Hello All:

I'm upset, and I would appreciate anyone's input... My story is long, but I will try to make it as brief as possible.

I am a long time TOS sufferer. I've had it for years and didn't know what it was. It originates from repetitive strain and carrying heavy bags on my shoulder.

A year ago last March, I started having symptoms in my opposite hand and arm. After seeing many specialists who could not diagnose me, a chiropractor talked to me about TOS. It fit. I had every symptom. I tried to eliminate my symptoms through stretching and exercise, but didn't have any luck. I needed to get back to work and decided to see a specialist in Denver.

Shortly before my trip to Denver, I started having numbness in my feet. When I arrived in Denver, I asked the doctor about it. He said it was not related to TOS. He confirmed I did have bilateral TOS. The scalene block eliminated all of the pain and tightness in the neck, shoulder, jaw, all the way to my hand.

He recommeded both surgeries (pec minor release and scalenectomy). I opted to have the pec minor surgery on both arms. I had good results from the surgery. The numbness and pain in both arms and hands went away. I still had some discomfort in the shoulder and neck area, as I was told I would.

I was able to land a short contract job a few weeks later. Up to this point, I felt good. The numbness in my feet also went away. Within a day or two of starting the contract job, the pain was back. My neck and shoulders were so stiff with pain, I could hardly move. I decided to have the scalenectomy.

I had the surgery. There were no complications. I was pretty much out of it for three weeks, and I was told this would be normal. After the fourth or fifth week, I decided to go back to my GP. The numbness and pain in my feet was working it's way north to my knees. In addition, I felt like I was coming down with something. I know this is foolish, but I had hoped the numbness and pain in my feet would go away with this surgery. I know that there have been others who had TOS and also had numbness in their feet.

At any rate, my GP said I probably had a neuropathy of some sort and prescribed Neurontin. It helped some, and I felt like I was recovering.

Over the next several months, I tried making lifestyle changes like eating better and exercising. I had developed severe migraines in an area that I never had headaches before, felt fatgued, and just poorly in general. This resulted is a couple of trips to the GP. They ordered tests for hypothyroidism and general lab work.

A few more months go by, and I get more symptoms. I notice the pain from the neuropathy is considerably worse just before and during that time of the month. It was also spreading. I have insomnia, short periods of nausea, problems with my vision, problems with memory and congnition, persistent sore throat, and depression. I think I possibly have fibromyalgia or CFS. I return to my GP. I was told no, I don't have the tender points for FM, and CFS generally comes on all at once, not gradually.

At this point, I ask for a referral to a neurologist. I knew the above symptoms I was having were not related to TOS or PN, but needed some relief from the PN. I go to a neuro. They order a MRI which comes back negative. He asks if I have been tested for lupus or diabetes. I wasn't sure if I was tested for lupus, but I knew I did not have diabetes. So I go back to my GP to request a test for lupus.

My normal GP wasn't in that day, so I see the partner. He orders a lupus test in addition to general blood work. He said my case was puzzling. The office has a policy that you have to come in the office for test results. No results are given over the phone.

Here's where I start to get upset....

A week or so goes by, and I return to my GP to get the results of my blood tests. She seems somewhat frustrated with me. She said my tests were normal, and she really couldn't do anything else for me. I try to explain that I know something is wrong. I am not a hypochondriac. I am trying to get to the bottom of my health issue. I need to go back to work. This whole process is about to financially bankrupt me. As an after thought, she said she didn't order a test for Lyme's disease. She writes the orders and gives the paperwork to me. She said I should go to the specialists and let them figure it out, that I did not need to come back to the office. I take my paperwork to the front receptionist. The receptionist also repeats that I do not need to come back. I asked what about my test results. She said they would call me if the results were positive.

I found this odd. It was almost as if the dr. had written something on the paperwork to indicate to the receptionist to tell me not to come back. Later, I thought I was being paranoid and let it go.

