Topic: Thoraxic Outlet Syndrome, anyone here deal with this and Lyme?
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< LymeNet family >>>>>,
I was born w/an extra rib om both left and right, and developed Thoraxic Outlet Syndrome because of it.
[ The extra ribs, were supposed to be the last vertebrae in my neck, but grew into actual ribs, which caused problems squeezing arteries and so on, painful, causing numbness and serious headaches among other symptoms].
I met a young teacher who'd been in an accident,that caused her to have the TOS symptoms. But I've only come across one other case of the extra rib issue causing it. The extra ribs are in a birth defect.
In 1982, a rib resection on the right side only [ they botched and I have a damaged lung because of it], was supposed to stop the problem from worsening.
The most recent Myoclonus Seizure like episode that I had [Nov.11th], has me questioning if it could be TOS again??? I know that Lyme and Co's will attack the weaker areas of our bodies.
Has anyone else here dealt w/ Thoraxic Outlet Syndrome and or extra ribs that should have been vertebrae? If so how do you deal with it and w/ the Lyme and Co's???
Thanks in advance, for any tho'ts,input or information.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' me checking time difference, due to time zone,and hopeful that someone else may have info on the TOS and such...
Silverwolfi here
edit in: okay, three hour difference...
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Go see a hand therapist who has extensive experience in TOS. I had it from an accident - it can be brought under control with therapy.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I was told I had that about 25 yrs ago. I think I have some symptoms of it from time to time. Back then a chiropractor helped me with massage and adjusting.
Hope you can find someone to help you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< beths and Lymetoo >>>>>,
I wish I could have the opportunity to go to a therapist,of a Chiropractor for the problem.
In 1981,our Chiropractor sent me to a surgeon as the problem was very severe. After the right side was taken care of we hoped it would be enough.
There've been minor symptoms from time to time but I think the Lyme and Co's have hit it,and it is worsening.
We have no money, seriously, what comes in goes back out for rent, the car [no it isn't new], and paying utilities.
We buy what food we can... as inexpensively as we can find it [ remembering we are on special and restricted diet].
Again I don't have insurance,we literally cannot afford it. We are not pleading for money,from any one here. Just trying to get by as best we can.
TxCoord was promised all sorts of monetary aid thru the VA, we've been fighting for FIVE YEARS [emphasis ,not yelling] and still no conclusion. I go to my slide fee clinic Dr. every three months, but there is little they can do.
If it is the Thoraxic Outlet Syndrome again, I/we don't have the money for me to go thru a major surgery. I almost died w/ the first rib resection. As I said before, I have a damaged lung from it.
While I do appreciate the replies, I hope all can understand the discouragement, TxCoord and I are going thru. Right now, I cannot even get many of the supplements I need, because of finances.
Essentially LymeNet is a lifeline for me, and our main source of information for fighting Lyme and Co's. So when I can manage too, I ask questions,and try to read info.' links.
It would be as expensive or more to stay in Idaho, and harder on TxCoord. The three and a half hour trips, to VA hospital were wearing us both down [ for all but very minimal things he had to go from Pocatello to Salt Lake city.
Where we live at now, the prices, food,rent and so on, are comparable, and we don't fight blizzards, and below freezing temps.It is about 20 minutes to the VA hospital, and there are several VA clinics w/in from 5 min. to 40 minutes for TxC.
My clinic is about 20 minutes a way,instead of almost an hour. Sadly there are no LLMD/Nd's near us. TxCoord needs to be evaluated for the Lyme and Co's as well. But VA doesn't believe in Lyme disease.
And TxCoord still must pay for most all of his prescriptions... they entice and lead one down a rosy path...to bad it seems to be all lies.
The nutrition and diet clinic seems to be one of the few that is helping. VA did cover TxCoords three surgeries,but we've learned not to believe them as to compensation monies.
And yes I tried to get on SSI, SSDI was not an option as I don't have enough 'work credits'. I don't qualify until I am 65 and then I will get half of what TxC' does... if SS still exists in 7 years.
I really don't mean to sound complaining, or whiney. Just trying to find answers that we can afford. We are trying to get info' on any programs in area, that might help. So far I've fallen thru the cracks. And we've tried to find help a number of ways.
Seems I am always: to young, to old, wasn't able to work long enough, and don't qualify...for whatever reason.
Again, thanks for replies,and input. It at least helps, knowing that others have been thru some of this, and lived to tell about it.
I hope y'all can continue to be patient w/ TxCoord and with me,as we try to find answers, that are affordable...with no money.
Jus' Silverwolfi draggin' my tail in dust
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Very sorry to hear, Silver. Maybe you don't need surgery. Hope not!
I will keep praying for the VA to come through for you guys. Such a travesty of justice.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
Thanks for the reply and the continuing prayers!
I don't know how I could afford the surgery, and it would probably be two. Being overly well endowed isn't helping matters.
Surgery in general, after having several,is frightening for me, especially w/ Lyme and Co's. If the TOS is in fact causing problems,as suspected,
they would suggest a rib resection on the left side to balance it out w/ the right, already surgically treated side.
I had hoped after the surgical mess in'82, that the TOS could be kept under control. I was told sometime back,that if they do one side,
and there becomes more TOS type problems they usually prefer to do the other side to get things back in balance.
I was hoping being able to lose weight,slowly and steadily, would help calm issues. I've been told sometime back that a breast reduction would also be wise
[ breast tissue isn't going to lose that much weight thru excercise and diet].
When the TOS problem worsened again, I wasn't connecting it until recently. I tho't it's just more Lyme and Co's problems. But now, I really think the TOS is flaring, especially where as Lyme and Co's can worsen an existing problem/weakness.
Will check w/ Dr.at slide fee clinic after Christmas but they are limited in what they can do really.
As to the VA mess,it is sickening, and it is happening to who knows how many men and women who are veterans.
TxC' is frequently on laptop, filling out more paperwork, writing letters and so on. We have a congress person whose liason is working w/ us trying to help and they are stymied too.
So far either the day or so after a Holiday,or right before,the VA manages to get some note to us, of bad news. The case is remanded to XYZ to get moe info', or we refuse to do ABC send a letter of disagreement by _?__date.
In other words,classic delaying tactics, designed to try to make one give up.Files disappear,or froms get lost,and/or we are told we 'misunderstood' etc.
It is happening to so many of our Veterans,and it is wrong. So many things going on that are grave wrongs.I better stop, can't afford to get more tense, about things like no follow up after medical issues that send people to VA emergency room...
We are praying and hoping, the next time we get news on VA matters, it will actually be good news.
I'll check back in later...when possible,
Just Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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