[SD38]

Hi all,

first time in ages since I have posted!

I have just totally lost a massive new tread that I was gonna post out to you all, including all my details from a 2 year post surgery report.

We'll needless to say, that it was too long to repeat and type out all over again... So in short, I am stating that I am in the same situation as before as in pre surgery. Initially I had issues with A/VTOS bilaterally. I had a first rib excision on my right side which has unfortunately left me with an absolutely irritation/deliberating bruit on my left side. Post surgery I have been left with the constant sound in my ear of whooshing/ pulsing. At times it is barely audible, on others, after physical activity for instance, it's sounds as if someone is pumping air from a bicycle pump directly into my ear! My ENT consultant has since explained... After a 2 year wait for diagnoses that, it is a result of an irregular blood flow. Thus this fact is quite worrying as I explained my new symptoms of hearing this pulsing sound to my Vascular surgeon post surgery who found no connection?... I know for a fact that I did not experience these symptoms prior to surgery!

So my question to you all is... To have or not have surgery?

My personal answer would be, after recovering from a very intrusive and painful surgery that resulted in no change to my occlusion issues, is to make sure that absolutely all testing possible has been preformed before undergoing
invasive surgery which could result in the removal of vital tendons, ligaments, muscles etc!

My latest report from my Neurologist , over 2 years post op has confirmed that despite undergoing surgery for TOS my pulse still obliterates when my arm is held in abduction and external rotation.

Surgery for me now is only an option if it is a matter of life or death!

I hope this is food for thought... Don't rush to go under the knife... It doesn't always work.

xxx

[Coop42]

My experience with surgery wasn't very good either. I had it on one side, but no one's ever going to touch the other side.

[kellysf]

So sorry to hear of your difficulties. I had surgery nearly nine years ago in San Francisco. Unfortunately, I did not have a good result, either. In fact, I was made much worse by the surgery. I sincerely believe that TOS is not well understood by the medical community. They offer surgery because that's what's in their tool kit, not necessarily because it is appropriate. And the results simply are not good enough.

Take care,
Kelly

[SD38]

Originally Posted by Coop42

My experience with surgery wasn't very good either. I had it on one side, but no one's ever going to touch the other side.

Hey Coop42, it's been a long time since I've been on Neurotalk but it's good to get a response. Thanks. As far as further surgery, I'm in total agreement with you... No chance!

Hope you are well and coping/managing your symptoms?

I can't believe your Youtube clip... Best sleeping positions ( for me). Well that's me too... Exactly! I'm not alone. Also watched the flare up clip... I feel you! Keep positive. and why I wear sleeveless shirts... Spare a thought for us ladies and the issue of bras and TOS. Mine are so loose that there really is no point in wearing one! Ha. Also I have issues with my lumbar region and hips, when wearing fitted trousers, after a few hours a deep pain can set in, like a tender bruising feeling in the bones. Loose clothing is best. As well as my body going to pot so is my fashion style. It made me laugh in your clip about vacuum cupping, when you said that your wife told you to wear a different top. I've never tried vacuum cupping... Looks interesting. Does the rush of blood help with muscle spasms, tightness?

It's strange after all this time to see the face behind Coop42.

Take it easy SD38

[SD38]

Originally Posted by kellysf

So sorry to hear of your difficulties. I had surgery nearly nine years ago in San Francisco. Unfortunately, I did not have a good result, either. In fact, I was made much worse by the surgery. I sincerely believe that TOS is not well understood by the medical community. They offer surgery because that's what's in their tool kit, not necessarily because it is appropriate. And the results simply are not good enough.

Take care,
Kelly

Many thanks for your response Kelly. I find that when times get a little tough this forum really helps. Thanks for the support. Best of wishes to you.

Oh another thing that I wanted to add is why are consultants so damn quick to turn patients into pill poppers! My Neurologist thinks that I'm brave for going through these ongoing issues without resulting to taking medication. I'm not brave, just wise... I've watched my poor Dad who has been given a whole concoction of pills over time for spinal/ nerve damage issues and seen how messed up his body is now. He suffers from extreme bloating, water retention, and terrible withdrawals if he tries to lower the dosage, like sweats, shakes, palpitations etc. We'll no thanks! I'd rather endure the physical pain ( believe it or not) and attempt to slow down my activities or alter my lifestyle to try and manage my symptoms than go down that route. It's about learning what your limitations are and sticking to them. Also learning to say no to other people in the workplace if a task is too taxing or refusing to do anything that is likely to trigger TOS symptoms. It's taken me a few years now to be a bit more head strong with my employers etc but I'm getting there... I'm learning my limitations and almost managing... Almost!

Xxxx

[Coop42]

Originally Posted by SD38

Hey Coop42, it's been a long time since I've been on Neurotalk but it's good to get a response. Thanks. As far as further surgery, I'm in total agreement with you... No chance!

Hope you are well and coping/managing your symptoms?

I can't believe your Youtube clip... Best sleeping positions ( for me). Well that's me too... Exactly! I'm not alone. Also watched the flare up clip... I feel you! Keep positive. and why I wear sleeveless shirts... Spare a thought for us ladies and the issue of bras and TOS. Mine are so loose that there really is no point in wearing one! Ha. Also I have issues with my lumbar region and hips, when wearing fitted trousers, after a few hours a deep pain can set in, like a tender bruising feeling in the bones. Loose clothing is best. As well as my body going to pot so is my fashion style. It made me laugh in your clip about vacuum cupping, when you said that your wife told you to wear a different top. I've never tried vacuum cupping... Looks interesting. Does the rush of blood help with muscle spasms, tightness?

It's strange after all this time to see the face behind Coop42.

Take it easy SD38

Thanks for the feedback. I always enjoy hearing people's comments.

I'm still dealing with a flare now, so I'm feeling a little bit discouraged. It was almost calmed down then I overdid something again. I think I'll do some vacuum cupping later. To answer your question, yes, sometimes the cupping does help to relax the muscles. I think it kind of gets the blood moving through them. The only downside to it is the purple marks it leaves, but I can live with that.

[LosingHope]

I'm so sorry to hear that your surgery not only didn't help, but caused other problems.

I'm a little over a year post-op and there's no doubt in my mind that it was the right choice for me. I'm not 100% "normal," but I am much better off than I was pre-op. I am convinced that there is no 100% cure for TOS, at least not yet, but I wouldn't hesitate to have the other side done if it gets as bad as the first side did.

[brmr19]

I had surgery twice on my left side, which is not 100% but is much better than what it was. My right side, I continue to just do therapy and active isolation stretching with massage. So far so good. I see my doctor again in March for another check.

[barbwilliams]

Originally Posted by Coop42

My experience with surgery wasn't very good either. I had it on one side, but no one's ever going to touch the other side.

has anyone found something g that helps with pain 8 months after surgery? I have no pain killers left, and no one has any answers.

[Eight]

Coop, have you thought of doing the pec minor surgery? Based on your rake handle myofacial release, maybe that would help?? I know you don't ever want surgery again, but just a thought....

I am having the pec minor done on Thursday, I will let you and everyone know how it goes.