A short time later, I receive a letter from the hospital in Denver where I had the surgery. They inform me I may have possibly been exposed to hepatitis c through a terminated employee. I live half way across the country, so I naturally hadn't heard anything about his. I did some research on the internet, and it turns out that allegedly a surgical tech put thousands of patients at risk by stealing pain killing medication, injecting it into herself and returning the used needle back to the tray knowing she had the hep c virus. They already had over a dozen people who had contracted the disease. The hospital requests a blood test to confirm.

I take the blood test. A week later, the lab calls me to inform me that there was a lab error, and I have to retake the test. At this point, I'm a little concerned. I know the chances are slight, but still there is a chance, and I have not been right since the surgery. I call Denver and find out that the time frame is likely three weeks after the test is taken. Since I'm half way across the country, I figured three weeks plus a couple of days since I have to retake the test.

Even though my GP told me not to come back, I felt this was a new development. I also wanted to know if any of the blood work I had done over the last several months would indicate that I did not have the disease. I also thought that maybe they could order the tests and get the results sooner than three weeks, so I could have some peace of mind. The letter from the hospital recommends that I discuss the letter with my personal physician.

I call to make an appointment. I explain to the receptionist why I need to see the dr. A short time later, a nurse calls me explaining that there is nothing more the dr. can do for me, that I need to follow up with a specialist. I was so upset, I just hung up. I couldn't believe I was being treated this way.

I know that doctors are human and get frustrated with people. I know they have difficult patients. I thought maybe I was overreacting because I'm sick and tired of going to doctors and them telling me they can't find anything. I am also emotional because I can't work and I'm running out of money. Who will hire someone who has to be off for several days every month and can't concentrate on anything long enough to complete a project?

Anyway, I've vented long enough. I'm going again today to Quest to repeat my test for hep c, and I'll wait out the three weeks.

OMG Sunny, this is terrible - and oh-so frustrating!!! No, I don't think you're over reacting.

I have a couple of comments (note: I am not a Dr):

1) "I was able to land a short contract job a few weeks later."

having TOS is a serious condition. I don't know what this job required of you physically, but even computer work is 'repetitive stress' on your already compromised arms. Post op... you should be giving yourself at least 6 months or more before trying to go back to work (I've had the pec minor release, so I understand what your body is feeling).

2) "I had developed severe migraines in an area that I never had headaches before, felt fatgued, and just poorly in general...."

Migraines go along with the TOS and if you are still doing repetitive arm use, it can cause the migraines because the nerves involved in the thoracic outlet are ******!

3) "A few more months go by, and I get more symptoms. I notice the pain from the neuropathy is considerably worse just before and during that time of the month."

Your leg neuropathy, along with 'time of the month'... have you had a full spine CT or x-ray? This sounds like a disc or vertabre problem. Additional swelling from time of the month can make it worse? Just a guess


4) "I have insomnia, short periods of nausea, problems with my vision, problems with memory and congnition, persistent sore throat, and depression."

I have all this too. the irritated nerves (long thoracic, etc) may be the ones controlling autonomic things like throwing up (nausea), breathing, etc. These irritations can be waking you up at night (insomnia).

Also, peri-menopause can cause insomnia too. we always have to look at the possibility of dual diagnoses.


Personally, I think your GP is overwhelmed with you and obviously does not want to admit that you have a condition he has NO CLUE on how to handle. So he has let you go - with no referral to another GP?!?! What a loser.

I heard on the news about the Hep-C scare in Denver. If I were you, I'd ask the Dr you saw for surgeries to select a GP for you where you live. That way the surgeon can brief the new GP - it always helps for Dr's to talk to Dr's. They keep each other in check.

Sweetie, you also need to be mentally prepared for the possibility that you may have to stop work. Depression and chronic pain go hand-in-hand. Please see if you have any county mental health services that work on a sliding scale fee.

If i think of more stuff, I'll add it. My hands are spent now.

Anne

Astern gave you good advice.

IN RE: #3. yes, PMS causes my cervical and lumbar discs to give me more pain and problems.

I know how frustrating doctor shopping is. I know how it feels to lose confidence in doctors.

I know all of them are not that way.

TOS is certainly tricky to treat. don't give us many options for recovery, and the options we have are not good ones. We're all in the same boat there.

