Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 07-20-2014, 08:27 AM #31
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Let's start with I have bilateral TOS from a car accident in 2003. I also had right side Erbs Palsy at birth which resolved itself by age three months. I think I also may have had Klumpkes Palsy.

Dr. Annest and Dr. Sanders did my Pec Minor Release. I scheduled the pec minor release surgery, and then went to Denver for both this surgery and to meet Dr. Sanders, Dr. Annest, and Dr. Machenic for the first time. I had bilateral pec minor syndrome and I have bilateral TOS. Dr. Sanders was the first one to see me, and after examining me and giving me first a pec minor block with lidocaine on the left side and then an anterior lidocaine block on the left side diagnosed me with the fore mentioned.

Dr. Sanders told me that I needed both the pec minor release and the first rib resection and scalenectomy bilateral. He offered me the choice of waiting and having it all done at once in February, which was the next available opening, or to have the Pec Minor Release as scheduled in two days when I was there and coming back in February to have the first rib resection and scalenectomy done then. I chose to have the pec minor release then and the rest in February.

I did not recover well from the pec minor release. This was done in December 2013. It was not that the surgery itself had any problems, it was just that my recovery took much much longer than expected. Also, I forgot to tell them that I had Erbs Palsy at birth. This resolved itself, but this shows up on my nerve conduction tests, and it cannot be determined if this is from the current injury or my injury at birth. These two reasons combined are the reasons that Dr. Sanders and Dr. Annest cancelled my other surgeries. Dr. Sanders called me in April because I had called the office requesting the surgeries again, so I guess he may have been reconsidering my surgeries, but by then I was scheduled for botox, CAT scan, office visit with Dr. Donahue at MGH, so I didn't push the issue.

To answer your question about PT, I have done PT on and off for ten years with the primary focus being my poor posture. The pec minor release fixed my poor posture instantly. I still have issues with head forward position, but my shoulders are literally 3-4 inches back from where they once were. This was amazing! However, I had all kinds of neck pain, because it was a HUGE change in my anatomy. For ten years I felt like a complete failure in PT working on exercises to strengthen muscles, but not until I had the pec minor release scheduled did anybody do anything to help relax the pec minor. I had a PT dry needle my pec minor within a month or two of the surgery, painful as hell but it did give me some symptom relief.

My big question for you Rhonda, is why did you go to MGH and not see Dr. Donahue, lol?
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Old 07-20-2014, 09:01 AM #32
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Okay, so to give an update on my journey to the promised land....

My first bilateral anterior scalene botox was done on May 5. On June 19, I had bilateral median scalene botox. Felt pretty awesome for about ten days, kinda overdid things, had a flare, and it felt like the anterior shots went away. Scheduled surgery in September on left side. Found a doctor close to where I live that does anterior and median scalene botox as a diagnostic procedure only. Talked him into doing the anterior scalene botox, this is scheduled in the middle of August. He said if that botox goes well he will do the middle scalenes four weeks later. He is going to get my records from Dr. Donahue in the meantime.

My original plan was to get 3-4 rounds of botox, and do PT during that time to see if it will rid me if symptoms so much so as that I do not need surgery. When I felt as though the first shots wore off so quickly, I decided to just have surgery.

Today is 76 days past the first botox shots, aka the day I felt my fingertips, lol. Botox is supposed to last between 90-180 days, with the duration of effectiveness increasing over time.

At this time, my left anterior scalene is tight again. The left side is my bad side. I can feel it, and it is very very hard. The right side is not as bad. I can feel its hardness when I push in, but it does not stick out and push into my clavicle like the left side. In case anybody is wondering, I feel the anterior scalene by looking away from the side that I am trying to feel while siting or standing. So to feel the left anterior scalene, I turn my head to the right, so much so as to look over my right shoulder.

At this time, I am giving consideration to continuing the botox shots and postponing surgery. At this point, I am hopeful that I might be able to not have surgery on the right side, but think I almost certainly will need it on the left.

Postponing the surgery is primarily due my finances and not getting fired from my job due to missing too much work as I only have 7 weeks of FMLA left, and was told I will be off work for three months following the surgery. Being a single mom, not working for so long isn't really an option. I have applied for disability, and if I am approved, I will happily move forward with the surgery as scheduled. Hopefully, in the meantime I do not have an artery rupture, because a stroke or a hand that doesn't work won't help my finances either. God bless the Social Security Disability system!
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Old 07-23-2014, 11:50 PM #33
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Okay, well I put in a request for three months off work to have surgery. We will see how well that goes over. Yikes!
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Old 07-27-2014, 01:51 AM #34
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Talking pec minor release

hi there, I saw ur a pt of Dr donahues. Was wondering if he was the one who dx u w Pec minor syndrome. And if u had this particular surgery by him? I'm a pt of his I had bilateral tos surgeries. Now 6 mos postop started having severe worsening of sx & also some new sx. Left several messgs. W his tos nurse & secretary in the past 3 mos. But have not heard back from anyone. I am now very frustrated and depressed. Feel like I cant even do daily living skills!
Sorry for venting, any info appreciated.


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Originally Posted by Eight View Post
Bilateral anterior scalenes.

I got my pictures taken in Dr. Donahue's CAT scan. I will talk with them next week to find out the results and report on the botox.

