Anyone diagnosed with “atypical connective tissue disorder"?”

Posted by basslakebabe19 @basslakebabe19, Oct 20, 2020

Has anyone been diagnosed with “atypical connective tissue disorder?”

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hi @basslakebabe19,
I also added this discussion to the Breast Cancer group. From your earlier messages on Connect, I understand that you were diagnosed with Connective Tissue Disease associated with having silicone breast implants after breast cancer surgery. Correct?
I found more information in this article
– Silicone gel breast implants and connective tissue https://healthcare-in-europe.com/en/news/silicone-gel-breast-implants-connective-tissue.html

If I understood the article correctly, the association of silicone breast implants with connective tissue diseases (CTDs) has led to the hypothesized new "atypical" disease, which does not meet established diagnostic criteria for any known CTD.

How were you diagnosed with atypical CTD? What are your symptoms? Are they similar to mixed connective tissue disease? Are you on any treatment to manage the symptoms or complications?

REPLY
@colleenyoung

Hi @basslakebabe19,
I also added this discussion to the Breast Cancer group. From your earlier messages on Connect, I understand that you were diagnosed with Connective Tissue Disease associated with having silicone breast implants after breast cancer surgery. Correct?
I found more information in this article
– Silicone gel breast implants and connective tissue https://healthcare-in-europe.com/en/news/silicone-gel-breast-implants-connective-tissue.html

If I understood the article correctly, the association of silicone breast implants with connective tissue diseases (CTDs) has led to the hypothesized new "atypical" disease, which does not meet established diagnostic criteria for any known CTD.

How were you diagnosed with atypical CTD? What are your symptoms? Are they similar to mixed connective tissue disease? Are you on any treatment to manage the symptoms or complications?

Jump to this post

The diagnosis came in the late ‘90’ s when I was filing for the Dow Corning settlement. While it took over ten years to settle, I fit “their” criteria for atypical connective tissue disorder. Believe me, it was quite an extensive process. I had to meet so many medically substantiated diagnoses that I was kept quite busy. Many symptoms, but that was decades ago. Mainly the silicone spill affected my tendons, especially in my shoulders. I lost both rotator cuff muscles, leaving nothing left to hook them up to. The tendons just dissolved. That lead to reverse shoulder replacement surgeries decades later. (Thank you, Dr. Sperling) I also lost the tendons in my right arch. The surgeon removed toe tendons to make new ones for the foot. There were numerous other conditions which are too lengthy to explain. My diagnosis came from the main expert in silicone disease in the ‘90’s ( who performed the explanation in the ‘90’s) and knew exactly what blood tests and MRI’ S to have. I had all the supporting info for the Dow Corning Settlement . Believe me, that was tough; they created an entire booklet with requirements to meet and document. I was my own attorney as no one wanted the case back then. It’s been a long journey. The silicone cannot be completely eradicated. I just try to lead as healthy a life as I can and address issues as they pop up….such as a recent biopsy which revealed a pre- cancerous lesion.
I just read the article from the link you posted, and yes, I was also diagnosed with Sjogren syndrome, fibromyalgia, and many others which I can no longer even remember. I just burned all the records yesterday as I have put this dark period behind me. I am a survivor; that is all I need to know.

REPLY
@basslakebabe19

The diagnosis came in the late ‘90’ s when I was filing for the Dow Corning settlement. While it took over ten years to settle, I fit “their” criteria for atypical connective tissue disorder. Believe me, it was quite an extensive process. I had to meet so many medically substantiated diagnoses that I was kept quite busy. Many symptoms, but that was decades ago. Mainly the silicone spill affected my tendons, especially in my shoulders. I lost both rotator cuff muscles, leaving nothing left to hook them up to. The tendons just dissolved. That lead to reverse shoulder replacement surgeries decades later. (Thank you, Dr. Sperling) I also lost the tendons in my right arch. The surgeon removed toe tendons to make new ones for the foot. There were numerous other conditions which are too lengthy to explain. My diagnosis came from the main expert in silicone disease in the ‘90’s ( who performed the explanation in the ‘90’s) and knew exactly what blood tests and MRI’ S to have. I had all the supporting info for the Dow Corning Settlement . Believe me, that was tough; they created an entire booklet with requirements to meet and document. I was my own attorney as no one wanted the case back then. It’s been a long journey. The silicone cannot be completely eradicated. I just try to lead as healthy a life as I can and address issues as they pop up….such as a recent biopsy which revealed a pre- cancerous lesion.
I just read the article from the link you posted, and yes, I was also diagnosed with Sjogren syndrome, fibromyalgia, and many others which I can no longer even remember. I just burned all the records yesterday as I have put this dark period behind me. I am a survivor; that is all I need to know.

