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suggi's Message Board Messages

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On Mar 14, 2019 7:31 PM suggi wrote:

UPDATE - I have found some very interesting articles re our problems.  However it is OLD (1994).  There was a Submarine Surviors group , quincy, MA taking calls from citizens radiated as kids as well as military folk.  I found a tel # but it is disconnected and can not find Submarine Survivors anymore.  They were attempting to get compensation for our troubles.  Seattle Times interviewed citizen Lisa mandel of manchester, CT who was 38 at the time so should be62 or so now.  Tried to find her but was unsuccessful - used Anywho tel dirctory.  If anyone wants to followup on this please do.  James Garrity was heading up the project.  IF LISA MANDEL OR JAMES GARRITY IS OUT THERE AND SEES THIS POST PLEASE GET IN TOUCH HERE. For everyone else, hopfully someone can dig deeper than I could.  Here is the articlle: community.seattletimes.nwsource.com "" target="_blank" rel="nofollow">http://community.seattletimes.nwsource.com " target="_blank" rel="nofollow">community.seattletimes.nwsource.com /archive/?date=19940612&slug=1915268

Hoping someone will respond.  Thank you.

I did try the other person listed in the article, Judith Wood in CT but apparently it is not her so again - a dead end.

UPDATE - I have found some very interesting articles re our problems.  However it is OLD (1994).  There was a Submarine Surviors group , quincy, MA taking calls from citizens radiated as kids as well as military folk.  I found a tel # but it is disconnected and can not find Submarine Survivors anymore.  They were attempting to get compensation for our troubles.  Seattle Times interviewed citizen Lisa mandel of manchester, CT who was 38 at the time so should be62 or so now.  Tried to find her but was unsuccessful - used Anywho tel dirctory.  If anyone wants to followup on this please do.  James Garrity was heading up the project.  IF LISA MANDEL OR JAMES GARRITY IS OUT THERE AND SEES THIS POST PLEASE GET IN TOUCH HERE. For everyone else, hopfully someone can dig deeper than I could.  Here is the articlle: community.seattletimes.nwsource.com /archive/?date=19940612&slug=1915268

Hoping someone will respond.  Thank you.

On Oct 05, 2018 8:16 PM suggi wrote:

I found something interesting and am posting the link to it.  They are finally admitting killing off the thymus gland as a child is the reason behind lots of medical problems.  However, they are only discussing surgery and not radiation but killing off the thyroid is still killing off the thyroid no matter how it is done.

https://www.verywellhealth.com/thyroid-disease-after-thymus- removal-4159741?utm_campaign=list_thyroid&utm_medium=email&utm_source=cn_nl&utm_content=14626456&utm_term=bouncex31v"" target="_blank" rel="nofollow">https://www.verywellhealth.com/thyroid-disease-after-thymus- target="_blank" rel="nofollow">https://www.verywellhealth.com/thyroid-disease-after-thymus-

Thoughts please????

Very interesting. I am now without a thyroid as developed Graves disease in Jan 2017 and had to have RAI todestroy it as I was in thyroid storm before it was diagnosed.  Unhappy since as can't get my replacement med right.  Also had breast cancer, skin cancer, Crohns disease, severe scoliosis squishing my lungs, severe osteoporosisetc.  I think the radiation which was unmeasured cobalt that I received 2 times and actually killed off my thymus instead of shrinking it is the cause of many of my probloems.  I am still here but in poor health.  A friend of mine who was radiated died of thyroid cancer.  Autoimmune disease does not run in my family and now I have 2 of them plus my bones and spine are bad.  Docs feel there is a connection.

I found something interesting and am posting the link to it.  They are finally admitting killing off the thymus gland as a child is the reason behind lots of medical problems.  However, they are only discussing surgery and not radiation but killing off the thyroid is still killing off the thyroid no matter how it is done.

https://www.verywellhealth.com/thyroid-disease-after-thymus-

Thoughts please????

On Apr 14, 2015 12:47 AM lamaj wrote:

I may be the oldest responders. I was born in 1938. My mother said that I made a lot of snoring noises when asleep. The doctor at a well known Philadelphia hospital said that my thymus was enlarged and that I needed radiation to shrink it. The doctors should have known that ALL babies have an enlarged thymus.

I now have hypothyroidism, I am pre -diabetic, and have a neuromuscular disorder unknown what or why. Basil cell cancer from sun and other rashes. I have double vision, hearing loss,andmouth sores.

have some sort of 

lamaj - how are you doing.  I was born in 1938 also and had the radioactive iodine pill for severe yperthyroidism undiagnosed so it affected my heart) and now am hypo.  Had breast cancer, have many allergies to meds, pollen, etc., basal cell cancer, osteoporosis, severe scoliosis affecting my breathing, all connected to being radiated 2x back in the day.

Hope you are still hanging in there as that is all we have is hope.  Too bad we cant be compensated for what they did to us. The pediatrician told my Mother when I was 10 that I would probably be dead by age 16 and if I did live to adulthood my kids would be deformed.  She neglected to tell me this until she was well in her 90s and my children are not deformed but those docs realized what they had done and really something should be done for us.  Yu just never know what is just around thecorner for us.

Hope you are well.

