Hi Diane,

Thank you for your posting. You seem so informed. Can I ask a few questions?

When did you have TOS surgery? and by whom

What type of job did you do prior? and did you get retrained to do now?

I have had neck surgery already...neck fused and now need my 1st rib removed and scalene on the right and the docs say perhaps on the left.
I'm currenlty under Peter's care...but of course anyone knows w/severe
TOS therapy dosen't fix you.....

Ann

Quote:

Originally Posted by annhere Hi Diane, Thank you for your posting. You seem so informed. Can I ask a few questions? When did you have TOS surgery? and by whom What type of job did you do prior? and did you get retrained to do now? I have had neck surgery already...neck fused and now need my 1st rib removed and scalene on the right and the docs say perhaps on the left. I'm currenlty under Peter's care...but of course anyone knows w/severe TOS therapy dosen't fix you..... Ann

Hi Ann,
I have not ahd TOS surgery; my daughter ahd two TOS surgeries,. A first rib resection and scalenectomy, a clean-up to remove scar matter and the cervical nerves were wrapped in pericardial patch materail in hope to keep scar matter off again. She was 16 when injured, 19 when the first surgery, she had two carpal tunnel surgeries and a breast reduction. Her TOS surgeries were by Dr. Allen Togut.

I think we creat our own life program of accomdations and read a lot, understand pros and cons, try different things and see what is worth living with and what is not. For my own daughter, I feel no more surgeries, she has too much scarring that happens, but perhaps a pain pump to help with pain.

I developed TOS Right side primarily, and left side cervical herniations in a work related accident as police officer. I reinjured my knee after two previous knee surgeries and my umbar and sacro-illiac.

I was a female police Chief and worked very hard for many years to attain my goals. I was unable to return to work and at almost 50 yrs old went back to college with the help of grants, monatary help and laptop from voc rehab. I graduated with a dual degree in Criminal Justice and sociology with goals of teaching part time.

I work 10 hours a week monitoring court ordered supervised visitations. high risk cases. While the paper work challanges me (typing filing,), I excell in my performance.

I receive SSDI along with my earnings so it helps my family. It is rewarding, I can't imagine those here that work full time. I come home beat...But, I have a ton of family obligations with a daughter disabled and grown son with TOS and lumbar injury (from a work injury unloading luggage) along with tumors in the brain on the pituatary.

I am the family taxi for doctor appointments, and care giver for my older daughter and grandson as my daughter in law works full time and son has bad days.

I have been educated on the road of hard knocks of TOS from the long time forum members here, and from the many sessions and trips to Dr. Togut, reading research, other doctors such as Dr. Sott Fried, Dr. Steve Annest, and Dr. Robert Schwartzman...They have been wonderful for information and support on this long journey.
Feel free any time to ask anything, If I can't help someone here will have some thoughts. I know there are several taht did have surgery for cervical fusion and also for TOS.

Di

I appreciate you all for your thoughts of caring, and I realize you all or most of you are in similar positions, either considering TOS surgery or having had it, some suffering more than others from surgery or before. But I think the risks of surgery are simply too high--without OBVIOUS test that are standard and regulated closely to determine if taking a rib out and neck muscles will help a person or not. I think the Medical Board should get involved and the ethics committees at each hospital and NOT let these LONE surgeons like AHN, and AVERY do their own thing. Perhaps Ahn is not doing these surgeries alone but he is now no longer with UCLA--and that should tell you something. Avery did mine SOLO--no colleague helping. That is a RED FLAG to me. Did he not want to share the income?? or can he not tolerate a colleague in there with him?? or will no one dare to do this surgery with him in the way he does it?? All of these questions come to mind. I realize that maybe in some severe cases something must be done to try to help an individual and I would never want that person's choice taken away--I just want there to be SAFE choices out there--not wild cards like I got. No one deserves what I got. And I'm sorry to anyone suffering from a bad surgical outcome like me--not to forget the abuse of BOTOX by Jordan. Best, Triste

