newly diagnoses

How many of you that got a cancer diagnoises were told before you had surgery that you might have to spend the rest of your life feeling like you are being tortured. My bet would be that 95% of the surgeons preforming breast surgeries have never heard of POST MASTECTOMY PAIN SYNDROME and those that do refuse to tell their patients about it. Let me share a little of what I have to live with all because I had a surgeon how was uneducated and unable to diagnoise my symtoms. When I take a shower it feels like razor blades slicing into my chest, drying off is like being scrubed with sand paper,with every movement I make it is like someone is ripping the skin from my body it is like I am being tortured 24-7 I can not even take a breathe without the skin being ripped from my chest. At every turn I've been kick to the curb like a piece of trash. This has left me almost completely disabled I depend on my family for every thing because of the pain I'm sick all of the time I keep increasing the number of cans of pop I drink a day to keep above 100pds. Even quit driving for the most part besides not being able to stand the vibrations the pain has me holding my breathe I'm afraid that I will pass out. And to top it off after I had my surgery I got told by two differant doctors that I did not have cancer and now all off my mamograms have disappeared. Protect your selves get copies of everything and if you can also record every appointment so everything that is being done does not have to be questioned a $50 tape recorder verses your life. mind you these doctors are protected by the papers that you sign so you in turn should protect yourself. One more thing that you ladies need to know there is no help for you if this should happen to you. You can not recieve any disability or nothing if you are a housewife even though you can no longer do your work and if I would have to go back to work to cover my medical noone would hire me anyway One word of advice to all of you never be satisfied with their answers to your questions always demand more even if it causes them to have to do research to get your answer THEY WORK FOR YOU. You write their paycheck demand nothing but the best and if the arn't willing to give it to you you need to go elsewhere because they only want your money they don't have your best interest at heart they have no compassion. Ladies ask your doctors about the syndrome don't assume anything they don't know everything and if this happens to you, you will want a doctor that can make a diagnioses so you can get the treatments you need so you don't have to live the same way as so many of us do. Good luck to all who read this if any and remenber to ask your doctor. Starla

I had implants done after radiation. One week after they were inserted, one fell out! The surgeon proceeded to "fix" the problem by inseting smaller implants. I asked about having the Tram instead of having implants and he told me that surgery was completely unnecessary. Three months after the implants were inserted, I developed stabbing pain that was unbeable, going from the inside of my rib cage to the back of my ribs. The surgeon said there was nothing he could do. THe said this pain was generated by nerves regenerating. I went to a pain doctor who put me on Elavil and Dilaudin. This stopped the pain

Then I went on a search for a doctor who could help solve the problem. I had ten consults. I found a doctor was was recommended by everyone I spoke with and who was known as "The Fixer". He told me that the reason I was having the pain, was because the tissue had been radiated and was not plyable enough to hold the implants in place. He said implants should never have been done in the first place due to the condition of my skin. He recommended the DIEP/SIEA Tram.

This procedue scared me to death. It required between 13 to 15 hours to complete. I learned that he does wll over a hundred a year and spoke with many of his patients who all raved about him. They told me not to think twice and to have the procedure.

My doctor is so skilled..it took me almost six months to get a date for the surgery. The operation went well. I was home in three days. It is now almost 4 months after the operation. I have beautiful breasts that look like they are real.....and most importantly....no more pain!!!

I urge you to get second, thrid, forth and fifth opinions. You can be helped! 

 

Starla, I am sorry you are going thru so much pain and suffering. I think you need to find a new doctor. My surgeon was excellent. I had a double mastectomy and a year later when my cancer had gone into remission, I had started breast reconstruction. Do whatever you have to do to seek additional medical treatment. Contact the Cancer Treatment center closest to you for referrals and check them out. Get references. Surely there must be something they can do to stop the pain and suffering. There are a  lot of pain drugs on the market and one of them has to work for you. I was lucky. I did not suffer as you did. I still need to have surgery for the implants but I don't expect any problems. Thank you for warning us about this type of trauma. I wish you the best always!

Kathy in Ohio