Back pain

When i had my Scoliosis surgery back in 2001 sadly I was told that this is something i was told i would have to deal with for the rest of my life. Bad posture , unhealthy life style and lack of exercise in the past years have only compounded the problem. Two years ago i decided i had had enough and went to my GP. He in turn sent me to a Neurologist. Upon stepping foot into the Neurologists office he told me he wanted me to do 6 weeks of PT prior to him saying anything else. I rolled my eyes as i have been though PT before and wanted a second opinion (something you should always ask for when it comes to medicine). I decided to go see a Orthopedic surgeon , he in turn told me the same thing. I walked away thinking the crock doctors don't want to look at me and only brush me off. 

Shortly after my run in with the doctors i found out i needed to have my Mitral valve repaired (this is a story for another day). After my surgery i went to PT for my heart for 9 weeks and felt rather healthy. The day to day back pain had all but faded away. In October i started to feel a chest cold coming on so i took an anti biotic that i had left over and it faded away. After about a week or two i started to feel really bad, so bad i stayed home from work one day. Mandy made a deal with me i could stay home from work but i had to make an appointment to go see the GP. Whenever i showed up to the GP it was getting hard to breath without being hunched over. The pain became so great that by the time the doctor finally got around to seeing me he told me i had to go to the hospital. I asked the Dr what hospital should i go to he laughed and said your not going anywhere we can call an ambulance for you or you can have someone take you. Through the pain called my wife and had her pick me up and take me to RR hospital. She didn't realize how much pain i was in till she arrived at the Dr office. After a few hours the Dr on call diagnosed me with Chest pain and Pleurisy. The ER sent me home and on my way, a little after a week later Mandy and i were headed to Houston to visit family when i had another episode. This time the pain meds they gave me would not subdue the pain in my chest we were forced to call an ambulance.

After all of this was said and done my back pain had arrived back again. Oh how i thought i had gotten rid of you, i dealt with the pain for a couple of months before going back to the GP due to lack of sleep/ability to sit at my desk. He refered me back to the Neurologist who in turn gave me a prescription for physical therapy again. This time i went with it and found a place close to work. I happened upon Hands on Physical therapy.  They are not your normal teradmill/weight physical therapy place. As their website puts it

"Hands-On Manual Therapy, Trigger Point, Myofascial Therapy, Manipulation, Expert Guidance and Individualized Exercises that the physical therapist provides in one-to-one sessions." 

I have had Myofascial massages before but not Therapy so this is new to me. I go for an hour session once to twice a week. I have been for 5 sessions and i can tell you this if anything it is making me more aware of my bad posture and habits (sitting on my feet at work). In addition to this i have started the biggest looser Wii game to try and strengthen my core. I say start because i have only done one session however yesterday i did about 2.5 hours of house work leaving my brow sweaty and my knees week. Hopefully i will have an update later this year telling you my back pain is now gone. 

Why am i a Mutant?

I am not talking about X-men Mutants or Peter Parker from spider man who was bitten by a radio active spider. I am talking about a gene that mutates spontaneously without reason. 


medline plus states
"In most cases, Marfan syndrome is inherited, which means it is passed down through families. However, up to 30% of cases have no family history. Such cases are called "sporadic." In sporadic cases, the syndrome is believed to result from a spontaneous new gene defect."


So from that description you can see i am a Mutant. Being a mutant isn't all that bad however it doesn't come with all the comic book benefits. I cant climb on walls or shoot laser beams from my eyes. 


Some back ground info on me I was born October 12, 1985 in the middle of the Texas OU football game. 
Throughout my younger years my mother fought with the doctors for a diagnosis for myself. Finally when i was 7 my mother found someone who diagnosed me with Marfans Syndrome.  No one else in our family has Marfans that we know of however my mothers father died at an early age before i was born so he was not able to be tested. 


Marfans has several traits.

Skeletal system

"Most of the readily visible signs are associated with the skeletal system. Many individuals with Marfan syndrome grow to above average height. Some have long slender limbs with long fingers and toes (arachnodactyly). This condition of elongated limbs is known as dolichostenomelia. An individual's arms may be disproportionately long, with thin, weak wrists. In addition to affecting height and limb proportions, Marfan syndrome can produce other skeletal anomalies. "

Abnormal curvature of the spine (scoliosis) is common.

I had surgery in 2000 to correct the 70* Curve in my spine. 

Also common is abnormal indentation (pectus excavatum) (I had surgery in 1995, they went into my chest cavity and retrieved my sternum and brought it to the front.) 

or protrusion (pectus carinatum) of the sternum. Other signs include abnormal joint flexibility, a high palate, malocclusions, flat feet, hammer toes, stooped shoulders, unexplained stretch marks on the skin. It can also cause pain in the joints, bones and muscles in some patients. Some people with Marfan have speech disordersresulting from symptomatic high palates and small jaws. Early osteoarthritis may occur.

Eyes

I have yet to have any problems with my eyes yet however i get my eyes checked every year for the eye problem. 

Marfan syndrome can also seriously affect the eyes and vision. Nearsightedness and astigmatism are common, but farsightedness can also result. Subluxation (dislocation) of the crystalline lens in one or both eyes (ectopia lentis) (in 80% of patients) also occurs and may be detected by an ophthalmologist or optometrist using a slit-lamp biomicroscope. In Marfan's the dislocation is typically superotemporal whereas in the similar condition homocystinuria, the dislocation is inferonasal. Sometimes eye problems appear only after the weakening of connective tissue has caused detachment of the retina.^[9] Early onset glaucoma can be another related problem.

