Forgive me, my much needed rant
 

I am going to apologize ahead of time for this, I really need to do this because the only people that can understand me are thousands of miles away and on a forum....
I will start by saying how frusterated I am with the system, with TOS and oh heck..all of it. I am tired of hurting. I am tired of putting a smile on my face and saying all is fine when what I really want to do get on with my life. This past year I have gotten far worse. I hurt almost all the times now. The past month has been very rough for me. I used to only have to take my demerol two or three times a week, to every night to now I need it through the day in order to get through the day. I have begun the Topomax but they say it will be a couple weeks before I see a difference. I HATE taking pills. I HATE that it has come to the fact that I HAVE to take pain meds. As some of you may know I went to see another doc to see about finding another doc to have my surgery pushed up as Dr. Bethunes waiting list is so long. I WANT to wait for the best here but I did call Dr. Bethunes office this week and she told me that I could still be another year or TWO on the list, it goes by cancellation....how friggin discouraging is that??????? I can honestly say that I really don't think that I can't wait another year or two to have this done. Judging from how I have gone down hill the past year, where will I be in a year?? I can't sleep well....I wake up hurting....the burning pain makes me nauseous, I have no stamina anymore and I hurt like heck. I remember when I would go a week or two feeling pretty good, very little to no pain...where are those days??? ANd no one understands or wants to listen. My hubby is wonderful and is very supportive but he is the only one. The rest of my family doesn't want to hear it....people don't understand nor really care why I don't want to do something....or why I don't feel well. I am tired and worn out. This TOS kicks the snot out of you.
I'm really frusterated with the lack of medical care and knowledge of TOS. Of providing those around me with the information and tips to help me instead of the other way around. My house looks like crap because when I get home from work I hurt so bad I can't bloody do anything. I really do hate to whine...I just needed to get this off my chest when once again I wake up hurting and I look at the mountain of things needing to be done and wonder to myself if I can do it.
Sorry guys....Have a good weekend.
RAch

RachaelPlease don't say you are sorry. that is what this forum is about. We NEED to express the way we feel to people who understand. I am lucky in that we own our own business and I don't have to go to work every day, just here and there. i don't know how I would go to work each day and come home to a house that needs cleaning. I have a cleaning lady every two weeks which helps with the major stuff. Of course there is still laundry and bathrooms and kitchen cleaning. I am glad your husband understands, as does mine. I'm sorry the rest of your family doesn't. I'm lucky with that. but I do understand the pretending your ok when your'e not. Fake smile on your face when you really want to climb in bed and hide under the covers. I wish there was a TOS organization like any other medical issue. I think because it is so broad that no one cares or is interested in taking up our cause. I don't know what they would do any way. Not like raising money for diabetes or cancer research. I just think information would help so many people.

this is the place to vent so do not apologize.

I just came in my sons room. Found an old printer turned on its side on the floor and the ink came out on his cream colored rug!!! Not sure how to get it out!!

Good Luck, Linda

Linda, try Milk on that ink. Then Resolve carpet cleaner.

Rach, vent away. I think you should look at traveling to another TOS pro if at all possible - a 2 year wait?! OMG, that is too long to be suffering in the place where you are now!! :hug:

Be glad you have your husband. just 1 person to place your trust in can make all the difference in sticking this thing out. The rest of us... we have the Forum and I'm grateful for that and all of you. I got my heart smashed last night and am about as low as I ccan feel (but won't vent that here). Being able to listen to you and talk to you is such a help to me... we all help eachother in ways we can't even imagine.

our families and 'friends'... it's hard to fault them for shutting down on us...this Monster is a very scary thing to battle.

hang in there sweetie!
Anne

Thanks
 

Thank you Linda and Anne. I appreciate the words of support.

AnneI have been working slowly on the stain with water and clorox cleanup. May not be good for the rugs but it is working. It isn't the boys fault. I think I turned it on it's side to make room so I cant' yell at them for this(I'll find something else!). I have a freezer in our basement that was not closed awhile back so we had to throw everything away. I am now, between rug cleaning, cleaning the freezer out because my husband is buying food for 60 people he invited over for a barbeque! I need room for ice and extra burgers. Anyone want to come? I have a great hot tub! Pool will be about 88 degrees! If you are in the area of central NJ let me know! Beer and wine!

