Not feeling too bad this morning, but it's only 8am...haha. Got the kids all finished for school yesterday. My oldest babysat all summer so she blew all her money on clothes....man can she shop!!!

Ok...I want to start off by saying how much I reaaly appreciate the suggestions yesterday. Some confusion though: I thought that Topomax was good for nerve pain....and it is a non narcotic....it will work right??????
OMG I hope so!!
BOtox and injections: These may be things that work, but where I live is VERY rural. When I met with the surgeron the other day I drove 2 hours to see him and I asked him about having options for treatment while waiting for surgery he said there wasn't really any. This is was I am talking about. They don't know enough about TOS to be able to provide me with any help. For me to even take Topomax, my family doc is making me have blood work and blood gases every two weeks as a precaution. When I say I am rural....I am rural. The same options are not available. Ican pretty much guess that any one else who lives in Altantic CAnada can say the same thing. This is why it is so frusterating.
Now Alison I know you are worried that I would jump at the first chance to get this darn ole surgury done....I promise you I won't. I also know that some of you are very cautious when it comes to W/C, W/C has been fair to me re: this TOS monster. Now remember I went over their heads and made my own appointment to see Dr Bethune. My family doc and I didn't tell them until a few days before I was to meet with him...I waited 8 months for that appointment, all the while continuing to see their docs getting nowhere. A few days before I left, I "reminded" them of the appointment...lol. The never fought his dx at all. Their doc said it made sense to him. HE is also a rural doc..he couldn't fight a dx from a top doc from Halifax if he wanted to because in Atlantic Canada, Halifax is the place to go. One thing about being Canadian is this: We are entitled to Health care free our taxes pay for it, so regardless if you are on W/C or not, no one should STOP you from seeing who you need to see (HAIRDRESSER!!!!) You tell your family doc who you feel you should see and they should send you. Thats what I did. I called Dr. Bethunes office and asked if he treated or dx'ed TOS and then told my doc I wanted to see him and he made the appointment. Regardless what W/C does or says, they can not take that away or make me go anywhere....W/C did say to me that we would check this guy out in Quebec, he if didn't have the qualifications to do the surgery, maybe he would know of someone who could...they will not make me go to anyone who has not got the experience doing this surgery the decision is mine and mine alone. But they are right in terms of one door may close, but it may open another. We will just keep persuing until we find someone, if not, we wait until Dr. B can do it. I want to keep all the options open. Dr. B's office said that the TOS waiting list is very long and people on that list are waiting for cancellation spots. There are also people on who have cancer waiting for these spots. He is the ONLY Thoracic cancer surgeon for the NS area, those patients obviously come first, understandably.
I know that I could go off work and maybe down the road that will have to be, but I was off work for almost a year before I went back to school and it was very depressing for me. I need to work for my mental health.

I am going to look into massage therapy if I could get some more info on that....what type? Where do they focus? What type do I ask for?? Any info would be great.
A cleaning lady would be great. I don't know that I could afford it, but maybe I will have a sit down with the family and set up some more regualr chores for helping me out. Normally the kids and hubby are great with it, but it makes me feel guilty for not doing more.

Thank you guys for everything.....You are all my saving grace!!!
Rach

Rachel, I live most of your torrid time with you as do the others on this forum. Distance and countries may seperate us but we all want to stretch out a hand, a hand to hold, an arm to steady and to guide and a shoulder to cry upon, two arms to hug. The wonderful people brought together on this forum do so much to help. They allow us to shout out for help. I for one am truely grateful.

Rachel, letting out the anger of pain and how you feel is good for you. No one expects an apology. I got told not to apologise a while back for similar. if people offer to help let them and if you can get help then rest up.

Thinking of you and well evryone in pain

Hx

Hello Rach I am glad your pain is better today. I do hope you will get your call soon for surgery. What a job getting the kids ready for school again! I'm glad you have a supportive family here and at home. I was shocked when I was told I couldn't get a referral to the Thorasic Specialist in Halifax!! I was told there is an element of TOS but it is not my main problem Mucker couldn't believe that my Doctor wouldn't refer me to see Dr.Buthune. My Physical Therapist is great and very supportive and is trying to get me approval for massage through wc. The only other thing for me may be trigger point injections. I have trouble with some meds. and side effects and after finally coming to terms with my disability and clearing my mind I realize this may be what I have to live with. Thank God for my family and all my support from this forum.

thanks for your post this a.m., rach - so glad you're feeling a bit better.

what a relief it must be to have the kidz ready for school. and with the routine of the new school year kicking in, i hope that things start to calm down somewhat for you around the house. maybe a good honest talk with your husband and kidz about the heavier chores that may be too hard for you right now would be a good idea. i'll bet they'd be glad to take those over for ya, rach - just need some direction. if the budget can stand it, getting someone in once a month or so for the really heavy stuff can lighten the load for everyone, too. something to think about, at least...

as far as massage therapy goes, i think your PT might be able to help you find someone, or with any luck they know how to do cranio-sacral and/or myofacsial release techniques on you. i think you would find those most helpful and i'm pretty sure you could google those terms to find more information, or even enter them in the search bar on this forum (or ask jo55, our resident expert on such matters!)

sorry if i confused you about the topomax. what i was trying to say, is that it will (i think) address the numbness and tingling aspects of the nerve pain sx, but not necessarily your other pain sx (e.g. muscle pain, h/a, etc.). you are right that it is a non-narcotic med. it IS confusing, it is used for migraine h/a but not tension-type h/a - so it must treat vascular sx but not muscular aches and pains, or something. i'm sure gibb could give you a link if you want more info.