I have posted before - radiated as an infant and again a litttle older because I could not eat.  They radiated me to get rid of the scar tissue from the first round so that I could eat..  Besides the breast cancer, thyroid nodules,precancderous lesions on my pancreas, severe case of hyperthyroidism (had tohave radioactive iodine pill to reverse it), I now have developed severe scoliosis from a degenerating spine and osteoporosis and having trouble swallowing, breathing.  Not a candidate for surgery as the screws would not hold and can not stop the progression.  I am looking at  a feeding tube and a trachea down the road a bit.  Makes it hard when you can't swallow food, water, etc. - aspiration pneumonia.  My left lung is now half the size of the right lung due to the diaphragm pushing up into my lung and also across (S shaped scoliosis).  Also am allergic to most medications as I use them including antibiotics and have only a choice between 2 that are left and they expect me to become allergic to them also.

What they did to us is terrible and I would not wish the consequences on anyhone. A friend of mine passed away a few years back from thyroid cancer due to infant radiation.  And then I got the breast cancer.   We thought at our ages we would be 2 of the lucky ones who escaped the evils of infant radiation but I guess in the end it will get you one way or the other.  I am now 79.

I have had problems with sore "throat" in the hollow of my neck from silent reflux for many years and my local ENT had said it was a GI doc problem as he could not see below the top of the voice box but saw acid splash there and I had an endoscopy done at that time by the GI doc who said that area was an ENT area???  No one really seemed to care.  Now it has escalated very much where I am hoarse, very sore in that area, a cough that hits there, and some difficulty swallowing.  I have been on Prevacid and Zantac all this time which obviously has not helpedand  

I would rather go to Brighams if possible as MGH is harder for me to get to but if I do not have a choice I would like a couple of doctors names at both.  I am 78 and my local docs are just not any help if you know what I mean. 

Thank you for any recommendations.  I am a breast cancer survivor, mastectomy with a local suegeon who has since left so can not get a recommendation from her.  Oncologist went into research. Most of my docs hve either retired or moved on and I feel a bit lost.  Thanks again for any help.

Also does anyone know anything about Dr Timothy Anderson at Lahey in Burlington ENT for maybe a start - if I could even get in.

Hey thanks for replying.....I have seen a GI doc at Brighams a couple of times now and she is eally nice but they all basically say the same thing....colonoscopy since I have not had one - hemmoraging, then no looksie, just ended up on Prednisone for a year and many rigid sigmoids.  I just want an upper at this point and worry about the lower later but I would like someone rcommended if not her and I don't think you can just go to another doc in the same gastro group.  Did not like any at my local hospital as tried one there before the swllowing problem and worsening of SOB and she just about dismissed me saying come back when you want the colonoscopy...so getting my Prevacid, Zantac and Librax from my PCP.

So, it seems Dr. Bueno is the go to surgeon for the esophagus.  What is he like, I mean would he have patience for someone with a million drig and contrast allergies?  However, I have to start with a GI doc.  I kinda know the cancer routine since I already went thru it with the breast cancer  in 2002 and had a mastectomy and a local oncologist.  If you think of anything else I can do besides wait til fall please let me know.

Again, I am praying for your hubby -- cancer sucks.  Hoping he is a long time survivor and beats this beast.

on the mend

I should have included you in my message to Tracy B (steveb50).  Sorry and hope you keep doing well.  At this point I am a bit afraid to go for the upper endoscopy as I am sure of what will be found.....my symptoms seem way beyond Barretts esophagus.

Hi Tracy B

Just have a question.  IFirst off I am a breast cancer survivor on no meds.  I have had GERD, acid reflux with a "sore throat" since 2004 in the hollow of my neck and have been on Prevacid and Zantac.  I now have shortness of breath, on and off cough, some hoarseness and now a bit of a problem swallowing water, not food, just water and sometimes pills get stuck in addition to sore throat.  Cardiac has been ruled out and going to see pulmonologist but I have had this feeling that it is related to my esophagus.  My GI doc retired and have been to 2 others already and all they want to do is colonoscopy.  I hemmoraged so badly  from the explosive "D" once so I am afraid to do the prep.  I am seeing a new one now at Brighams but she does procedures at Chestnut Hill but will not do mine there as I have too many drug allegies.  She said I should let her know (she also wants to do a colonoscopy and upper endoscopy at the same time because I need steroids for the procedure (allergic to rubber - latex and non latex) and she is afraid too much steroids affect the lining and she is afraid of perforation.  Well, I am going to try to push for just the upper in the fall and she has to make arrangements to do it at the hospital since she never does it there.  I am taking note of the surgeons name.  Does hubby have a GI doc at Brighams?  I really believe at this point I have EC as I have gotten worse over the past few months as far as breathing and swallowing are concerned.  It seems no one cares that much about the upper -- all they want to do is go up the rear for some reason.  Yes, I have some problems there with IBS, etc. but my old GI doc did a rigid sigmoid when he left August of 2014 and I never had any polyps or anything there and that is the area I have had problems....not the rest of the colon.

Any advice would be appreciated.  I can not do anything thru this GI doc before sometime in the fall....vaca and all.  I am so tired of doc visits as I have multiple health problems.  Oh, almost forgot I have scoliosis of the spine so have to see a spine doc also to see if that could be part of the SOB.  Maybe but I feel it in my bones that it is esophagus related.  I was diagnosed (or misdiagnosed) with exercise induced asthma at one point but it is so bad now -- stairs are horrible, esp bringing up my laundry basket....I literally gasp for air.

You prob know what I mean -- when you just have this nagging feeling about something.....

Thanks for any help and advice.

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