Didn't know where to post this, so if a mod wants to move it to appropriate place, I have no problem. Just wanted to give the gals a heads up on something that could REALLY make a differnce in someone's life.

A little background so you know that I am speaking from experience. Back in 2005, I went to my Dr. several times for pain in my neck and base of skull. He attributed it to a couple of old whiplashes I'd had and put me on muscle relaxers, pain meds., etc. Wasn't helping, so took an x-ray, said I had a "crushed" vertabra (sp) in my neck, so sent me to physical therapy. Went there a few times a week for several months. One time had a new gal. She was concerned about some lumps in my neck. So I went to primary care Dr. He said it wasn't a big deal, just some lymph glands, was common. Well, a few months later, those lumps started hurting and was still having excrutiating pain base of skull. So was sent to ENT. He had me go in for an MRI and CT-Scan the very next day. One day later, ENT guy calls back and says looks bad, he had me make an emergency appt. at OHSU (Oregon Health Science University). They did a biopsy on the neck lumps and determined it was lung cancer that had metastized(sp) to the lymph glands and cancer was eating away at my skull! One thing he DID point out to a student was the shape of my fingernails. They are "normal" to me. Aren't ugly, just different in the fact that my nails, from the nailbed, are curved instead of being flat. It's called clubbed fingers and is indicative to either heart or lung disease. Here is what clubbed fingers look like. http://www.nlm.nih.gov/medlineplus/e...size/18127.jpg
Wish I'd known there was a coorelation between my nails and my health. I went thru radiation for the cancer eating away at my skull and THINK they caught it before I lost TOO many brain cells. That was Feb. 2006. Was given 9 - 12 months with how advanced it all was. Well, I'm still kicking, tho still going thru chemo. I was recently thinking of having my first time ever manicure, but my blood counts were low last check up so wasn't a good idea. That is what reminded me about that first appt. when the "C" word was positive. I thought that others should know to watch their fingernails and those of their loved ones. If you notice someones nails are even just a bit curved from the nailbed, might be a good idea to have it checked. The sooner its caught, the better. Feel free to pass this info onto other boards you may belong to. The more who know something so simple to watch for, it may help out just one or two. That's my hope, anyway.

Wow - what an ordeal you've had! Thanks for sharing the information. I never knew about this.

Good luck. Sounds like you're on the mend!

thanks for sharing with us, I hope that you are doing better!

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I lost a parent to a lung disease, and that was definitely a symptom we watched progress as the disease progressed. If I recall correctly, it's due to poor oxygenation in the furthest places blood has to travel away from the heart and lungs.

OP, I'm so sorry you've had this ordeal, and hope that in fact there is more hope than they initially gave you!

I have a friend who has the clubbed fingers... I also knew a little girl that I taught years ago who has clubbed fingers. I keep in touch with her and they haven't changed!

Isn't this oftentimes a genetic trait?

Please educate us.

I am sorry for what you are going through. It does sound as though you are holding up well. You will be in my thoughts.

Clubbed fingers is associated with certain genetic heart diseases. I work in Cardiology and have seen this. The genetic trait for this also is a genetic heart disease. Marfan's is one of them if you want to look it up.

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In my dad's situation, his fingers became clubbed as a result of his pulmonary condition - they had not always been that way.

crzy4cpns, is the association with Marfans related to aortic root dilation/blood flow issues? Do Marfan patients tend to be born with them, or do they develop over time as the poor connective tissue causes increasingly serious cardic trouble?

Wow! I'm so glad that you are doing well. With the information that you have shared with us, you may have saved a few lives.
Thank you, and I'm sending warm hugs your way!!

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Donna

Wow! Thanks for sharing that information. I hope that things are looking up, and that things are stable for a while!

thns for the heads up

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Yes, that is what Marfan's is. It is a genetic connective tissue disorder that causes weakening of the wall of the aorta. I'm not sure if they are born with the clubbing, but they probably are because alot of times they will have clubbed fingers even before they start having any heart problems start. I think there is a genetic blood test for it though.

