[jenB]

Hi,
I am 30 years old and have TOS. I am post decompression of first rib and cervical rib with scalenectomy August 2007 in Cincinnati with Dr. Zenni.
I will start with my symptoms. I did not have any accident or injury to initate symptoms, but I had a previous CT scan of my neck that found the right cervical rib incidentally while checking a few swollen lymph nodes (nodes were fine). I had no symptoms at that time, just knew I had a goofy, rare issue of an extra rib.
And then...
I always had this achy problem with my right pinky finger, especially while driving. I never paid any attention until I started with achy hands that would occasionally swell. It got so bad that I didn't even want to hold my pencil. I worked for my PCP (I'm an MA) so I mentioned it and we checked some labs to rule out Psoriatic arthritis (I have psoriasis). Labs were fine. I though I was nuts or just working too hard. A few weeks later I woke up and my right arm was completely numb from the shoulder down. I couldn't blow dry my hair or anything that day. Later on my hands would change colors (purplish) and would be cold (Ihave a history of Raynaud's-which is also related to cervical rib). I immediately saw my PCP and told him I thought it could be related to this cervical rib. I had no other explanation for it. He said to just watch it and see a neurologist if it didn't settle down. I knew in my gut something was really wrong. I saw the ENT that originally found the cervical rib. He told me to see a Neurosurgeon and a Cardio-thoracic surgeon and not stop until I had two opinions that matched and to take care of it "sooner than later to avoid permenant damage". That freaked me out a little, so I made my appointments.

My symptoms began to progress. I first saw a neurosurgeon that had never done this type of surgery before, but was convinced that I had vascular and neurogenic tos based on his clinical exam. He gave me some exercises to do and told me to see the other doctor for another opinion and then see him again. I saw a cardio-thoracic surgeon who did not think it was vascular because my symptoms came and went. He did think that I had classic neurogenic tos based on his evaluation. (my hands were blue when he walked in the exam room). He wanted me to continue exercises, but he gave me an 85% chance of full recovery with cervical rib decompression, first rib decomp and scalenectomy. I had heard great things about this doc from another doctor friend and felt comfortable with him. I discussed it with my husband and I decided to have the surgery.

I had surgery on August 21, 2007 at Christ Hospital in Cincinnati. I was in the ICU for 3 days. I had a morphine pump that gave 1mg every six minutes if I pushed the button. Believe me I pushed the button. I had a drain, which was removed on the second day. My husband stayed with me the whole time. he was great! I would fall asleep and would not hit my morphine pump and wake up in a great deal of pain. he would stay awake and hit my morphine pump for me. Long story short, my recovery was painful, but I was in pretty good shape after the four week mark. I still had symptoms, but I assumed it was part of the healing process. It was a Major Surgery! I went back to work after five weeks home. Unfortunately, I started having recurring symptoms around the six week mark and again at the three month mark. I made a follow up appointment and the doctor said he didn't think the surgery was successfull. I was told to see a neurologist and have PT. I did not have PT prescribed for me post op, I had to ask for it.

I was crushed! I didn't want to live like this. I am 30 years old and mother of 2. I am very active and have being held down. I was a little depressed at first, because I have another form of chronic pain called Interstitial cystitis. I just didn't think God would put me through two problems so complex and debilitating at times. I have not seen the neurologist yet, but I have an appointment coming up. I kept telling myself I didn't give it enough time. I just needed to give it a little longer. I am having a hard time typing, driving, dishes, laundry, doing my hair, doing anything with my arms above my head or even just out in front of me. I simply can't do it for more than 10-15 seconds. I can't even hold a drink for too long. The bad part is that it's my right hand - dominant side. The scary thing to me is that after surgery I found out that I also have a rib on the left side. Since I have been compensating for my right side hurting, my left side has shown more symptoms as well.

Gotta go, but any suggestions would be great.
JenB

[DM]

Wow, Jen~ That's a rough thing to go through and not have good results. I'm really sorry to hear that. I am, however, glad that you found us, so Welcome to NeuroTalk. Please take a look at the many forums here and make yourself at home..

I'm sorry I can't help w/your problems, but did want to welcome you.

[glenntaj]

Yup, that certainly sounds like Thoracic Outlet Syndrome. But I also wonder, given some of the other info you've posted, if you've having additional neurologic trouble from other causes.

There is a concept in neurology known as the "double crush phenomenon"--when peripheral nerves are assaulted, they may or may not be symptomatic, but when they are assaulted by more than one condtion, previously minor symptoms may blow up, or symptoms may appear when they did not before.

This has been well documented, for instance, with diabetics--because their nerves are often already suffering ischmic damage, they are more prone to compressive effects than non-diabetics would be, and so have higher rates of carpal tunnel, tarsal tunnel, and spinal nerve root compression (radiculopathy). This is also common in people with hypothyroidism and autoimmune conditions; it seems the second hit is what really makes symptoms increase.

You may want to get a more thorough neuro work-up to check on such possibilities (especially ulnar neuropathy, with those hand symptoms). Many of us like (and contributed to) the spreadsheets at www.lizajane.org; great way to see what tests you've had and track results over time.

Two other good links here--

The peripheral neuropathy forum:

http://neurotalk.psychcentral.com/forum20.html

and the thoracic outlet forum:

http://neurotalk.psychcentral.com/forum24.html

[MelodyL]

Hi JenB

Interstitial Cystitis?? Good Grief, no one should ever have to live with that, let alone the other stuff.

Years ago, they thought I had that. I had bladder spasms for years.

Went to doctor after doctor, had trans vaginal sonograms (see, I even remember the tests that were done), I had a cystoscopy done.

I had ALL the tests. They never found a reason.

I had the urge 24 hours a day. I was also going through some awful stuff with my son. Caused a great deal of stress.

One day (after 4 years of this no less), I went to my doctor and said 'give me a muscle relaxer. He did. I never even got the chance to use them.

The same day he gave me the muscle relaxer, well, that night, I was in the shower, and all of a sudden, the whole spasm thing JUST WENT AWAY.

I will never forget that as long as I live. It just went away.

They never found out why.

So all I can do is say a big welcome and I hope you find some answers here on Neurotalks.

Take care.

[AfterMyNap]

Hi JenB! Welcome to NeuroTalk!

I see that Glenn has given you some starting points, let us know if we can assist you in navigating the forums.

[dorrie]

HI JEN!! WELCOME TO NEUROTALK