Jump to this post

That is quite the journey, @basslakebabe19. I'm sure you learned many skills and loads of information that you wish you never had to learn. Congrats on the burning and purging, and forward with surviving and thriving.

REPLY

The really unusual thing happened when I wrote to the FDA in the ‘90’s about any organizations that existed as support groups. They were not able to help me, but they put my name on their web site as a “ support group leader.” I was shocked….I started getting calls from all around the area. I usually met with the women for lunch, asked the right questions based on my experience, and tried to help In Any way possible. It was an interesting time. I will never forget one example; a friend’s daughter had breast cancer and wanted to be implanted right away in the same surgery. The Dr that I saw, the Expert in Silicone disease, said NEVER implant until the healing from the cancer is COMPLETED as the body cannot deal with the foreign body when trying to heal. The daughter told her mom, my friend, that she believed in her doctor, and that she was in a “study.” She felt perfectly safe. I told her mom that all a study did was keep track of who lived and who died back then. She proceeded with the implant and died within a few months. That didn’t have to happen. Thus I became an activist.

REPLY
@colleenyoung

Hi @basslakebabe19,
I also added this discussion to the Breast Cancer group. From your earlier messages on Connect, I understand that you were diagnosed with Connective Tissue Disease associated with having silicone breast implants after breast cancer surgery. Correct?
I found more information in this article
– Silicone gel breast implants and connective tissue https://healthcare-in-europe.com/en/news/silicone-gel-breast-implants-connective-tissue.html

If I understood the article correctly, the association of silicone breast implants with connective tissue diseases (CTDs) has led to the hypothesized new "atypical" disease, which does not meet established diagnostic criteria for any known CTD.

How were you diagnosed with atypical CTD? What are your symptoms? Are they similar to mixed connective tissue disease? Are you on any treatment to manage the symptoms or complications?

Jump to this post

In 1985 I got breast implants, silicone. I was never sick a day in my life before this. A year after I got the implants, all of the hair on my body fell out and my kids had to take care of me. I was diagnosed with 40 diseases that were silicone related. One of them was connective tissue disease. At the time I had no idea what it was. Now at almost 64 I am fully aware of what this disease is and how it makes you feel. Those breast implant ruined my life and I have so much pain right now and no way to get rid of it because surgery doesn't help. It's too much.

REPLY
@cvsnow

In 1985 I got breast implants, silicone. I was never sick a day in my life before this. A year after I got the implants, all of the hair on my body fell out and my kids had to take care of me. I was diagnosed with 40 diseases that were silicone related. One of them was connective tissue disease. At the time I had no idea what it was. Now at almost 64 I am fully aware of what this disease is and how it makes you feel. Those breast implant ruined my life and I have so much pain right now and no way to get rid of it because surgery doesn't help. It's too much.

Jump to this post

Hi, @cvsnow you had breast implants and are now diagnosed with 40 diseases that are related to the silicon? Correct? How awful. I’m hoping you have a good doctor who is treating you! You also say you’re in a lot of pain, but surgery doesn’t help. Are you referring to surgery to remove the implants and get the silicon out of your body? Gosh, I’ve got so many questions, but I don’t want to overload you!
Can you tell me a little more about yourself and these diseases you’ve developed?

