Tos ? Los Angeles
 

I have been reading posts on this site for a few weeks and finally thought I should make a personal post. I live in Los Angeles and work as an Architect, I have been recently diagnosed with "most likely TOS".
My story....18 months ago I was lifting some boxes (way to heavy) within a day my left shoulder joint was inflamed. Weeks later I went to a shoulder specialist who diagnosed Impingement and sent me for PT. The PT was great, they calmed the joint down and brought back mobility.....and then the chronic spasms, neck pain and unrelenting bi-lateral hand pain started. The PT had no idea what was happening...nor did the shoulder specialist...or the hand specialist. I eventually was at the Rheumatologist, and the Rehabilitation Specialist (who just pushed the Narcotics and I later found out didn't believe in TOS as a real diagnosis) but no one could tell me why my hands/forearms were hurting so bad. Prior to my injury I would have the same hand pain very infrequently and would take some Aleve and forget about it.
I had NCS/EMG an MRI of both shoulders and a battery of blood work. In the spring I started to have a strange throbbing in my neck at night. At first I ignored it assuming I was feeling a bit stressed. I then started to notice if I moved my head just a little it would stop. In the mean time I have been a few PT's (some a waste of time) ...the most recent was the the first in the medical community to ask me about TOS.
Recently I have been to the Vascular Surgeon (UCLA) and Orthopedist who referred me on to Dr. Sheldon Jordan in Los Angeles for Scalene Block and Botox. Dr. Jordan could not get my symtoms to appear in the office with the hands raised and open/close of the hands. He is suggesting we don't do the Scalene block but do Botox in the 3 sites (pec, trap, scalene) and go from there.
My symtoms have definitely changed over the past year. A year ago I had hand/forearm pain every day/all day, woke often in the night, stiff neck, shoulder pain, forearm pain etc. My current condition .... my new PT has taken charge of the immpingement of the shoulder joint (he feels this is a secondary condition caused by my forward posture), my posture is much improved, my back muscles are very developed (think swimmers back), left hand only has pain with left pec inflammation (now mainly brought on by the PT tissue break up), neck is still stiff with muscle spasms and pec spasms at the clavical, rt hand and forearm hurt almost every day, forearm pain is much better but not gone. The only way I describe the pain is as if someone is pulling from my finger tips to my shoulder, pulling so hard it hurts all along the way....forarm, deltoid, shoulder, traps, and neck. I now have days with LESS pain....it is the unknowing of what I did or didn't do that has caused this LESS pain day. The pain rollercoaster is mentally draining. I don't have any numbness in my arms...if it gets really bad I get some bubbles/tingles that run up and down my arm. At night I get tiny bit of numbness on my face above my left eyebrow while laying down. Generally I would say I have made about 30% improvement.

I am torn what to do next.....I have an appoint to see Super Joyce Wilkinson. (I really like the PT I am at but feel we have gone as far as we are going to go...I think he is dedicated but wonder if they are pushing me to hard on the strengthening without getting pain relief) Should I hold out to try the Botox? I don't want to mask any potential for progress at PT. I am pretty stressed about the whole idea of injecting the scalenes.

I am currently taking a lot of Aleve (6-9 per day). Not sure it does that much but I cannot function at work with any of the other meds. I do take Ultram on a super bad day. I take 4 mg Zanaflex at night. I just started on Cymbalta ...1/2 per day.

I have tried many things and still open to trying more.....just a matter of hours in the day and money. I have done two 12 week courses of Acupuncture, 3 rounds at PT, weekly trigger point/deep tissue massage (1 yr) and lots of self massage/stretches etc.

Things I am considering.....Botox, Chiropratic, leave of absence from work.
I realize my condition is not as severe as others on this site but any advice or ideas would be helpful. I have been alone in my struggle for 18 months with Dr's who didn't care or listen.