When I read your message I wanted to cry, in fact I did cry for I can so totally relate to you. My surgeon cut my pherenic nerve as well, back in November 05. I have been on oxygen since December of the same year but not from any help from him. A whole other hospital had to diagnose me with it and saw that I was getting sicker every day. It was so bad I was seeing lights and passing out. The surgeon (and I use this title lightly) told me it was because I was overweight and needed to go walking around the block every day. I was having a hard time just walking to the bathroom and he wanted me to be out in the cold where it is even harder to breathe and walk at that. Here it is a good year later and I still cannot do it.... so if I died, would he be held responsible for manslaughter at the very least???? I went on to get fluid to my brain via my eyes.... so was told that I was going to go blind at any time, and had to have several spinal taps. Then took this horrible medication that made my hands and feet feel like they were constantly asleep... went and saw this eye doc for several months and they did all kinds of tests for me.... and then one day just poof.... the fluid situation is fine.... I have my doubts to this day. I had thyroid cancer and should of had radiation done about 6 weeks after surgery.... ha... I had that done 9 months after my surgery! I also have swooshing in my right ear (do you???) but if I press on my right neck area it goes away.... oh my... we both could go on and on.... please write me and let me know how you are doing.... please. In the meantime, take care, dolphineese

Hi dolphinese,
Is your swooshing in time with your heartbeat?
I had that sound when my neck muscles were tight and then in spasms for nearly a year.
My chiro was the one than named it {bruit} and told me what it was- the doctors acted like they had no clue about it.

Bruit- from- http://www.mayoclinic.com/health/bruit/AN00662
A bruit (bru-we) is an abnormal and often harsh sound heard over a blood vessel, usually an artery, with a stethoscope. It is synchronous with your heartbeat.

This sound is caused by turbulent blood flow, such as that due to irregularities in the wall of the blood vessel or to an abnormal connection (fistula) between an artery and vein. It is often a sign of an underlying problem — sometimes serious. For example, a bruit heard over the thyroid may be due to excess blood flow caused by Graves' disease. Heard over the carotid artery, a bruit may indicate fatty buildup (atherosclerosis).

Sometimes a bruit is only temporary and goes away on its own. Treatment of the underlying cause, when possible, may make the bruit go away.


funny -they don't mention triggerpoints or muscle spasms

Hi Jolphinese,

Please tell me who did your surgery....I am set to have surgery soon with a DOC in the SF area and I still need to do all my research to see if this is right for me. It seems the people that recover from a 1st rib removal surgery the best, are the ones who have suffered an injury rather than RSI.....of course this dosen't apply to everyone, but it seems to be a pattern. Those of us who have suffered and waited for years seem to continue to do more damage and then cross our fingers and go for surgery......But what's really the success rate......how many get back to a normal life. It's like diabetes, it's never going to be cured, you have to always hope you can control it.

Ann

Annhere-Please remember all i have told you about Dr. Avery is true and did happen. If he is your potential surgeon--please run away fast is my recommendation.

To Dophenese?? sorry I may have gotten name wrong. Did you have TOS surgery when your phrenic nerve was cut--or thyroid surgery? I'm so sorry for you as well. I am being blacklisted in my town and can't get the help I need even to breath at night. I don't believe my nerve is cut--but paralyzed for a long time and now off and on--but not full strenght.
I wonder how many doctors would murder a patient to avoid a scandal?? HOw many??? I'm not even a scandal--just poor now and badly surgically damaged, and getting worse? But they avoid me like the plague.
I am being medically murdered via neglect in Santa Rosa, CA. And it isn't like I don't want some help to lessen my suffering. I try--and they refuse. Times have changed folks in our medical system. It has become extremely corrupt.
You can't sue in California because of the cap on malpractice -pain and suffering.
Few attorney in California even do malpractice anymore unless you start out rich and lose your high paying career and find your own expert witness. And you can't sue if you can't breathe as sit up for long, or are in too much pain. We are amidst men who will murder patients today--including HMOs...medical schools no longer impresse or even require swearing in with the Hippocratic Oath. Times have changed and all that counts today is making Money in Private Practice, and SAVING money in HMOs. We are in difficult times as patients. Try to avoid any surgery that might make you worse is my only recommendation for the time. Best, Triste