If you look at things in the short term, I'm sure it don't look good right now. Pain patterns do change over time, hopefully for the better.

Don't give up. You'll find a good doctor to take you on. May be hard, but there's one out there for you. I had to drive 3 hours to find Dr. Atasoy in Louisville. He's a cardiothoracic surgeon but he's helped me with my neck and back and other problems. treated me more like a whole person, as my whole body, except my right leg, had problems. I'm so thankful I found him.

You may want to collect your medical records from all these different providers. Just so you have them for whatever comes up.

I've been out a loooooooottttt of money too on medical care. It's no fun.

Hang in there... we're here for you.

Sunnydee,

Depending on your area, some people may be able to recommend a doctor. You need a specialist for TOS; one who knows the syndrome, and a pain management doctor also. My family doctor won't treat it either but I keep her informed.

Thank you for listening to me vent

I will find another doctor. Actually, I wasn't very impressed with this one anyway. It's probably for the best.

Thanks again

u r not overreacting. i suspect u have been "black listed". i wish u luck in ur seach.

i also have lower extremity problems. occasionally my right leg "gives out". it happens so seldom that the docs are not concerned. however, this symptom has caused me greater injury when it happened and i fell yet again. all they have done so far is nerve conduction studies, came out negative. this symptom started when i fell and had a rotated pelvis. it continues to rotate back into the wrong position. i have some exercises that push it back the way it is supposed to go. it can also push it too far in the other direction, so my therapy is basically a wild assed guess of when and how much i need it.

most all tests i have been given have come out negative, and i believe that i am perceived as a hypochondriac too. after a while i just gave up on doctors. i don't even try to find one unless i am almost dead from something. i suspect this is what has made me more healthy.

What a sad but common experience for us.

If TOS is not related to our legs, then why do so many of us have nerve damage there? (It comes later...)

I think that when the nerves start malfunctioning, it can affect that whole system. Especially if we develop RSD (the sunburn pain), or fibromyalgia (the bone-ache flu like pain.)

You should read our thread called "ALL" of our symptoms cuz there's a LOT.

Also, I am going to post my thread on how the testing works.

But remember what Dr. Brantigan told me - "there are hundreds, perhaps thousands of neurological diseases that the docs have not yet identitified or named." Perhaps we all fall into this group.

One other interesting note - I've had TOS for 7 years. My mom used to ridicule me. This Christmas her legs went numb up to her chest. Seems she's having more trouble now - the ER kicked her out. (Sound familiar anyone?) I don't want to see her have pain, but boy was she asking for it.

What worries me about you is your blurry vision which is what I had with Lyrica right before my body went Diabetes II. Even though I stopped the med and changed my diet, Diabetes II has remained a difficult opponent. Your blood test sugar level (anything over 100) should tell you.

God bless you. I've seen 36 docs I think so far...

Obviously, that wasn't the doc for you, but it reaaalllly bugs me the way he dumped you without a follow up plan.

I think that doc has a responsibility to say, "I don't think we are a good fit and I recommend you find a new primary doctor.....here are some I can recommend."

If he really believes that you are a hypochondriac(and I'm not suggesting you are, just pointing out what an *** the doc is) , he has an absolute obligation to make sure that you are following up with a psych consult

I'm so sorry to hear of what has happened to you. You must be proactive and find out what is wrong. No one else is going to look after you but you. I am very interested though in the leg pain that you and others have said. I am in so much pain in my legs, sometimes I can't walk in the morning.

You should definitely find a new doctor. Don't put it off. Hep C is not a good thing. I know someone with it and you must treat it. Best of luck, and, feel better! Linda

Hey, so sorry to hear your story - some healthcare professionals have no right to call themselves by such a name - where is the care???

Just wanted to throw in that i cannot do any job involving reptitive arm movements - i work with kids now and although i still find it difficult i do find that the flexibility that this role offers my posture makes it bearable for me.

My physio says that a lot of muscles on my right side (tos side) are operating abnormally now due to my body trying to protect my arm....sounds strange but the way she explains it makes sense!

Wishing you the best of luck with everything!

x