to continue to find someone closer to me that I can go to.

Discouraged
 

Well after 4 months of pt with Dr. Ando and have been feeling pretty good(about 40-50 % better at rest) , my insurance ran out and I canceled my appt with him last week because it was during the space shuttle flyover and I didnt want to be driving and thought I should try to go every other week for awhile.
Well, on sunday I did my regular exercises and I developed the worst flare up I have had in a long time. We were out at a birthday party and I drank alot of wine. Nothing I take : Relafen,Flexeril seems to help. I slept on ice and finally took a sleeping pill and it is not as bad today. I dont know what caused it and so frustrated that nothing I take helps.

I have an appt next week with another chiropracter/"Yogadoctor" who does Myofacial release and comes very highly recommended by a friend of mine who is a yoga teacher. If I can find a chiro who does massage closer to home I will be happy.I am having trouble working-it just hurts too much and its not even my regular work. So i feel I have backslided a bit after all this pt work.I am also looking into a Feldenkreiss class.

I go back to Dr. A on friday and I am going to ask for Trigger pt 's and possibly medrol dose pak . I had that more than a year ago and I think it helped. I need something to enable me to work with no pain-I am also going to talk to her about the epidural Dr. J recommended to rule out once and for all that my bulging disc is not causing any of this pain. I think I'll try the Tramadol or Vicadin again-but in the past I get muscle spasms at night from them. Weird. SO TIRED OF IT!!!! NEED BETTER DRUGS!

I am sorry to hear you are having such a hard time finding more longer term relief. Keep us posted on how it goes if you see the chiro or begin Feldenkreiss. I know I asked this a while back, but have you had a recent neck MRI to check if the bulging disc is still an issue? They are supposed to usually get better on their own over a year's time. In my experience an epidural did nothing, if anything made me worse. I feel your pain about these drugs, I had real bad reactions to Tramadol a while back and Vicodin just stopped helping as I built up tolerance to it. Currently, I am on Norco and Valium and it helps me although doesn't take all the pain away and I don't think any drug will do that for me without real bad side effects. I hope you are feeling better soon!

Thanks for the support. I really dont think my disc is an issue,but who knows for sure-the mri does show it pressing on a nerve but it is over a year old. The Tramadol helped me and didnt wake me up- I took it late afternon. I feel better today and I am trying a Feldenkriess class with a PT up near me today-I talked to her on the phone and she knows about TOS, so I am hoping for a new step forward-ONWARD AND UPWARD!

Good luck jkl, I feel your pain:( Those flare ups are bad. On minute you are normal and the other minute you can go down to a flare up which is ooh so bad.
As far as I know wine or any good drink like that only makes my flareups better. Did you sit on anything soft?

what does sitting on something soft do? I got an appt with Dr. Ando tomorrow-I always feel better after!

It compresses I think.. I am progressing well but still can't sit on a soft cushioned chair or sofa. We probably go into bad posture or something. If you see Ando definitely ask him.

I had trigger pt cortisteroid injectons yestersay and am feeling relief!!! Will probably also start the medrol dose pak on Monday. Hopefully it will help me get through the next few weeks of work.

I also saw a new chiropracter(yogadoctor) he does gentle yoga streches and only gave me one to try instead of the nerve stretch against the wall which flares me up. He is all about breathing and also did myofacial release so I will try him for 4 sessions and add it to my PT to see if it can all help together. Dr. A thought at this pt I might want to think about getting the diagnostic epidural and radifrequency from Dr. J. It will take awhile to get an appt but meanwhile I will see how I do without.

thanks for all the encouraging words
jkl

How are things? Have the trigger pts lasted? Did you take the Medrol? The wall stretches were never good for me until after my ribs were removed.

Hi, thanks for asking-I could feel releif from the trigger pt's right away.I think it helps with the muscles but not as much for the nerves. She said I could get saline ones once a month and cortizone every 3-4 months. The only stubborn muscle is the subclavius or teres (cant really tell) which connects to my pinky. Dr. ando said the subclavius was impossible to get with the trigger pt's.
I did get a flare up on wednesday after PT which really sucks. He's being alot more aggressive with the soft tissue work lately. He keeps saying I am almost to 80% better which is when he will discharge me, but I'm not so sure with the flareups. I am cutting down to once every other week also because my insurance ran out and then hopefully once a month for the rest of the year.

The Prednizone (medrol) gets my heart racing a little and I cant really tell what it is doing-but I have been able to work part time,not in my regular profession. I wore my spinal Q all day yesterday and was moving around a lot and was much better. Took a long walk today on the beach and that always helps. Still considering going on Neurontin or doing the Epidural. Between Oct 20 and April 20 I need to work in my regular profession in order to keep my insurance so that will be telling to see if I can actually do it. I see the yoga doc again today-

How about you , Marc are you feeling okay after being discharged?

Symptoms Now on good side
 

So After 2 years of having symptoms only on my right side, I have started having muscle soreness in my left shoulder and tightness under that arm and tingling in arm and wrist. i thought maybe it was just from using my left hand or sleeping funny but its been 3 weeks now and it has gotten less but hurts when sleeping. when I went to PT yesterday Dr. A said that my ribs were out on my left side too and it is unusual for TOS patients to only have symptoms on one side. he also said it was a good sign???? that it was moving around. To me it is NOT A GOOD SIGN and very depressing as I was feeling somewhat better on the right side. Has this happened to others.?

So I've been sleeping on the good side now it hurts to sleep on either side, so I went to bed bath and beyond and bought a body pillow and a wedge pillow. My pt showed me how to use the body pillow and lie half on my stomach and half on my side. I am going to try to sleep on my back using the wedge pillow as it seems to feel better when I dont lay flat. I tried both last night and still had a hard time sleeping

Does anyone have any advice??

Trying a new massage therapist today-he is my feldenkriess teacher and also does Myofacial Release etc. will post on the outcome.Not cheap but close to home.

New Chapter/New Priorities
 

On Feb 20 I was diagnosed with Breast Cancer. I have a large mass on my left breast. After all the mri's and xrays on my right side, no one ever noticed or looked at my left side. I was so focused on the TOS for the past 2 years that I did not get a mammogram for 4 years. this is what is the most frustrating and makes me so mad at myself as I was so thorough with the TOS.I have a top of the line surgeon at Cedars Breast Center in L.A. and have been very impressed with them so far and am undergoing tests to see what kind of surgery and treatment I will have to have. Its going to be another long journey.

My spirits are pretty good-after the initial shock and sadness, I have MANY friends who have gone through this and lots of support.

I have decided in this case, NOT to go on the internet and NOT to go on the forums.It is just to scary to read about at this point anyway. It has been such a different experience with the diagnosis and dr's I cant even tell you-it is so routine-so common-I had a diagnosis,biopsy and a surgeon in 3 weeks!

The silver lining is that my TOS is alot better for the past few weeks. It seems like the less I go to PT (its beeen about a month),no massages just occaisional acupunture and feldenkreiss, and lidocaine /cortizone injections once a month. I do my exercises every day. Once in awhile I get a bad flare-up if I overstretch or am too stressed. when I went to see the surgeon I got a bad one 2 weeks ago.

I did ask dr. Aufiero if there might be any chance that the tumour has anything to do with the TOS ,because it might be heavy and my breasts are large. She thought it might not be out of the realm of possiblity. I think I will ask Dr. Jordan about this too when I see him again. I guess I will know after the surgery, and maybe I will end up with smaller breasts. Hah!