Stuck in a Circular Doctor Loop....heeeelp.

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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tinglehands
Posts: 2
Joined: Wed Aug 20, 2014 5:25 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus compression that affecting both hands with sleep interference

Stuck in a Circular Doctor Loop....heeeelp.

Post by tinglehands » Thu Aug 21, 2014 12:17 pm

Hi everyone-

I'm new to the board but have been battling this issue for some time. I have had 2 chiropractors and an experienced physical therapist at a top hospital in Chicago tell me I have compression of the brachial plexus. My hands are very, very weak all the time and I need to wear night splints while I sleep otherwise, my hands becomes extremely painful and "heavy" and cramped. I've seen a vascular TOS guy who said it seemed more like a hand problem. He sent me to a hand guy. I saw a great hand specialist and he said it was higher up and most likely a neurological / brachial plexus i/ TOS ssues and mentioned Dr. MacKinnon. They are playing ping pong with me and each appointment takes months to get. While the hand pain is definitely challenging, the side effect of the disrupted sleep makes the day even more unbearable.

Has anyone had a negative EMG and a MRI but has all the symptoms? They have done the arm maneuver tests on me and they all come up positive so I think I'm in that grey area. Would Dr. MacKinnon or the team at Mayo evaluate me knowing the above? Does anyone else have recommendations in the Chicago area? If so, have people found it to be a several month wait? Any and all thoughts would be greatly appreciated!

All the best-

Master DIVER TOM
Posts: 752
Joined: Tue May 05, 2009 11:51 am

Re: Stuck in a Circular Doctor Loop....heeeelp.

Post by Master DIVER TOM » Mon Aug 25, 2014 7:14 am

What a post :shock:
Your really are on a merry - go- round :|
You really need to get one of these doctor to get a referral to a BP specialist in Chicago ;)
You have a name of a doctor, so really ask one of your doctor to give you a referral to see him ;)
Doctors need to be put on the spot for sure to get a right BP specialist.
It drives me crazy :shock: That doctors are not forth coming to help to find a BP specialist in the the area you live. :evil: :twisted:
This is true no matter when these injuries happen by Sooo many post here.
Good thing we All have the tenacity to try, without a direction really is terrible thing to deal with by so many others posting here to ;) :D
For hand numbness with my birth erbs ,and pins and needle felling to . I have used a small rubber ball to squeeze it helps blood flow and helps stretch the hand and fingers to ;) :D
Hope this helps?? :roll:
Tom

tinglehands
Posts: 2
Joined: Wed Aug 20, 2014 5:25 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus compression that affecting both hands with sleep interference

Re: Stuck in a Circular Doctor Loop....heeeelp.

Post by tinglehands » Mon Aug 25, 2014 12:30 pm

Thanks for the reply Tom! If you can believe it, I could only find ONE guy in Chicago who is a brachial plexus expert. I guess our pizza and rib diets make heart attacks more the focus of life in Chicago :D

I called up that one specialist and they won't see me without a positive EMG or MRI. I have a 3 negative EMGs and negative MRI. Oh my, what a joke. To add to the humor, I was at Mayo awhile back, saw a hand specialist, vascular specialist and sleep specialist but the neuro folks couldn't fit me and said it'd be best to see someone back in Chicago unless I wanted to wait for weeks up there. Little did I know they were the most important part of the puzzle and had a specialty unit in BP. I'm trying to get back up there but it's no easy feat.

Do you have a doctor recommendations? I've been to Colorado, St. Louis and Minneapolis now so happy to let the tour continue! :lol:

I'll have to try the rubber ball. Thank you! Have you ever tried hand splints, especially at night?

All the best to you!

Master DIVER TOM
Posts: 752
Joined: Tue May 05, 2009 11:51 am

Re: Stuck in a Circular Doctor Loop....heeeelp.

Post by Master DIVER TOM » Tue Aug 26, 2014 6:00 am

Ok, This will be fun to explain :shock:
I like many here never new there was any help for are injury, In my case no doctor ever told me about any treatment or surgery :evil: :twisted: When I was 10 in the 60s , a doctor at a children Hospital told me there was no help for my birth erbs, and just told me I would have to , just live with it kid :shock: :evil:
When I see the posts of no direction or a referral from a doctor, no matter when these injury occur , a lot of people here end up on a quest to find a doctor for help :shock:
So the real quest is to find a BP specialist on your own and when you do ask for a referral from your doctor to see the BP specialist , If the Bp doctor needs other test then fine :shock: Have your current doctor get what ever you need MRI ,, etc done ;)
This Merry go round needs to stop in a referral process :shock: ;)
So go for it :shock: It tough being us :shock: :D
So anyway :roll:
There is a Bp Doctor that does go to Chicago to see BP injuries I meet him at at a BP picnic , a few years back,
His name has come up here from time to time.
Doctor Nath in Tx, web search this ;)
I think he might help you or might give you another BP doctor in Chicago threw his contact :roll: Oh it worth to Quest for :shock: ;)
Moving on :roll:
I never used a hand splint for numbness or pin and needles in my erbs hand, but I have fallen asleep holding the ball :shock: :D It helps with stress squeezing the small ball and helps with grasp. Over time ;)
Sometime my blood flow really got mess up in my erbs arm driving a semi around Chicago in the winter it would turn purple and in summer the arm would turn red , my best finds for color changes and numbness and pin and needles was the ball , exercise driving a semi with erbs and heating pad and ice .
My good arm got ripe up driving a semi and I have numbness and pins and needles in both hands :shock: Ouch
Hopefully this might give you a little direction :roll:
Oh I retired to NC from Chicago in January/
Tom

jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Stuck in a Circular Doctor Loop....heeeelp.

Post by jmar » Wed Aug 27, 2014 12:24 am

I went to dr McKinnon. She herself has TOS. she tries to do all she can to avoid tos surgeries. But is very willing to check out the bpi part of it. The tos surgeries is actually what caused my bpi stretch. But dr McKinnon done an excellent job at gettinga lot of function back for me.

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