REPLY
@becsbuddy

Hi, @cvsnow you had breast implants and are now diagnosed with 40 diseases that are related to the silicon? Correct? How awful. I’m hoping you have a good doctor who is treating you! You also say you’re in a lot of pain, but surgery doesn’t help. Are you referring to surgery to remove the implants and get the silicon out of your body? Gosh, I’ve got so many questions, but I don’t want to overload you!
Can you tell me a little more about yourself and these diseases you’ve developed?

Jump to this post

I'm sorry I didn't clarify. The implants were removed in 1993 in an emergency surgery because I had bronchial pneumonia for 7 months. It was either I die in the surgery or die from the implants. The connective tissue disease causes all of your ligaments and tendons to tear. 3 months ago I had my medial meniscus fixed but now my knee is bone on bone. These ligaments and tendons will just continue tearing because of the disease. Both of my shoulders are basically hanging there. I don't know how else to describe it. I can go in and have my ligaments and tendons fixed but in a few months they're just going to tear again. It's kind of painful. What about you?

REPLY
@cvsnow

I'm sorry I didn't clarify. The implants were removed in 1993 in an emergency surgery because I had bronchial pneumonia for 7 months. It was either I die in the surgery or die from the implants. The connective tissue disease causes all of your ligaments and tendons to tear. 3 months ago I had my medial meniscus fixed but now my knee is bone on bone. These ligaments and tendons will just continue tearing because of the disease. Both of my shoulders are basically hanging there. I don't know how else to describe it. I can go in and have my ligaments and tendons fixed but in a few months they're just going to tear again. It's kind of painful. What about you?

Jump to this post

I cannot imagine the pain you face each day. I have a friend who deals with this, she does try to have a life anyway. She comes to the barn a few times per month even though she has given up her own horses. She spends time with mine.
My heart breaks every time I hear about this, and I think about how they always say, “we fixed this problem” but truly there is always a risk with implants, even if the risks have changed. If women truly understood the risks, I think a lot less of them would opt in.
Is there anything that makes this problem a little better in your day to day? Have any interventions been tried, other than surgical?

REPLY
@auntieoakley

I cannot imagine the pain you face each day. I have a friend who deals with this, she does try to have a life anyway. She comes to the barn a few times per month even though she has given up her own horses. She spends time with mine.
My heart breaks every time I hear about this, and I think about how they always say, “we fixed this problem” but truly there is always a risk with implants, even if the risks have changed. If women truly understood the risks, I think a lot less of them would opt in.
Is there anything that makes this problem a little better in your day to day? Have any interventions been tried, other than surgical?

Jump to this post

There is something called prolozone or Prolotherapy. Instead of the harmful junk in most of those injections to relieve pain, this is liquid oxygen that actually helps regenerate. Of course there's no money in a cure so most insurance companies don't cover things that are good for you. I did find a doctor that does this treatment and my insurance does cover it. Fingers crossed.

REPLY
@cvsnow

There is something called prolozone or Prolotherapy. Instead of the harmful junk in most of those injections to relieve pain, this is liquid oxygen that actually helps regenerate. Of course there's no money in a cure so most insurance companies don't cover things that are good for you. I did find a doctor that does this treatment and my insurance does cover it. Fingers crossed.

Jump to this post

Mayo Clinic’s Brent A. Bauer, M.D. offer this information on prolotherapy: https://www.mayoclinic.org/prolotherapy/expert-answers/faq-20058347
“Prolotherapy is a complementary treatment for muscle and joint pain. The treatment involves repeated injections of an irritant solution into part of a joint — the joint's interior, for example, or a supporting tendon or ligament. The irritant, usually a sugar solution, is thought to trigger growth in the connective tissue of the joint, eventually leading to reduced pain.

Studies of prolotherapy in people with pain have had mixed results. A combination of prolotherapy and spinal manipulation or back exercises seems to be more effective than is prolotherapy alone.

The American Pain Society recommends against prolotherapy for treating low back pain, but other authorities are suspending judgment until larger, more-thorough studies have been done. Until then, talk to your doctor before deciding whether prolotherapy is right for you.”

REPLY
Please sign in or register to post a reply.