I am going to try to relax and stop yelling at hubby for doing this to me. He MUST help!

I think everyone has to vent. Otherwise we will go crazzzy!

Linda

:hug::hug::hug::hug:

and more hugs to all of you ....

Rachael- can anyone do trigger point injections or botox in the meantime while you wait for surgery? They were very helpful to me, though not permenant.

also- consider a cleaning person and weekly massage part of your routine- talk to your husband about how it will help your pain level each day, and work to just make it a regular part of your budget. If you can find a good massage/hellerwork/feldenkrais/PT person to work with you, you can probably reduce your daily pain quite significantly because they can help you loosen those muscles. when I was working before surgery I used to see my hellerworker for a double session each week. It was well worth the time/money for treatment as it helped me to function all the rest of the time. If you consider the options to be disability or quitting work until surgery, it might look a LOT more affordable.

Johanna

Poor Rachael...
 

honey, i know just how you feel. i think a lot of us do. and i know how grateful you are to have that husband of yours, who is so understanding and supportive - many of us (myself included) have to live alone with this nasty TOS monster -:eek:. if we had friends and colleagues once, they're long gone, same for husbands, lovers, etc. it's not that they don't love you or don't want to know what's up with you, aren't concerned about your health or anything... i think they honestly just don't "get" it. it is not in their experience to suffer this kind of pain, or to have something that a doctor cannot fix. and it scares them on a very deep level to think such a thing might even exist, truth be told. so they don't even want to know about it, and it's safer for them to pretend that it's all in our heads or something.

i honestly don't think you will have to wait as long as you think for dr. B. think of it like a waiting list at a good restaurant, rach. they always tell you it's gonna be longer than it actually is, right? that way, the people who aren't really serious about dining there will usually find someplace else to go and wander off. the ones whose hearts are set on that particular establishment are left pleasantly surprised to find their names called within 10 - 15 minutes, after being told they must wait at least 45 minutes to an hour!:rolleyes:

but he is not the only surgeon out there and if you feel you need the operation sooner than he is able to oblige you, then you do what you must to take care of yourself. but bottom line, rachael - we all need to face the fact at some point, that surgery does NOT take the TOS away! it is not a "fix" and it's not like you can go get that rib resection or scalenectomy or whatever done and bam! your sx will disappear, just like that. just doesn't work that way. i wish it did, believe me! and i guess for some people, whose cases are primarily vascular TOS, or whose dx's were extremely timely or whatever, the surgery can bring a very good result.

in most cases, however, it is just a part of the answer... and you will still need to keep searching for the right things that work for you to lessen your sx so that you can lead the life you want to afterwards. ergonomics, PT, emotional support, meds, lifestyle changes, etc., the list goes on and on...

but to address the pain and frustration you have right now, and we've talked about this before, rachael - it may be time for you to be switched over to a long-acting opioid. demerol is not a good choice for chronic pain patients, for the reasons gibb gave you in the other thread. we certainly don't want to put your internist on the defensive here or anything, but topomax is not going to address the pain issue, plain and simple. that med is for the nerve sx and/or migraine h/a.

no, what you need is a narcotic like opana ER or MS Contin, coupled with a short-acting one for breakthrough pain, like opana IR, roxicodone or dilaudid. then a muscle relaxant (not a benzo) would be good to have as well: zanaflex, flexeril, or skelaxin are good choices as far as that goes. if you are not sleeping, you might need lunesta, ambien or something like that (but i would try adding effective long- and short-acting opioid meds, a good muscle relaxant plus the topomax first - you may find that you don't need anything else-:wink:).

no apologies needed, rachael. we know how scary and how frustrating this is. TOS is a wicked taskmaster and you are right when you say there is so little understanding. you probably know more than your doctors or anyone else around you does at this point. hard to accept that, but it is true. sadly.

are you still in PT? because a good program, working both with a professional who knows how to help a TOS'er and at home, can make a big difference while you are waiting for your surgery. and, of course it goes without saying that after your surgery you will need this person as well.

i am so sorry you are having a hard time. i feel just as angry, resentful and hurt as you do sometimes and it is perfectly OK to express those feelings here. we all get discouraged, TOS is a very difficult thing to live with and can make even the smallest task seem impossible sometimes. but this is the one place you don't need to explain yourself, rachael - because most of us have been right where you are. so hard to keep smiling and some days you shouldn't! just let it out. this sucks.

