what did you experiance?

[Leanna]

I had them both and they are not the same. One is used for meds etc. placed at the collar bone, and the other just drains the fluids away from the lungs. This one is placed on your side a few inches up from your hip. Its closer to your backside so it is very difficult to see.

[Davis]

Thanks again everyopne for your responses.
By chest tube I meant a tube into the lung. I hade one of those when I was sixteen because my right lung collapsed. It was an emergency surgery so they just kinda wheeled over a tray of scalpels and such and went to work on me in a side-room off of triage. I did get a local anesthetic though. I remember asking why my lung collapsed and they said they didn't know and that it sometimes happened to people of my stature, tall and thin. I asked if it could have anything to do with the scoliosis and they said they didn't know.
But there's another "main" line that some people get? For medication obviously. I wonder if that's common practice with this thing?
And Radiogirl, the pictures are great, it looks like they achieved a great amouint of correction with you. Congrats.

[Pooka1]

Did you have a pneumothorax?

If you are tall and thin and have scoliosis and had a spontaneous pneumothorax, you might want to get evaluated for Marfans syndrome.

http://ats.ctsnetjournals.org/cgi/co...tract/37/6/500

Not saying you have it. Just saying you have some signs and symptoms consistent with it.

[JenniferG]

Thanks for that clarification. Obviously I did not have the chest tube then, it was the central line, near my collarbone.

[Davis]

Did you have a pneumothorax?

If you are tall and thin and have scoliosis and had a spontaneous pneumothorax, you might want to get evaluated for Marfans syndrome.

I havent looked into it too closely but I kinda wondered the same thing before. I have a really high palate and hyperflexable, a few other traits too. I dont know where I'd even go to get evaluated for something like that.

And yes it was a pneumothorax.

[rohrer01]

I havent looked into it too closely but I kinda wondered the same thing before. I have a really high palate and hyperflexable, a few other traits too. I dont know where I'd even go to get evaluated for something like that.

And yes it was a pneumothorax.

I think you can just go to your general practitioner. That is who evaluated my daughter for Marfan's.

[Pooka1]

I think you can just go to your general practitioner. That is who evaluated my daughter for Marfan's.

It is impossible for a GP to do anything more than do an initial evaluation and referral.

The only way you can get evaluated for Marfans is to visit a few specialists to see if you meet the diagnostic criteria.

The specialists you need to see include:

1. Opthamologist for a slit-lamp test for lens dislocation. This is done in a normal eye exam but you have to make sure they do it. Mention Marfans and the doctor will likely be famiiliar with it as it relates to eye issues.

2. Cardiologist to do an echo to see if you have any enlargement of the aortic root or any other valve issues. You may need to repeat this test as you may not show an enlarged aorta on one visit but may develop it in a few years for the next. You can never stop the echos (if you are at risk) because there is no maximum age at which aortic enlargemnent no longer can occur in association with Marfans although many people if they develop it will develop it in their 40s.

3. Orthopedic surgeon which you already have visited. You might want to ask specifically about Marfans and mention you had a spontaneous pneumothorax. He may order an MRI or some other imaging modality to see if you have any problem with your dura. That is also in the diagnostic criteria.

4. Medical geneticist who will do an extensive number of body measurements and other diagnostic tests in addition to analyzing your extended family history for signs of Marfans. You say you are hypermobile. That is one of the tests/criteria. About 25% of Marfans cases are spontaneous mutations so it doesn't matter if you have nobody else in your family with it.

I don't think you can rule out Marfans with anything less than visits (continued in some cases over your life) with all these specialists. Note that they may not agree on risk if you don't meet the criteria now. In my daughters' cases, the pediatrician and the orthopedic surgeon don't think they have Marfans but the pediatric cardiologist and the medical geneticist think they have enough indicators to warrant continued cardiac echos for the rest of their life.

You may meet the criteria now in which case you definitely need repeated echos. Catching the aortic dissection issue early is what has raised the average lifespan of Marfans patients from about half a normal life span to something close to that for the general population. It's the key thing. Early death due to Marfans aortic dissection is entirely avoidable.

[Davis]

I had a few surgeries when I was younger for bone cysts and wasn't allowed to play any of the sports in school or do anything physical like that because my DR at the time said that my bones were too "soft". It seemed like everytime I fell I would go to the ER and get x-rays and they would either find a fracture or a bone cyst. It sucked. Luckely, later on, he said I grew out of it and I was released to do anything I liked.

[Pooka1]

I had a few surgeries when I was younger for bone cysts and wasn't allowed to play any of the sports in school or do anything physical like that because my DR at the time said that my bones were too "soft". It seemed like everytime I fell I would go to the ER and get x-rays and they would either find a fracture or a bone cyst. It sucked. Luckely, later on, he said I grew out of it and I was released to do anything I liked.

I would add that history to your other history and present signs/symptoms and get a thorough evaluation from a medical geneticist. It would help to first have had the eye exam and echo cardiogram before you go. That's what I did... you don't need to be a rocket scientist to read about Marfans and figure out which tests you need. Then you take it all to the geneticist for the exam and history evaluation.

None of that other stuff will kill you. An aortic dissection, if you get that, might.

Good luck.

[Davis]

well, hope I don't get an aortic dissection. lol M tired n making light of it. Thanks a million for the info though. Hey, I wrote a punk rock song a long time ago called dissection ... yep I'm ubertired gahhhhhhhh bahhhh

[LisaB]

I am 3 1/2 weeks post op and had a posterior approach with no chest tube. I did have a central line. I think a chest tube is primarily used with the anterior approach when they have to deflate a lung. A few years ago I cracked a rib and ended up puncturing my lung and had to have a small chest tube put in then. I think it's a lung thing.

[junosand]

chest tubes and central lines

this may be more than you want to know but for the curious here goes; i'm a retired surgeon and i placed many of both of these kinds of lines and here is the difference:

1. a CENTRAL LINE is a large bore IV placed into either the jugular vein in the neck or in the subclavian vein underneath the clavicle (collar bone); they are used for a variety of purposes, mostly when a large volume needs to be infused or what is infused will irritate the vein walls and either hurt or occlude the smaller veins in the arms normally used for IVs (intravenous lines)

2. a CHEST TUBE is a tube placed into the pleural space (a potential space around the lungs that is normally collapsed but has slippery surfaces so the lungs can slide a little as they expand and contract with breathing); rather than infusing anything into the tube, it is rather used to drain air, blood or any other fluids there so that the space will collapse and thus allow the lung to fully expand

[Davis]

very informative, thanks for clarifying.