[Stewy5]

My son has YOS and is scheduled for surgery Nov 15. Looking for some info on what to expect. He is a competative tennis player and wants to return to the game to play college tennis

[boytos]

Seriously stopping tennis is not so dramatic, i mean if the only thing he can't do is playing tennis he is lucky, for me :-)

Regards

[kap87]

I'm brand new to this forum and I am so excited to have found it. So thanks to everyone for sharing and to the admin. for running it :Smile:

I have been dealing with pain forever. I was stated complaining of pain in my back and neck as a kid (11 or 12 years old) and have been ever since. Finally, a decade later, I have a diagnosis.

After seeing dozens of neurosurgeons, orthopedic surgeons and pain specialists, my Chiropractor diagnosed me with TOS in July of this year. My coworkers convinced me to go see a chiropractor after they noticed that I seemed to complain allllll the time about my neck and back hurting. Reluctantly, I went. After 6 weeks of 2 or 3 appointments a week, my chiro recommended an x-ray as my pain was barely lessened and my neck was out of place almost immediately after it was adjusted. She found what she suspected the whole time... bilateral c ribs. I went through 12 weeks of P.T and two months of leave from work before we decided that surgery seemed to be my only option. My surgery is scheduled for the day after tomorrow!

It's so great to know that I am not the only one going through this. People don't seem to think that you are REALLY hurt or in pain unless there is blood or broken bones... Its nice to get advice sans skepticism from people who wont think I'm just making excuses for not going to work or doing the dishes.

So again, Thank you! Oh, and Hello!

[jdcrunchman]

Hello, this is my first post here. There might be some misplaced words, or some other grammatical errors in my message. This is because due to my hands being almost paralyzed, I cannot type, and have to use automatic dictation software to write this. So let me begin!

Last July, a Jubilant friend approached me, and without knowing what he was doing, pulled down very hard on the back of my neck. I have already gone through a laminectomy in my lower back last December.

I suffered no immediate pain from the incident, other than to my hands when my legs collapsed to protect my back my hands hit pretty hard on the palms. The next day, I started feeling tingling and pain in both of my hands.

As days progressed, it got worse and worse. I made an apartment with my sports physician who ordered MRI for my neck. Although my neck didn't have very much pain, my hands started getting worse and worse.

Up until this time, I worked out three times a week in a health club. Doing the normal exercises one would do to keep trim and fit. I started noticing major pain in the hands and doing the press ups and other exercises involving the hands. Each day got worse instead of better. That was when I saw my sports physician.

Although looking at the details of the MRI report, it shows that there are three protrusions between the discs in my vertebrae of my neck, getting dangerously close to my spinal cord. A cross-section analysis of the spine looking down from the top of the head, has revealed a lot less room for the root nerve going out between the C5 and C6 vertebrae. The disc was herniated, plus there was little room for the root nerves that go between the vertebrae, and a small canal or channel where the nerves live, has been greatly reduced in width.

Furthermore, there are three such protrusions where spurs that are pushed out or in depending on your perspective, these are pressing into the spinal cord. They are actually on both sides.

So further research into my condition resulted in the discovery of a endoscopic type of treatment, where the surgeon can go in with an endoscope along with other tools, and a very high pressure jet of saline water, to dissolve the spur and suck it away.

This is a relatively new procedure, and very few medical institutions practice this which take Medicare. I'm 67 years old now on Medicare. None of my group of doctors practice this procedure, now knows much about it, and I sent them articles, but (sigh) none has time to totally review it, nor would want to be trained to do it.

I found a place in Pomona California near where I live, to see a doctor who practices this procedure. I took all my records MRI, blood work to see the doctor. Unfortunately, I am not a candidate for this procedure. He then offered to do the surgery.

I wasn't interested in trying out a new surgeon. So I also made an appointment to see my original surgeon who did my lower back laminectomy.

He took a look at my records, and was very puzzled as to why I had so much pain, because the encroachment in my spinal cord didn't quite seem to touch it. This is because the spinal cord is in a sack of fluid. And when you look at it in the MRI, it doesn't show up that well.

This was when my surgeon referred me to another surgeon which I am to see on 15 November. His name is Dr Lawner working out of St Josephs hospital in Burbank, near a large medical complex near the Walt Disney company, I live just blocks away. I hear he is supposed to be the best, but initial waiting time to see him as a new patient, has taken me a month. Not surprisingly, since he's supposed to be so good.

I have already received two cortisone injections on my left back side of my neck, when in actuality both sides seem to have the pain, but the left side having the worst. Almost immediately after the injections, I started doing much better, pain level went down from a 10 to almost a three.

About 7 to 10 days later, the pain came back with a vengeance. The doctor also gave me three pain medications to deal with the pain. Gabaentin, Vicoden, Tramadol, and Predniscone. The Predniscone has cortisone in it, and help reduce the inflammation and arthritus, but prolong use can have nasty side effects... he only prescribed 10 tablets to be taken over a week.

About two weeks later, I had another injection in the same area. Again, the pain went down, and normally the second injections are usually expected to have a much longer affect in keeping down the pain. In my situation, the pain came back in about a week. What does that mean? Other then possible surgery, is there a longer term treatment?

The third treatment involved a Stellar Ganglon nerve root block, which only reduced the pain to about half, by voice was very weak, because the injection was done in the front of the neck and not in the back, It was a heck of a lot more painful. That evening, I did notice a reduction in pain, and the doctor told me that after a 48-hour period, the pain centers would reboot. Sure enough after 48 hours, the pain returned. This procedure was done as a diagnostic measure to isolate the area and source of the pain. Obviously coming in from MANY sources.

Based on information, both myself and my doctors have to make a decision as to where to go next, and this is why I joined this forum. To learn about any new procedures that may have been approved for human trial testing, or actual mainstream medicine, and to contact others who already had surgery and more invasive treatments.

I am an electrical engineer by trade, the when computers first came out, I went to software development. I've been a developer for all my life, working as a contractor. As of last July, my career as a programmer has ended, because without my hands I cannot write a program.

Capability tools such as MacSpeech, cannot be re-adapted to write programs.

I just got on Social Security, which pays for only 80% of my living expenses, and it is in the best interest I try to get back into the workforce again and make a living, and more important, pay off a huge debt of co-payments I owe.

Also bought a very good book on RSD *edit*

Although I just haven't yet read it, in looking at the index it appears that a lot of information is useful. Others might want to check this out.

Right now, I'm on a mission to try to find out any new research and human trials in the works for new procedures dealing with my particular RSD.

if anyone else has any links that give me clues as to where to find these research institutes, and I don't care where they are. They can be anywhere in the world as far as I care, even Cuba. I will travel anywhere I have to go to deal with this problem.

In the long waiting time, awaiting for the surgeon to see me, all I have done was constant research 12 hours a day, trying to find the best and the most advance medical treatments possible for this condition. I'm not very encouraged with what I've found so far, although I haven't as yet reached out to places like China, and other countries with modern medical technology.

Anyway, this is my story, and I hope that other doctors and medical professionals read this forum and can give me some good advice.

I already have my own set of doctors who I'm satisfied with. My sports physician, my surgeon, a neurologist, and a pain specialist. I trust their decisions, however they tend to lack details on new procedures. They are very good at what they do in more general medical procedures. But they tend to lack details on the cutting edge technologies. Most doctors tend to stick with the skill levels they are good at. But I believe there are newer procedures out there to my doctors don't know about. I was surprised to learn that most of them did not know about the endoscopic procedures. Which I later learned can only be applied to very specific problems of which mine do not match.

Anyway enough said.
I remain
John

[kelly1121]

If anyone can offer some advice on my situation, it would be GREATLY appreciated.
I worked as a processor for 3 years, while taking on-line classes, to finish a college degree. Meaning, I was on the computer for an average of about 12 hours a day. By the end of July (this year) my arm, fingers, neck, right side of head where fully symptomatic. You know...pain, numbness, tingling, stiffness... I went to see a nurse practitioner at my local doctor’s office and she wrote a slip for me to be off of work until I saw an orthopedic surgeon. To make a long story, shorter, I ended up seeing 4 different medical professionals until the last one diagnosed me with TOS. I have been off of work since July, without pay. The disability insurance (Harford) refuses to pay me because of lack of evidence of injury/illness. I've been in physical therapy for the last 6 weeks and it's slowly but surely helping (along with not being on the computer very much). Has anyone experienced this-having your short-term disability denied? I'm not sure what or if I can do anything about it. I already sent an appeal letter to them and they rejected that. It's not right to deny someone benefits just because they don't understand it (TOS). Oh, I was terminated fro my job as well (on Oct 18th). Can anyone relate?
Thanks for taking the time to read.
Kelly

[AnnaBanana]

I was diagnosed with TOS in June, after 2 1/2 years of various doctors, tests and surgeries. I recently saw another Thoracic Surgeon @ MGH who isn't positive that it is TOS, but he wants to do a CT since he claims their machine is better than the other Boston hospital's machine.

I am out of work due to the pain, muscle loss/weakness etc.

[pixified]

I was diagnosed with bilateral TOS just recently after developing collateral vessels and a swollen hand while pregnant. I've had very mild symptoms for years (mild shoulder pain once in a while and arms tiring when held over my head for a short time) but had no idea they were part of a syndrome! I'm currently in between seeing a local doc and a specialist at UofMichigan and contemplating whether surgery is right for me. It's been great to find a forum with others who understand how frustrating this can be (although it sucks that anyone has to go through it, of course).

[Texan0204]

Hi all!
So here is my story...
Went to the doctor because I had veins showing in my chest down my left upper arm. They did a sonogram and found a clot in my arm, so I was sent to the hospital. They ran a WHOLE bunch of tests. It took them a week to diagnosis me with Paget Von Schroetter Syndrome (effort - venous TOS). They did a TPA/Heaprin IV which put me in the ICU. Doctors did a 2nd venogram which showed that the thrombolysis didn't work as well as they would have liked. Rib resection was done Feb. 2010, on warafin until May 2010 (Scars above and below clavicle) I still have random pains (warmth and coldness in the arm) from time to time. I have to go to my see my surgeon ever year now and have a sonogram of my arm every 2 years. FUN!

[sueofct]

After 5 years of pain, tingling, tests, tests and more tests I was diagnosed wit TOS. I've had several whiplash injurues and brain surgery for Chiari 1 Malformation. Years of PT, accupressure, chiropractor - nothing worked. Now looking at surgery. I'm unlucky enough to now have this on both side, with the left being the worst. Surgeon talking about removing 1st rib going in under armpit. Said I'd be back to work (on a computer asll day) in 1 week. From what I've read, this sounds unrealistic. Looking for info on the surgery, recovery, etc.

Nice to find this group.

Sue

[BKRich]

I'm a 34 year old male. I'm an office/desk worker and until 2 months ago very active physically via resistance exercise, cycling and climbing.

I've been diagnosed by a Neurologist with bilateral vascular and neurogenic thoracic outlet syndrome, combined with bilateral ulnar nerve entrapment, which I believe can also be described as double crush syndrome.

The diagnosis was made on the basis of:

# My description of symptoms
# Physical exam by a manual physical therapist and neurologist
# Electromyography and Nerve Conduction Velocity exams
# MRI of my upper back/neck/shoulders
# Ultrasound to measure arterial blood flow upon abduction of the arms
# X-Ray to look for cervical rib or other abnormality

My first symptom, which lasted for 2 months before I sought help, was awakening from sleep with numbness present in left and/or right hand 4th and 5th digits. That was my one and only symptom for 3 months. After 3 months, and to the present day, my main complaint is that within 30-45 minutes of sitting/standing/walking with my head and neck unsupported, I develop pain in the rear neck area, which sometimes spreads to my trapezius and shoulders. I have less serious and frequent pain in my ulnar nerve around the elbow and forearm.

I'm currently undergoing physical therapy with a physio using the Barral system (a french physio)