keep calling that PM doc's office to see if they can't get you in earlier on a first-visit cancellation. maybe that would be an option. or perhaps your internist would be willing to consult with the PM doc and prescribe more appropriate pain meds to treat your sx in the interim - might be worth asking.

whatever you decide to do, rachael, know that you have a lot of support here. if you have any questions or anything, ask away, OK? and hope your weekend is as nice as can be, in the meantime. i sure know how you feel-:(

alison
"Be Brave"

Everyone said such good things.

I think many of us have made adjustments to find as many ways as we can to make jobs and tasks as easy as possible.

Maybe we can make a list of changes we have made to make work or household chores easier.??

Delegate those pesky tasks as best you can. Kids can start to help at even a young age on simple chores.

We need to take extra time to recoup after those uses that really set us into flares and pain. Relaxation and self care.

Posture and body use awareness - { I know you are all getting sick of me saying this:D- but every little bit has to help}

Question- how often do you check yours when you are hurting?
do you find you might be slumped, hunched or pulled forward more when you are hurting?
kind of as a protection or to escape from the pain?/
just wondering?


I think many of us still go thru a grief process for our change of work or activity levels - our freedoms to do things like we used to do.
That process is very normal and everyone goes thru those stages at differing rates.

I agree about the massage and delegating tasks part. I worked till a month or so before surgery and went for 1hr weekly massages every week...they helped quite a bit...I was also on Neurontin (5x a day!) and it wasn't till after surgery I ended up on pain meds (that's another story)

I had family/bf help out with household chores and when something didn't get done I didn't sweat it. I adjusted my work routine best I could, fixed my workstation to be as ergonomically correct as possible (and it was still far from being 'right') and just listened to my body.

I also called the surgeons office weekly to let them know I was there and waiting...I ended up getting a last minute cancellation as they knew I was ready at a moments notice.

Hang in there... :hug:

Thanks
 

Thanks everyone. Having a rough moment. Will write a message in the am. All your thoughts and suggests are very much welcome. Thank you. Alison and Vic..thank you again for the info you have emailed me...

Good Morning
 

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 :eek: 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.:grouphug:

Hi, Rachael...
 

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...:cool:

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!:D)

sorry if i confused you about the topomax.:confused: 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!:You-Rock:

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!:eek:

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!!

Hi Rachael
 

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!!!!:eek:

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

Hey Vic
 

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.

Mucker
 

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

re tens
 

Have you tried tens at the pt??? make sure you do a trial run and they should have done that already for your pain control. I find it not so helpful. I purchased one online from the states so did not need a script but got one and then it was covered by comp. Cost 100.oo cdn. Sort of works but not really. I had vascular tos surgery but think I have since begun to believe it is both types. I am now in hellish pain with muscles and with nerves but then all are related it could be the nerves setting off the muscles.....and the still vascular issues....i digress

so as to tens it is supposed to block the nerve signal being sent to your brain abut the pain. It is said to stop the pain by blocking the signal and thereby closing the pain gate. If you want articles I can find some...been a while and sort of flared will take a while, but willing to do it no prob. just let me know.

It works really well for some and not at all for others so give er a go and see but you can sometimes rent them from your pt if they have that option buy some electrodes....they stick on and are reusable so will last a while and can be taped on if they lose sticking power!! To keep them sticky...and I used to wear the electrodes all the time all day so to keep them sticky for the next day add a few drops of water and rub it into the gel pad. If it is all absorbed then all you have to do is add a little more till it is jelly like again and put it back on the plastic pad........agian I digress

As for topamax you should find that you get used to the side effects and then you will add more and should stop with the fuzzy's they suck!!!

http://www.rxcarecanada.com/Topamax.asp?prodid=1719
try that one out.

any hoo can't see much need to take out contacts.....and then settle in for a late night movie...

WORD OF ADVICE ......STOP WORKING YOUR BUM OFF GIRL you will only do more damage to your nerves!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
just a thought!! (said with your best interest at heart....:circlelove:

enjoy the labour day weekend and remember why it is called labour day and if you don't then google it!!!

love and hugs,
Victoria:hug: