[LinJane]

Unfortunately, after 6 years pain free, I have had my symptoms return. I had the rib-resection and scalenectomy in 2000. I have been off all meds since 2001 and 2 months ago I started with the pain in my neck, shoulder and right arm. I started PT this week and taking percocet again which I am not happy about. It took me a long time to get off all my other meds. It was not a pleasant experience. I am wondering if anyone else knows if this is common for this to happen. I believe the symptoms started after a very long car ride from NJ to FLA. We did it in 2 days but I did 99% of the driving and it was very stressful. On our return, slowly the symptoms came back. I have an appointment with my surgeon, Dr. Togut in 2 weeks. Just wanted some input. Thanks, LinJane

[olecyn]

I'd say ur surgery was a success.
I'd give ANYTHING to have had 6 years of pain free days
Most TOS patients I have read here have symptoms return ALMOST immeditely and continue pain meds and PT to this day.

[Sea Pines 50]

sorry we had to meet like this, though! i take it dr. t. was your surgeon 6 years ago? if so, awesome choice - i'm sure he did a great job; however, i'm thinking perhaps you only had a partial scalenectomy at that point.

unfortunately, it is NOT uncommon for TOS sx to return, even after a top doc like dr. togut performs a rib resection, as it is a progressive disorder, and rather the nature of the beast for adhesions to form and reattach where they're bound to cause trouble at some point down the line...

but that does not, necessarily mean in and of itself that you are going to need a re-do (i.e., a complete scalenectomy). i can totally relate to why your head would automatically go there (mine would, too), though, and boy, i sure hear you on the not wanting to go back on those heavy-duty pain meds thing. good for you for jumping off in the first place; i know from personal experience that is NO SMALL FEAT.

but hey, you need to address these sx you're having. my thought is, you might even do better to try a good muscle relaxant at this point, and then you might be able to do OK with just say, motrin on the analgesic front. a couple of good ones which are not mind- or mood-altering (or addictive) are zanaflex and flexeril. and don't forget the icepacks, babe!

but if you find that you do need an analgesic stronger than an OTC to take with it, there are some out there which do not contain tylenol (takes the "tylenol worry" aspect out of the equation), such as opana and of course, oxycodone (both of which come in long-acting and short-acting forms alike [although, i must say, i personally do not like the long-acting version of oxycodone - which as i'm sure you know is marketed under the brand name oxycontin]).

we had a med thread not too long ago which you might find interesting; try toying around with the search function (i think if you use the 'advanced search' aspect using ocgirl's poster name you will find the thread...).

do you have a PM doc (schwartzman is the guy, if you're looking!)? also, does your PT have a TOS protocol? there are threads on this kind of stuff which might also be very useful to you right now and may help put your mind at ease as you re-enter "TOS-land," albeit kicking and screaming...

we are here to help you get through this, and i'm sure you have a lot to teach us, too, with your experience. it's always great to hear from someone who's had such success with a TOS surgery. we don't often get to hear about a sustainable result like yours; for some reason the "success stories" seem to run off, disappear and forget all about us...

my hope for you is that these issues that are now resurfacing for you can be addressed with the right type of PT and bodywork, but if you do need to "go back under the knife," well we are here for you for all of that process as well.

you are located in a great part of the country to be afflicted with this nonsense, that is for sure! so count that among your blessings at least, my newfound friend.

what is the deal with NJ lately? you guys are cropping up all over the dang place! it's frightening!!!

hahaha

alison

[LinJane]

I appreciate your replies. I agree that it is unusual for a success story. I was shocked that it went away. It took a few years, a few surgeries and lots of meds. I am hoping this is not a major deal. I spent a long time trying to get off all the major meds. Oxycontin was one of them. I was medicated so much I don't even remember what I was on. Onfortunately, I had to be admitted to Presbyterian Medical in NYC to get off all meds. Also, I was admitted on September 10. 2001. I watched, from my room, the second plane hit the Trade Center. So, no medication, being away from my husband and children, and experiencing a terrorist attack was extremely difficult. Today I am good. I was lucky to have Dr. Togut. He's a great Doctor. Also, Dr. Schwartzman in Philly is the doctor who diagnosed me. It is very important to find the right ones. So far PT has been minimal. She seems to understand TOS and I will not allow her to do anything that I feel would cause a strain. Thank you for your responses. I really appreciate the help.

Linda

[LinJane]

One reason I have not been on the site is out of guilt. I have had 6 years of no pain and have been in contact with DiMarie over the years. But, to go online and see how everyone suffers has been difficult. I hope/pray/and wish everyone could have the pain free days that I have had. If there is any information, or help I can give, that is why I am back. I do not suffer as badly as I had. It, hopefully is just a flare up. I hope anything I can do will help. Linda

[noname]

1. Someone explain that TOS is "progressive" I don't understand. Progressive means that it inevitably will get worse...but why? If we are talking "compression" and Lin has surgery to relieve her of the compression, why should her pain free condition suddenly progress to compression again? I'd wonder whether the "progression" is that the underlying "cause" was never really resolved but only temporarily resolved. That seems harsh to say, but I don't mean to be harsh...merely trying to understand. She was pain free for 6 years without meds and without PT. So? Scar tissue develops 6 years later because of some unresolved issue is my best guess...this doesn't suddenly "progress" without a "cause." Merely MY understanding.

2. Lin: What is the PT's assessment as to the "cause" initial and return? Have you possibly returned to old habits or work actions that may have caused the original TOS compression only to find that the nerves are being compressed AGAIN from these old habits/work actions?

3. I have to think there is cause and effect and if one is rendered pain free for 6 years and TOS "returns" there is something that was not resolved that caused the TOS to begin with and that was not ultimately corrected. Posture? Muscle weaknesses because of lack of PT exercises for 6 years? I'm not making a judgment here...I'm merely offering possibilities for the return. Only YOU can asses what MAY have contributed to your pain's return.

Hope this helps. If not, flame away...everyone else does.

[LinJane]

The cause of my TOS, we believe, was from a medical procedure that was done while I was under anesthesia. It was an immediate reaction. Hospitalization in traction and alot of misdiagnosis. I had disc replacement before the TOS diagnosis. After surgery, one year later, I had become pain free. I did not have any work related incidents or anything else to have caused this. We recently drove to FL which was extremely stressfull. I drove most of the way there and back. I noticed being VERY tense in my neck and arms during the drive. My neurologist said this may have brought on a relapse. I don't know. That was why I posted. Hoping I could get some info from anyone who may have had this experience. I am VERY lucky to have had this time pain free. Also, I am not as bad as I was, or as bad as I KNOW others are. Therapist said something about a disc problem, but, I feel the same as before. I asked for an MRI but doctor said it won't show anything. Just kind of stuck and hoping. Thanks for all of your input. Linda

[ocgirl]

I remember you LinJane from years back at Braintalk.
Dr Ellis has a good explanation about the cause of tos on his website.

http://www.doctorellis.com/

[DDayMBB]

Linda... to be pain free for six yars gives me some hope as to having some sort of future ahead. Than again there are those I have seen on this and the old BT go in for surgery and after never hear the out come, so guess they have had great success. Are you going back to see Dr T ? If nothing else, personally, I would see him for trigger point injections (have somebody else drive) and when you return home take a nice hot bath to let them really take effect !!! These usually quell my trouble spots (GOOBER) for a couple of days. Best of luck & let us know how you make out.

Mark~n~Goober

[astern]

Welcome back Linda and thanks for your posts! sorry to hear that pain is returning. Is it possible that your c-riblets have grown back? This could explain 6 good years and now sx returning, noname. Or re-aggrivation of the bad disc leading to swelling leading to compression?

Our bodies are so unique.