listen. i totally trust you to make the right decision for YOU about which surgeon to go with, rachael. i'm not worried about that at all. just want to make sure you get the best care possible before, during and after. that is all, my canuck friend. but i know you have a very good head on your TOS shoulders and won't do anything out of desperation!

it is so sad and ironic to me that, whether we live in a rural area or in a big city, finding knowledgeable doctors, PT's and other specialists for help with our TOS can be such a huge challenge. 3 cheers for neurotalk and OBT - don't know where i would be without you guys, personally!

rachael, i am so proud of you for how you have carried yourself through all of this. we all know how hard it is to live in pain. yet look at what you've accomplished since your work injury - you've gone back to school for retraining, and are now hard at work at a new career despite a raging case of TOS and the uncertainty surrounding your surgery date. you've shown a lot of courage where many of us would simply have given up!

so i think you are entitled to your bad days. just don't forget to give yourself credit for fighting the good fight, OK? and don't forget that we are all behind you, every step of the way. remember to ask for help when you need it (always a problem for me, i forget this one all 'de time!), go easy on yourself and just keep putting one foot in front of the other.

think you've earned at least a massage this weekend. who's with me on that one?!?

alison
"Be Brave"

Rach are there therapy /massage places near you?

A close one would be a plus to save driving time and the erasing all the good they did. If you can find one that is well trained or even willing to learn and listen to what really makes you feel better vs just putting in the time.
It might take a "test drive" by you to see who you feel is a good fit for you.

Jo55...yes there are massage therapist here. Do I just tell them what is wrong with me and they will know? I like the idea of talking with my P/T and getting him to guide me.....on my to do list for tuesday!!

To everyone: You are all great and the wisdom and support is wonderful thank you

Alison: You made me teary!! Your words, support, butt kicking by times, and over all knowledge always help me. Your last post to me was very nice....I know I can count on you for your honesty and reality check. Thank you.

I have talked with the kids about their "chores", it'll cost me, b ut worth it...lol.. It would cost me anyway!!

We do have a right to care in Canada, HOWEVER I have waited a year to see a specialist sometimes and then another six mths for the next one and then another 8 mts for the next one so yes we get care, but it takes a donkeys age and it is not always what it should be. Thank Goodness you went to that surgeon educated and informed so you knew what to ask about and what to look for. Education is key. You need to be informed and aware at every intersection.

I hope that you will find your Doc B to BE everything you need if that is your choice. I have a massage that does both soft tissue, nerve release and myofacial release. I am lucky as my MT is also a certified dula and is an amazing person!! I can chat away like an idiot and she gets I just need to vent....aside from here not many get it. So that is also a huge plus for me.
BE CAREFUL with your massage therapist and make sure they start lightly and see how you do because if you don't have this approach you could end up in a massive flare and in hellishly more pain than you are now. You need to let them know your trigger areas and hopefully they come recommended by somebody and not just a walk in. The best way to get great care is ask a massage therapist who does their massage....they won't go to just anybody but a good massage therapist. I have had the best massage from my new therapist who was a massage therapist to another massage therapist.

I hope you get the best care you need. And don't sweat the small stuff. I hope that you will get your kids to do the chores write up a list and get rewards per job....ie toilet is worth more than laundry....etc.....or whatever they hate the worst....and NO ironing....it kills me to final agony!!!!

Take care and feel free to ask for ANYTHING!! We are all here for each other and that is why I love it here!

Blessings!

love and hugs,
Victoria

You are right, our health care may be free but the wait time is CRAZY!!!! I am going to talk to my P/T tuesday and he can help me with the massage therapist as he knows all my trigger areas...he has hit them at one point or another lol!!
Today has been a better day for me. The nerve pain seems to have settled down a bit. I can handle the other pains and aches I have with advil, but the nerve pain knocks me for a loop.
Question for you...the tens unit...how does that work in terms of pain and what pain does it work best on?? Would it work for me? I see my doc again in another week and thought maybe I should ask about it. I get the long weekend and to be honest I think my body really needs this rest. Been going at it pretty strong and hard lately.
I am hoping the topomax is going to help with the nerve pain....I have also read a side effect is weight loss....(OMG a twofer one deal....lol) what other kind of side effects are there? What kind of weight loss? I do find I get a tad bit confused and I take it at night night now. This week I start two pills a day and keep working up until I am at four....am I going to get dumb??? lol

Rach

Hi Rach sorry i know how you feel been there if you can i highly recommend message i was going twice a week for six weeks when i got my call for surgery. I couldn't believe that Bethune waited so long to recommend it and i couldn't believe how much it worked. She did thoracic outlet message worked on my upper back starting on the shoulder blades and neck arms and hands. She tyred another maneuver but it hurt to much so she kept it to the massage i went half an hour twice a week. How many times have you been in to see Bethune see where i live here i can see him when i wont well not that fast but i can get in to see him when he has his clinic's and i do believe that helped me because he knew how much pain i was in and he could put my face to the pain. Listen i am not sure if comp is covering the cost when you come here to see him but you would be more then welcome to crash at my place that would help financially and i would think by seeing him again and letting him know the pain you are going through it would help you get in faster. I well pm you with my info and you can let me know what ya think but for now if you can get message get it.

Thanks Mucker....Unforatunately I am 6 hours away from Dr. Bethune, so I can't get down for a visit to his clinic. I have called his office and emailed but rarely ever get a response. I am going to try the massage therapy this week. I am going to talk with my p/t for names and or suggestions. I have been reading your posts faithfully to see how you are doing and how you are feeling. I hope you will be feeling better soon.

How often did you see Dr Bethune at his clinics?

Rachael