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Thanks for sharing, especially with all else that is going on in your life. You will be added to my prayer list.

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I'm doing ok. Had a port "installed" in my chest last year, is how they administer my "cocktail". First it was taxol. Worst part of that one was sitting there for 5 - 6 hours in that uncomfortable recliner. Talk about TB!! (tired butt) Did go hairless, but that really isn't that bad. I didn't have to shave my legs or armpits for a long time!Found some fun hats and pins to wear, too! Was strange not having eyelashes or eyebrows, tho. Since then, my cocktails have been alimta, navelbine, and at the moment gemzar. I use oxygen when am at home, but I still get out and about. I just make sure places I go have scooters as walking too far exhausts me. Haven't run over anyone with one yet, but am going to Las Vegas for first time ever next month. Folks there might want to increase their insurance from runaway scooters! On a serious note, the Dr. did say a month or so ago that I should start looking into hospice care places. Bet they won't let me have my couple beers a night, tho. Bummer!!

Thanks, crzy. There was a concern that one of our children had Marfans at one time, and we went through pretty extensive testing. It was determined that it wasn't Marfans after all, as a number of the key markers for Marfans were not present. I remember my dad's fingers getting clubbed, and they were not that way until his disease process set in. With my son, they are not clubbed at all. Tests initially showed a dilated aortic root, but a transesophogeal echocardiogram ultimately determined it's fine. No dural ectasia, etc... so in the end, despite some key similarities w/Marfan, they decided it's some other connective tissue disorder. E-D was also a possibility, but that is no longer considered likely, either.

OP, I'm so sorry you've had this ordeal, and that it wasn't diagnosed sooner!

Glad to hear it wasn't Marfan's. I actually perform echocardiograms for a living. Have been doing it for 15 years now.

So sorry about OP health. It always seems these things should be caught sooner. Not always. Best wishes for you. And if you go into hospice care, make them let you have your beers. I see no reason not to let you.

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As pasm8's older sister I want to add a note as I have run into this thread fro "long ago". Jackie passed away March 2008 from cancer after a hard fought battle. She was just one week shy of reaching her 50th birthday. Since that time I have been diagnosed with lung cancer. We caught it early, had the top lobe of my lung removed and didn't have any chemo or radiation. One year later, July 2011 I had my right breast removed due to cancer. I had always had my mammo's regularly. I am 55.

Please everyone, listen to changes in your bodies and get checked on time for your yearly physicals if you feel anything unordinary going on.
Debbie

Oh my gosh, Debbie I am so very sorry to hear about you and Jackie. Stay strong.

I know a bit what you are going thru. I lost my 31 year old sister to breast cancer July 2010. Her 12 year old daughter lives with us now as both her parents are gone. My DH was sick as she neared the end. He was diagnosed with a rare cancer. He had to have 2 back to back bone marrow transplants. Right now he is doing well.

I know the pain of losing a sister. Do you have a good support system around you and good medical care? Please know that you aren't alone and I'll keep you in my prayers. Sending good karma and hugs your way. Life can be so hard at times.

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I am so sorry for your loss.

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After my brother suddenly passed away from an aortic aneurysm in 2004, it was determined that he had Marfans.... his fingers were not clubbed but he did have some of the other symptoms.....long limbs and even though my father and mother are no taller than 5'6" and the four sisters are around 5'2" he stood about 6 foot which is extremely tall for our family. His son has also been diagnosed with Marfan's and is on medication for it and has regular doctors visits to monitor the situation. All of my sisters and I have had echos to determine our risk factor as well.

I agree with the idea to see a doctor if there is any change whatsoever in your health asap. My brother and his wife were good friends with John Ritter and his wife and he had some health issues of pain for a bit before he died and my brother had an upper back ache the day before his death and both were ignored. My sister in law and John's wife were active in promoting the knowledge in emergency rooms in the LA area to the symptoms of aortic and abdominal aneurysms because they are often misdiagnosed and fatal but can be helped if caught early. My brother passed away in minutes but John Ritter went to the emergency room once before he had a massive abruption and passed away.

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