[momzpeachy]

Hi all

I saw a PT who works with the vascular surgeon. He was hoping that he could help me without having surgery. Unfortunately he can't. I was told yesterday that I need to have the TOS surgery ASAP. He saw me for an hour and a half and just moving me around put my pain scale through the roof! He can't at all. I'm really bad and he can see that it's causing me to have vertigo and also chest pain and tenderness. I am in so much pain I can't stand it! I was having trouble breathing yesterday from the tightness in the chest/armpit area. What really stinks is that nothing can relieve the pain other than surgery. He said the elec stim won't work, meds won't work, heat pad...no can do cause it causes to much pressure on the neck. Nothing other than propping my arm up with pillows at this point to keep the stress of the BP area. I need to raise the ribs up..the pullng down is BAD!

I kinda knew surgery was a BIG possibility but after hearing it ..I lost it! I got quite upset and cried a lot yesterday. I don't want this ...I didn't want ANY of this! The PT said it's an awful thing to have and it makes a MESS of everything! A long recovery is expected and I will never be back to 100% again. I will have many restrictions and have to make changes. My life is a mess! This is awful and I am scared to death! I have to have the surgery and probably early Jan at this point due to the Holidays. He said I have no other options other than becoming permanently disabled. Without the surgery ..soon I will not be able to function. I'm close to that point now. I'm out of options.

he did say that if the Dr's I was seeing a year ago would have pointed me in the RIGHT DIRECTION surgery could've probably been prevented. Nobody knew what they were doing and I didn't get the appropriate care. It's a huge mess! He said the neurologist shoudl've referred me to a TOS specialist instead if saying "nothing I can do for you"

Anyways I have to take my Daughter to the Doctor's. I would like to read about the surgery more and hear some of your stories.

Have a great day

[tshadow]

Ooooh, major baloney on being able to avoid surgery if they'd seen us earlier...I don't buy it frankly. (My opinion here folks.) I am so sick of chiros and docs talking out of their backsides...

TOS is progressive in my opinion.

TOS is a monster illness. There is no cure. Only managing your health and treatment to your very BEST result.

THANK GOD you can have a surgery to lessen your symptoms - what IF there was no surgery??? How would you feel with no options for help???

Have you ever had surgeries?

I've had cesarean, hysterectomy, breast lumpectomy(s) and reduction on both sides, and not to mention removal of a cyst on my wrist, tonsils as an adult, wisdom teeth...NONE of these were as EASY as the TOS surgery.

I went to Dr. Annest in Denver for my surgery. My pal was out eating the second or third night after surgery...

Come on, this is a possibly GREAT thing since maybe you will have more relief than you ever imagined! Recovery - reshmovery - if it were not for the meds / pharmacy mess up caused by my work comp adjuster I'd have been out of there by the third day easy...maybe shorter. My scar is about 1 inch long, under my armpit, and no one can even sit it after one year!

So I am here for you, we are here for you, this is going to be OK. Just don't be a smoker or a big drinker, and you're going to be ok. Yes, a slight FEW out of many here have had complications - but let's not go there, and you can do a lot to reduce those risks by choosing and interviewing more than one top TOS doc, off of our list. OK? OK!!!

It's going to be a GREAT 2008!!!

[Jomar]

Originally Posted by momzpeachy

Hi all


he did say that if the Dr's I was seeing a year ago would have pointed me in the RIGHT DIRECTION surgery could've probably been prevented. Nobody knew what they were doing and I didn't get the appropriate care. It's a huge mess! He said the neurologist shoudl've referred me to a TOS specialist instead if saying "nothing I can do for you"

Anyways I have to take my Dr to the Doctor's. I would like to read about the surgery more and hear some of your stories.

Have a great day

I think this part is very important for newbies to see, they need to be sure they get knowledgeable Drs as soon as possible and hopefully they might be able to avoid or head off the worst case scenarios.

I copied this before reading Tam's post LOL

I mean new to injury, so that with luck and a skilled team the progression can get stopped before it gets to that point.

