Post op letdown
 

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.

:grouphug: xxx

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.

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

I totally agree!
 

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? :hug:

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 :winky: SD38

Thank you!
 

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.:hug:

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!:winky:

Xxxx

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.

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.

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.

Held after surgery
 

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.

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.

Actually, I've had TOS for so many years, that I think my whole nervous system is out of whack. It's kind of hypersensitive to everything. My body really hasn't responded well to surgeries in the past.
Good luck on Thursday. I hope it goes well for you.

One of my doctors (not TOS surgeon) thinks I may have "hyperactive sympathetic nerves" from all of this. He said it is very difficult to treat. He has suggested a spinal cord stimulator but I have not seen where those have helped too many people. Has anyone else been told that about sympathetic nerves or have any insight into it?

Romans8, sorry to hear of your latest problems. What kind of symptoms does your doctor attribute to the sympathetic nervous system?

complex regional pain syndrome
 

This new TOS textbook has some discussion of complex regional pain syndrome and its connection to TOS: http://www.amazon.com/Thoracic-Outle...utlet+syndrome

Amazon allows you to search inside the book to see some of the text.

follow-up to previous CRPS post
 

There are a number of references to CRPS in the TOS book. Also, one chapter by Dr. Donahue "Complex Pain Syndrome and NTOS." And another "Postoperative Complex Regional Pain Syndrome" by Rahul Rastogi MD. I just got the book and haven't yet had a chance to read it.

romans8

My doctor (not the surgeon) explained to me that my symptoms are a result of the trauma from the surgeries (3 in one month for TOS and 2 chyle lymph leaks) which caused several post op issues and definitely scar tissue at the surgical site. The complications of nerve damage to the phrenic nerve has caused breathing issues, the damage to the nerve that resulted in Horner's syndrome in the left eye (surgical side) is still evident and will not improve. The fatigue, nausea & light headedness is ongoing after almost 3 years and the nerve pain has become body wide and is worse at sleep which is when my symptoms seem to escalate.......My doc explained that the pain receptors in the brain became "over sensitized" due to the "over stimulation" of the nerves and the brain created a "memory" to this increased pain.
I asked if this could be possibly Fibromyalgia and he said that it was....In researching this through Mayo Clinics site, it does sound like it could be.
Hoping the Meds and the recommendation of Massage Therapy will improve and manage the pain.

Not sure all of your symptoms however you might want to research the fibromyalgia sites.

chloecasey

P.S. came across website....www.fmpartnership.org that has current info that might be of help for you and others

Could he be thinking of CRPS/RSD?
(Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS))
http://neurotalk.psychcentral.com/forum21.html

Some of our long time members w/ TOS developed RSD/CRPS also..
No one recently has mentioned the combination of dx's so I didn't bring it up.
Many would get a dx of fibromyalgia also.

Did you have any expert TOS PT at all post op?
*Oh I see in another post that it was your son that had the surgery?*

Unfortunately sometimes surgery doesn't fix the pain problem.. your doctors or surgeons should know that and advised you of the percentages , now they should give you a referral to pain management..
(if TOS expert PT doesn't help)

But I'd really try expert PT and/ or expert chiropractor, bodywork, therapeutic massage before going on meds only. And try many of the self care tips that we have posted on the forum.


If you'd like to make a thread for yourself /son with more information on symptoms/pain here is the link to do so -
http://neurotalk.psychcentral.com/ne...newthread&f=24

Neck Pain & body wide pain after TOS surgery
 

Recently, I came across articles about Fibromyalgia, as I have been experiencing ongoing pain since Thoracic Outlet surgery that has traveled body wide. I thought i would share that those of us who have ongoing pain especially in the neck and have been told it could be Fibromyalgia that there is a condition called "positional cervical cord compression" that shares similar symptoms of Fibro and that it is thought that it can be the cause of the pain due to extension of the neck back that causes "irritation to the spinal cord".
If anyone is interested in these articles, look up "Positional Cervical Cord Compression" by author Andrew Holman, MD

Kelly,
Given that I can use and raise my arm he feels the motor nerves are not as affected as the sympathetic nerve fibers which are the ones that transmit pain according to him. I do not have fibro. All of my problems are isolated to an area the size of a football in the lower neck, shoulder and scapula. I do not understand RSD so I can't say if it's this. All I know is I carried this condition in this area for almost 10 years with it getting worse and worse over time. I had TOS surgery within a year of first being diagnosed with or ever hearing about TOS. It gave significant, immediate relief that none of the spine or shoulder surgeries gave me. This wonderful time did not last but a few months before pain started back in the neck and crept back to the shoulder and scapula within a year post-op. I understand this is not uncommon.

I was supposed to go back to Dr. Pearl a couple of weeks ago but my flight was cancelled and I had to postpone until January. I have not been back to see him since the surgery and do not really put much faith into what any of the local doctors tell me as they do not understand TOS. I expect to be told I have scarred as my post-op report from the original surgery said I had a lot of scarring and fibrous bands requiring neurolysis in addition to the rib and scalene removal. I think the rib removal gave me great benefit but the scalene removal has not set well with my body. My scapula and shoulder pains are not as intense as before the surgery and I could live with those. However the surgery tore my neck up and I have extremely limited range of motion to one side. It feels like soft tissue has reattached and is strangling a nerve or group of nerves. I hurt to the touch everywhere in the concave area above the collar bone, across the top of my trap and where my scalenes use to be. So the bottom line is the surgery gave me partial improvement in the shoulder and scapula but significant worsening of the right side of neck.

What is also interesting is I had a frozen shoulder on my left side going into the surgery with some milder TOS symptoms. Physical therapy has cleared all this up and my left side only gives me minimal problems now whereas I expected to be facing TOS surgery on that side.

A lifelong battle. Have to focus on what is good in life and what will be very good when this life is over.

Romans8,

I really am sorry you're experiencing all this. I haven't been told I have sympathetic nerve problems. I've been told that my nervous system is on high alert and that I have a CRPS-like condition. I don't have changes in temperature or skin issues.

Like you, I can move everything, though I have limited range of motion in my shoulders and neck. I can do most things once, but I can't do anything without pain.

Take care,
Kelly