Cardiovascular system

I go in bi-yearly to get echocardiogram to check on my Mitral Valve and Aorta root. Growing up with this i was unable to play contact sports for fear that if i got hit at the right time my valve would have a rush of blood and pop. 

Febuarry 24 2010 I underwent Mitral Valve repair surgery. I was in CCU for 5 days then 1 day in general recovery + 9 weeks of recovery.

he most serious signs and symptoms associated with Marfan syndrome involve the cardiovascular system. Undue fatigue, shortness of breath, heart palpitations, racing heartbeats, or Angina pectoris with pain radiating to the back, shoulder, or arm. Cold arms, hands and feet can also be linked to Marfan's syndrome because of inadequate circulation. A heart murmur, abnormal reading on an EKG, or symptoms ofangina can indicate further investigation. The signs of regurgitation from prolapse of the mitral or aortic valves (which control the flow of blood through the heart) result from cystic medial degeneration of the valves which is commonly associated with Marfan's syndrome (see mitral valve prolapse, aortic regurgitation). However, the major sign that would lead a doctor to consider an underlying condition is a dilated aorta or an aortic aneurysm. Sometimes, no heart problems are apparent until the weakening of the connective tissue (cystic medial degeneration) in the ascending aorta causes an aortic aneurysm or aortic dissection, a surgical emergency. An aortic dissection is most often fatal and presents with pain radiating down the back, giving a tearing sensation.

Because of the underlying connective tissue abnormalities that cause Marfan syndrome, there is an increased incidence of dehiscence of prosthetic mitral valve.^[10] Care should be taken to attempt repair of damaged heart valves rather than replacement.

During pregnancy, even in the absence of preconceived cardiovascular abnormality, women with Marfan syndrome are at significant risk of aortic dissection, which is often fatal even when rapidly treated. For this reason, women with Marfan syndrome should receive a thorough assessment prior to conception, and echocardiography should be performed every six to ten weeks during pregnancy, to assess the aortic root diameter. For most women, safe vaginal delivery is possible.^[11]

Lungs

I get Walking pneumonia almost once a year like clockwork at the end of the old year and beginning of the new.  This year God was good to me and figured id had been through enough. 

Marfan syndrome is a risk factor for spontaneous pneumothorax. In spontaneous unilateral pneumothorax, air escapes from a lung and occupies the pleural space between the chest wall and a lung. The lung becomes partially compressed or collapsed. This can cause pain, shortness of breath, cyanosis, and, if not treated, death. Marfan syndrome has also been associated with sleep apnea and idiopathic obstructive lung disease.

Central nervous system

So far i do not have any Central Nervous system symptoms and pray i do not have them. 

Another condition that can reduce the quality of life for an individual, though not life-threatening, is dural ectasia, the weakening of the connective tissue of the dural sac, the membrane that encases the spinal cord. Dural ectasia can be present for a long time without producing any noticeable symptoms. Symptoms that can occur are lower back pain, leg pain,abdominal pain, other neurological symptoms in the lower extremities, or headaches. Such symptoms usually diminish when the individual lies flat on his or her back. These types of symptoms might lead a doctor to order an X-ray of the lower spine. Dural ectasia is usually not visible on an X-ray in the early phases. A worsening of symptoms and the lack of finding any other cause should eventually lead a doctor to order an upright MRI of the lower spine. Dural ectasia that has progressed to the point of causing these symptoms would appear in an upright MRI image as a dilated pouch that is wearing away at the lumbar vertebrae.^[9] Other spinal issues associated with Marfan include degenerative disk disease and spinal cysts. Marfan syndrome is also associated with dysautonomia.

Historical figures The diagnosis of Marfan syndrome was not available until well into the 20th century, but there has been speculation on whether historical figures may have had it, based on sparse medical records, descriptions, and images. The ancient figure Akhenaten, an Egyptian pharaoh, was once believed to have had Marfan Syndrome based on his image in early Amarna art, however, this was disproven by forensic tests in 2010. Musicians and composers Niccolò Paganini, Sergei Rachmaninoff, and Robert Johnson are thought by some to have had the disease. Abraham Lincoln may or may not have had Marfan's syndrome, although he undoubtedly had some of the normal characteristic features. According to a 2007 theory, it is perhaps more likely that he had a different disorder, multiple endocrine neoplasia type 2B, that caused skeletal features almost identical to Marfan syndrome.

Now that you know where i come from you can see where im going. 

Pregnancy and Reproduction

Couples considering pregnancy are advised to understand how Marfan syndrome is inherited in families so they know the risk of having a child with the disorder.  If either parent is affected, each pregnancy has a 50-50 chance of producing an affected child.  In addition, affected women considering pregnancy should understand the medical risks and special care needed to manage a pregnancy. The following are common questions to consider regarding pregnancy and Marfan syndrome:

Information taken from  http://en.wikipedia.org/wiki/Marfan_syndrome , www.marfan.org

First post

So before i start posting there are a few things you should know.
One, I am not a good speller.
Two, I have no scene of grammar what so ever.
Three, I still love to express myself through type.