:(

Oops Spell Check- new user error
 

It appears the spell check has changed a few of my sentences....with Surgeon and forarm.
Insert Symtoms, strengthening it may make more sence.

hello and welcome.

there is an edit button. you can "fix" your post. i was trying to see where you meant for the change...but i'm not sure where.

if you need any help...let me know.

Thanks
 

I used the edit so hopefully this makes more sense now.

Just wanted to say welcome. I am not the most informed member. I was diagnosed with TOS in 1999 and had surgery in 2000. Was pain free from 2001 until recently. From what I have read recently on this site, the area of the country you are in is a great place for TOS specialists. Dr's, PT, etc. Others will post soon I'm sure. One bit of advice my dr., Dr. Togut has recently given me is to keep a journal of what I do and when symptoms occur. Other's have said they will exercise or perform a task but symptoms don't result for hours later. This may be a way to figure out what you are doing to trigger pain. I find I sleep with my arm over my head. I have to restrain the arm during the night otherwise I wake up in major pain. My pain is on the right side and I am right handed. When I perform nrmal everyday tasks like dishes, laundry, etc. I use my right arm. I am trying to change to my left. Keeping a journal, or at least being aware of what you are doing to aggravate it may help alittle. Sorry, I am not a medical one. Good luck and welcome. Linda

Have you asked your dr. if it's OK to take that much Aleve? It sounds like alot to me, but I'm not really "up" on what's OK and what's not as far as that's concerned. You might ask your dr. about Ultracet, if you can take acetominophen. That's a combination of it and Ultram and it helps me if the pain isn't too bad. You might also ask about taking a larger dose of Zanaflex at bedtime- it helps me sleep. But, you need to increase it slowly and it does make me a little groggy if I take it late at night then get up real early- I guess I'm not getting a chance to "sleep it off". I also take Elavil at bedtime.

Di- hmmm, interesting point...i feel a difference..!

PS, welcome architect.. :) I would really encourage you to take the time/action to let yourself heal and start making improvements. If you do not, your condition is likely to deteriorate. It is very likely that things you do at work or play are aggravating your condition which will make it worse over time. You MUST find a way to at least stop causing damage, and hopefully reverse what is happening to you. I think exploring new avenues is a great idea.

It is a long hard road, unfortunately. The good thing is that there are lots of people here who understand and can share their own experiences with you. Please pull up a chair and make yourself comfy :)

I thought Cymbalta only came as capsules, how do you take 1/2?

Are you taking it for pain? Does it work? Just curious....I am starting to wonder about other options besides the narcotics i am on in the hopes that someday I'll be headed back to work and want to have a clear head :)

Welcome to the forum LAarchitect. I hope you'll find some answers and the support that you are looking for.

Although I haven't tried it I've heard Botox can be very effective. Some of the others here on this site can probably tell you their personal experiences about using Botox. My TOS is the result of a whiplash injury I had in 2001, and I have been seeing a chiropractor regularly since then. Chiropractic care is good if you have any cervical spine issues, but otherwise it may not help much. Cervical x-rays will tell you if you would benefit from chiropractic care. If you can take a leave of absence, it may be a good thing-- it would give your body time to heal and give you time to focus on activities that are triggering the flares. I think a journal is a great idea.

Please know that you are no longer alone in your struggle and that many of us can relate to what you have been going through, including seeing many doctors who don't care and don't listen and getting one wrong diagnosis after another. Again, I hope you find some answers soon, and good doctors to take care of you.

Cymbalta is a capsule ....it is fun trying to pour 1/2 without loosing it all over the floor. Dr. Jordan thougtht I should start on 1/2 ....work my way up to a full one. I think this is just a trial to see if it has any effect on my pain levels.....nothing yet. In an ideal world I would make it to a drug free/pain free level. I noticed quite a few members are parents. My husband & I would like to start a family but the 9 drug free months....followed by years of lifting and carrying a small child seem almost impossible consideration at the moment.