[johannakat]

Momz- I am soooo happy i had surgery, and now that some of the compression is relived i can't believe i put it off for so long. it is a walk in the park compared to actually living with TOS. (i have been saying that a lot lately!)

i remember you are allergic to most pain meds, so the actual surgery will be much more difficult for you than most, you will want to explore the possibilities with your surgeon before hand, obviously. Do you know if there is anythign you can take? I can't remember if you can even do Advil....

The pain you are living with every day right now will be reduced after surgery- and the surgery itself is really not that bad at all.

(((((momz))))))

You sounds as though you are in good hands... i wish you all the best. Try not to worry too much, because it is really not all that bad.

Johanna

[jacque63]

I went to UCLA in 2000 for TOS surgery and all I got out of my surgery was a staph infection from the operating room! I had Dr. Aaron Filler, I then had to have a another surgery to irrigate all the infection out making the surgery all in vain since I got staph. I ended up being in the hospital for 23 days with follow-up home nursing for the IV vancomycin! I have since ended up a chronic pain patient and not able to work anymore! - I wouldn't wish this on anyone! I am a Happy Grandma now though! I am scheduled for my work comp trial on Wed. 12/12! Please think positive thoughts for me!
Thanks, Jacque63

[fern]

are you saying that Dr Filler never performed the TOS surgery or that it was unsuccessful due to an infection? so sorry that you are still having troubles. are you considering trying the surgery again?

[momzpeachy]

Thanks for all your replies! I am trying to fight but I'm losing steam. I am a VERY STRONG WILLED PERSON and I have a high pain tolerance but..this is NUTS! It's eating at me and I can't shake it. I really can't take the pain anymore. I really don't want to have the surgery ...honestly...I'm scared...I can't believe that's me saying that. I have been researching TOS and the surgery extensively.

I am going to see the surgeon Friday who will discuss everything with me and order the preop testing. Anyone have any idea what this will be? I have no idea what to expect! What kind of tests need to be done? I know the PT wants an MRI of my thoracic spine. I'm also not sure if the surgeon will be going under the arm or the neck or both. Anyone know how that goes?

I'm trying to learn as much as I can before hand. I thought I was prepared to hear "surgery". When the PT told me that was my only option...I cried. I can't believe it!

Johanna...you have an excellent memory! I wish I did..lol. I can't remember anything even when I write it down. Ever since those injections I had (which didn't work and caused drug induced lupus from an allergic reaction), I haven't been able to take any meds such as advil or even prescription stuff. I am allergic to everything which makes things difficult. I was given Lyrica to try but I couldn't even stand up due to real bad dizzy spells. I have inner ear nerve damage (from the TOS) which has caused me to have vertigo so Lyrica won't work. So now they are going to try different nerve meds to see what I can handle prior to the surgery because I will no doubt need them after the surgery. I really need something now though...I don'tknow how much more I can take. The pain is overwhelming and is interfering with my life. I can't sleep, can't shop, can't do the things I want to do. Christmas this year ...well..I'm just not in the mood and it hurts.

I just hope this surgery has a good outcome. Thanks again for all your kind words and thoughts.

[finz]

I understand how surgery must sound pretty scary, Momz. I've never gone under the knife for anything.

That said, this does sound like your only chance for some relief. I can't imagine how you are going through this without meds

I hope it all goes smoothly for you

[mtnmom]

I cant really tell you what to expect with your pre-op surgery appointments... When I had my surgery it was due to a blood clot in the subclavian vein so my experiance was different than most here. I was thrown into ICU and after they desolved the blood clot and a man, who became my surgeon, came in and told me what I had. My response was "I have WHAT?! I didnt know I had a thoracic outlet anything! And you have to do WHAT?!"

So anyway, becasue of the clot they had to go in through my chest. I have a four inch scar under my collar bone. But if that werent the case, it would have been nice to have the incision done through my armpit. Ask if they can do that for you.

Best of luck!

[fern]

momz- why not consider bringing someone w/U to your surgeon appt. And also if you think it would help, bring a tape recorder. And list your Qs n advance. One of them of course is which type of surgery will they do. And do they investigate before removing the rib or will they take it out either way? Who will provide your PT post-op and what is the PT regimen. Can you begin to learn the breathwork or other exercises in advance?

have you had a 2nd opinion w/another surgeon? if time is available it would be worth seeing one of the Denver ones or another expert.

good luck w/your appt.