I have since gone back and forth on the fingertip feeling since this weekend. It stayed it place from Tuesday to Friday constantly. My feet tend to fall asleep more now that started Tuesday night, it happens about every other day but it is not as painful as when the hands do at night. Yesterday the left side of my face fell asleep. Weird! My left side is worse. I have had quite a bit of nerve pain. Yesterday my left had turned a little bit bluish (new symptom). I laid down with my heating pads (yes plural) for a bit. Then my left hand and arm got warm, the blue went away, then the left hand looked maybe a little swollen, and got very warm for the rest of the evening. I could feel strange sensations on my whole left side all evening. It was good though, like things were trying to return to normal.

Today the whole left side is cold, and achy. Fingertips feeling is still there in some of the fingers, but not all. The achy part feels like nerve pain. It is still morning though. Everything is always worse in the morning.

My work is sitting at a desk typing and aggravates my symptoms significantly. Needless to say, my attendance has been lacking.

My goal is to be. "Fixed" one year from now. After ten years of this crap, I am finally open to surgery - everything got really bad last fall.

Anyway, Dr. Donahue is awesome. I am glad I went to see him. I wish I had years ago.
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Old 07-28-2014, 09:48 PM #35
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Dr. Donahue often does the pec minor with the first rib resection and scalenectomy is my understanding. Did you not also have this done? Six months isn't that far out, I think it really takes a year to return to "normal". What are your symptoms? I got "costrochondritis" basically just from all the shifting around from the pec minor and then the botox. How are you worse? Also, what is new vs. old? I have surgery coming up, very soon....

I frickin' diagnosed myself with pec minor syndrome off of info from these boards and the internet. I sent my records to Dr. sanders and scheduled a bilateral pec minor release. I went and then was officially diagnosed by Dr. sanders, but again, this is after I had already scheduled the surgery...two days before in fact. I flew to Denver for this surgery.

The St. Nicholas House Hotel is across from the hospital and is for hospital guests at $58.00 per night. If you fly in, you will probably need to rent a car, especially because Dr. sanders and Dr. mechanics offices are not located by the hospital, not in walking distance. You could probably take a cab, but the airport is away from the hotel/hospital.
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Old 07-28-2014, 09:49 PM #36
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Oh, they were both out of the office for the past three weeks. I would try again.
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Old 10-12-2014, 01:38 AM #37
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Update: I got a second round of botox on 9/2/2014 on the right middle and anterior scalene. This time it took a full four weeks to kick in, not four hours. I just wanted to share this so that nobody gets discouraged if it doesn't work right away.

I had surgery 9/3/2014 with Dr. Donahue for scalenectomy and first rib resection on the left side. There was scar tissue on the artery, brachial plexus and T1 nerve root that was all removed as well.

I've been doing well, but overdid things one day like an idiot because I got some water in my basement. My whole hand went numb, and face started twitching. The hand is better, but the face still had issues.
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Old 01-01-2015, 05:34 AM #38
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Update: botox injections received again on right side. Botoxed side had more sensitivity than surgical side, but surgical side has less tightness in the traps.

I was told it would be 1-3 years before the nerves grow back and heal. It took 10-11 years to get this bad.

Right side aka former Erb's Palsy side is scheduled for surgery in February.

Facial Twitching is likely hemifacial twitching at this point and unrelated to the TOS, will look into this and rotator cuff issues more after TOS surgery.
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Old 01-25-2015, 03:37 PM #39
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11 days until my next surgery!!!!
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Old 03-07-2015, 11:08 AM #40
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Hello, everyone! Turning this thread into my personal blog I guess. When I was deciding on a doctor/treatment, I was following people's posts on here, but their posts were all spread out. Hopefully, keeping some of my updates here will be helpful.

Okay, Thursday was 4 weeks post my right side first rib resection, anterior and middle scalenectomy and removal of scar tissue from the brachial plexus. (Dr. Donahue)

I am 7 months post surgery on my left side first rib resection, anterior and middle scalenectomy and removal of scar tissue from the brachial plexus. (Dr. Donahue)

I am 15 months post surgery for a bilateral pec minor release. (Drs. Annest/Sanders).

So my right side surgery went smoothly. I have numbness a the end of all of my fingertips and the 4th and 5th digits. It is slowly getting better since surgery. However, being able to compare the two sides has been an great thing, because I can tell that the left side usually feels better than the right.

My left side is more cordinated than my right side at this point with all gross motor skill. I am right handed.

I currently that whole, "they took a bone saw to me" feeling in the rib (which a lidocaine patch to the back seems to help alot - along with hydrocodone and advil). I know from my previous surgery that this feeling really starts to go away at 6-8 weeks when the rib bone has capped itself off. I was also given Soma, by the neurologist, I think mostly so that I would sleep and recover.

However, nerve pain is definately going to be a lingering problem for me. Nerves regenerate at 1 inch per month. I am guessing that it will take about 3 years for my nerves to regenerate and I won't have the nerve pain anymore. My left side is already less painful than my right as far as nerve pain goes, but it is still pretty intense.

I quit taking gabapentin because I gained 60 pounds on it (stopped this sometime in November 2014 and have already lost 15 pounds just laying around, so that's happy). Tried Keppra, but it made me dizzy, now trying Tegrital.

I also take r-lipoic acid, b-12, multivitamin and use a TENS Unit with gloves every day for at least 20 minutes.

Typing sucks - my fingers are all confused - 4th digit is about two letters behind all the other fingers on both hands.
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