I am a 36year old female near Austin, TX with Marfan Syndrome, Pectus excavatum, Scoliosis, hyperthyroidism (assumed) and hypoglycemia (assumed, maintained with diet), and Asperger's. Doctors (Houston, TX) refused to repair my pectus when I was a young teen, stating it was only cosmetic, and would self-repair with proper posture.
Fast-forward to present day, at last measurement (2006), my scoliosis curve was a lateral 67degrees, with kyphosis, not sure what the measurement on my pectus was, but I have 1/4 of normal lung capacity and compression on my heart enough to cause a deformed chamber and floppy valve with murmer.
I agreed to the Nuss procedure by Dr. Richard Rouse, despite having previously been told (by Rouse's mentor) that I would need Ravitch. Rouse was certain Nuss would work, since I was "about the size of a child". I remained in the hospital for about a month post-op, due to complications of my lungs collapsing. After I was released, I had to go back in and have the bars adjusted, since they did not fit properly, the end-plates were too big, and I didn't have enough flesh to cover them. Also, the sutures opened up.
After the initial adjustment, the bars remained in for 2 years with no end-plates, until the bar-tips eroded through my skin, exposing the metal. The procedure only succeeded in giving me awkwardly-overlapping ribs, bone spurs on the ribs, nerve damage, and phantom pains from the chest tubes (I was sent home with a chest tube in for a month, connected to a valve and colostomy bag, because the lung would not stop leaking)
Both my scoliosis and pectus continue to worsen. I often experience chest pain, shortness of breath, and what feels like pinched tissue. I am unable to work due to my conditions, yet I cannot get disability since I don't get regular medical care, and have not worked enough to pay-in to the system, according to DI lawyers I have contacted. Since I have no employment, I am also unable to get any medical insurance. I cannot afford Obamacare, and Texas only offers "women's health care" (birth control) for non-pregnant adult females.
I've also been told the only option for my spine is to fuse it in it's current position, which I am opposed to, having known several other people who underwent spinal fusion. I'm not keen on becoming a morphine dependant for the rest of my life.
I already figure I may not live much longer in my current predicament the way it is going, but I have 3 children, the youngest is 6, so I need to try and do something. Are there any options for me at all? Or am I a lost cause because nothing was done earlier, and I have no insurance?
I am able to provide xrays, CTs, and photos upon request.
I just wanted to take the time to welcome you to the group. I'm so sorry for everything that you have been through. I don't see an easy option for you unfortunately. My only opinion would be to look into and contact Dr Jaroszewski at the Mayo Clinic in Phoenix. As far as no insurance I'm not really sure. I have heard of grants being an option for some, but you may want to look into that or maybe someone else here will have an idea. Please don't give up though and keep us updated with any progress that you make.
I'm sorry to hear you went through such a horrible operation. If you decide to pursue surgery, I agree with williams that a a surgeon with demonstrated success like Dr. Jaroszewski is your only option. I believe that PE especially symmetrical has the highest success rates. But even before going with a top doctor, you should keep your past experience in mind. I have had 3 operations and if I could go back, I would undo everything. My chest got worse with each one. Maybe a brace could help with your scoliosis. As far as securing health insurance, even with your physical limitations, I feel that employment would be the most sure-fire option. In my area there is a place called worksource where they try to help you find a job. It might be a longshot, but maybe they could help you find something to do from home. Regardless, I hope your life takes a positive turn.
Welcome to the group. I am sorry to hear about your complications. I am wondering if you are familiar with Rolfing? It was developed by a woman by the name of Ida Rolf who was a biochemist back in the 1930s. Rolfing is also called Structural Integration and the idea is that the fascia located just beneath the surface of the skin can be warmed up and moved. There are many books that show improvement of scoliosis. Though I am no doctor, I offer this as a potential avenue for you. Best of luck and do keep us posted on any options you come across that show some success.
Since my original post, I have had 5 spontaneous pneumothraces within a 5-month span, and was awarded disability (SSI). I now have Medicaid through disability, but still struggle with my health issues, and with medicaid denying services I need.
I was able to see a pulmonologist once my lungs started collapsing, he found that I have significant damage to my lungs, from the Nuss procedure. Excessive scarring, honeycomb lung formation, and other defects resulting from the pneomos. Apparently these areas can tear, causing leaks, which results in the pneumothorax. The worst one was Feb. 2017, both lungs were down 50%. I had recurrant pneumos in April, May, and 2 in June of that year.