When I went for my appoint with the hands up it was in the AM ....typcially the best time of the day for me. I tried it the other way last night but I was already in pain....didn't notice any increase in pain.

I am counting the days (30) till my 10 day vacation to see if it has any effect on my pain. Last year we were away for 2 weeks and I could really feel the difference with no work, no chores, no driving.

zanaflex
 

Hi,

just curious as to how you take 4mg of zanaflex and feel alive I can't take more than 0.5 without drooling and falling asleep anywhere no matter what I am taking!!!!

does work just can't handle full dose!!!

just curious,
Victoria

I only take the Zanaflex at night....bc otherwise I will drool. I haven't noticed it makes much diffence in daytime pain but it helps me sleep.

oh, man, halving capsules does sound like a pain!!!

what is zanaflex again?

Zanaflex
 

oh,. so i looked at my new bottle and it is generic zanaflex...duh. i didn't catch it by it's long generic name. :o

i got the 2mg pills, but i haven't found that they do a thing for me, was going to call dr j's office to see if i could take more. he called this pill the "baby pill" so i assume that meant it was minimal dosage....

i'll have to read up more carefully, i know lots of people have talked about zanaflex before.

thanks guys :)

Zanaflex helps me more than any other muscle relaxer I've ever taken- the other stuff is like candy to me. But, while I only take 2 mg. during the day, I take a BIG dose of it at bedtime along with my Elavil. You might talk to your dr. about slowly (that's the key word) increasing it.

How long does zanaflex help you? *grr* I ended up taking a second one (so 4mg total) at bedtime last night based on some of what i see others are taking (i had been taking 2mg at bedtime for a couple weeks now with no result at all) However, I didn't take my opana so i could see what the zanaflex would do on it's own. but i woke up HURTING BADLY this am. :( Like couldn't lay in bed hurting.

i saw it has a peak effectiveness at like 3-6 hours, and so i wonder if it just stops working and everytihng went back to the way it was. does anyone know, is it like a cumulative effect in the medecine? You know, taking it for several days helps more than the first couple times?

I clearly need to ask dr J more questions about it. I don't usually just take an extra pill w/o asking like that, but my back is soooo out of control after a light workout on monday. I have so much more energy than i used to thanks to the thyroid meds...but i guess it doesn't mean i can actually *DO* more :rolleyes:

i hope to get the balance right at some point.

If you find any more info on the Zanaflex let me know. I was precribed it awhile ago by another doctor...not Dr. J. I have been taking 4mg on and off for awhile. Sometimes, I wake up in the middle of the night...I did last night. About 5 hours after going to sleep aching a bit....I assumed it was left over from my terrible day at work.
I should try to cut down on the Aleve. They have tested my blood and no major organ damage thus far. Due to a long standing ankle instability problem I have been taking high doeses of Aleve for 8+ years.

Hi,

I don't take Zanaflex myself, but here is how other patients reviewed it on "Ask A Patient." Hope this helps.

http://www.askapatient.com/viewratin...&name=ZANAFLEX

My neuro told me that Zanaflex is a short-acting (sorry, don't remember the technical term) and that in order for it to do the best good I needed to take it regularly. I looked it up in my "pill book" and it said you could take 8 mg. every 6-8 hrs. as needed, up to 3 doses a day and to not exceed 36 mg. a day:eek: . My neurologist told me that for the sake of safety it was best to not go over 24 mg. a day. Now, I take 8 mg. at night about 20-45 mins. before I plan on going to bed. This is along with a high dose of Elavil. There is NO WAY I could take 8 mg. of Zanaflex during the day and expect to be able to function in any way other than laying out in the middle of the floor....I've been on this for 4 yrs. with no problems. I take 2 mg. in the morning when I get up and am able to function perfectly well. I don't take it in the afternoons though, unless I'm really in alot of pain. Also, it's best to have regular bloodwork (I go every 3 mo.) because it can cause liver injury. It can also cause low blood pressure.

hmmm, nightmares and hallucinations, weird...!