Jump to content

Menu

Prayers, please ... we think we found the culprit!


Recommended Posts

Hello!

 

Some of you know my mom, Robin Finley (she's the author of Analytical Grammar). She was diagnosed with Stage IV Lieomyosarcoma over a year ago. Cancer-wise, she's doing well -- totally stable.

 

But ...

 

Before her cancer was diagnosed, she began having "attacks" of pain that would come on when she exerted herself. It used to be only a great level of exertion (picking up one of my kids, for example).

It's gotten so bad now that she's in a wheelchair. They scanned and checked everything: heart, pancreas, etc., tried nerve blocks, nothing has worked. SHe's completely able-bodied, but if she so much as gets up to walk to the bathroom, she'll have an attack of SERIOUS abdominal pain for about 15-20 minutes. Then it goes away and she's fine again.

A family friend mentioned an acquaintance who had a similar problem. Scans and tests showed nothing. This woman's doctor said that it was sort of a shot in the dark, but they could try removing her gall bladder. That did it; no more pain.

So I got looking online. Typical gall-bladder inflamation/stones/sludge usually present as pain after eating greasy or heavy food and they're not as frequent as moms. The more I looked, though, I found cases where the pain happened after exertion, was not tied to food, only lasted 15-20 minutes, and didn't show up on scans.

Monday we went back to her gastrointerologist and I showed him my data. He scheduled mom for an ultrasound (the best way of seeing GB issues). He said if something showed up, she'd see a surgeon next week and we'd take it out. If the US showed nothing, there was one other test.

Well, we had the US this morning. The GB looked normal, but right before it was over, the tech had mom sit upright and she looked again. THERE IT WAS! A 1/2 cm gallstone right at the neck. This was where her doc said it might be if anything were to cause her problems.

 

We are SO excited! We're flying to Long Beach, CA, tomorrow for the CHEA convention. I hope that mom will be in surgery by the end of next week.

 

Please pray that this little non-vital organ is the culprit of all this. Mom SO wants to get out of this d@mn wheelchair!

 

:grouphug::grouphug::grouphug::grouphug:

Link to comment
Share on other sites

1. THIS IS WHAT HAPPENED TO ME! When I was 29 I had EXACTLY the same symptoms you're describing in your mother. Every test came back negative-- everything from barium swallows to Lyme disease. I had a radiologist-friend who suggested that I repeat the US while sitting up, lying down and lying on my side. Sure enough, the US clearly showed a big gall stone "hiding" in the bile duct! Gall stone removed, NO MORE PAIN! It's a very atypical presentation, but it happens. Please know I'll keep your mom in my thoughts.

 

2. WE ADORE ANALYTICAL GRAMMAR! I had no idea you were connected with the program. Let me personally extend my gratitude for your hard work!

 

All Best,

Astrid

Link to comment
Share on other sites

Will keep Robin in our prayers. :grouphug:Four years ago I had similar symptoms and had been through every test and nothing showed up until I had HIDA Scan which is a nuclear scan of the gallbladder. Showed gallbladder was diseased and had it out--no more pain. Hoping once her gallbladder is out she'll be back to feeling great.

Link to comment
Share on other sites

I don't want to change your plans but wanted to share my gb issue. WHen I was 31 I was having painful attacks in my stomach area. Did not know what they were. This would happen about every 4-6 weeks. In the begining they were short but very intense. After dealing with this for almost a year (it took that long because at first I didn't connect it with the gall bladder because the pain felt as though it was coming from my stomach, not under my right rib cage.) I finally went to talk to a doctor. He sent me for the sonogram and sure enough I was full of stones. His diagnosis was to send me for surgery. He could not tell me why my body was passing stones but that if one passed and got lodged I could die. But yet he couldn't tell me why or what to do other than cut it out.

 

So......I decided to get a second opinion. I went to a naturopathic doctor and we evaluated what I was eating, my lifestyle etc. The first thing we did was limit the fatty food intake and the overall quantity of what i was eating. She gave me a natural supplement to help give nutrients specifically for my gall bladder. It took a little time but it has been over two years since I have had any attacks. I have had no aching in the gall bladder area. Nothing. I believe that being overweight, not exercising, not drinking enough water and having a really crappy diet contributed to my problem. It was a wake up call. My body was trying to tell me it was way too overloaded and unhealthy. It's just my two cents but in my opionion your gall bladder is an organ that can get sick or infected too. just like a sore throat, intestinal imbalance etc.

 

That said......if you choose surgery I wish you the speediest recovery and a smile. Gall bladder attacks stink. They hurt like the dickens. Ruby:grouphug:

Link to comment
Share on other sites

1. THIS IS WHAT HAPPENED TO ME! When I was 29 I had EXACTLY the same symptoms you're describing in your mother. Every test came back negative-- everything from barium swallows to Lyme disease. I had a radiologist-friend who suggested that I repeat the US while sitting up, lying down and lying on my side. Sure enough, the US clearly showed a big gall stone "hiding" in the bile duct! Gall stone removed, NO MORE PAIN! It's a very atypical presentation, but it happens. Please know I'll keep your mom in my thoughts.

 

2. WE ADORE ANALYTICAL GRAMMAR! I had no idea you were connected with the program. Let me personally extend my gratitude for your hard work!

 

All Best,

Astrid

 

Astrid,

 

Really? Your pain came on with exertion? That's fascinating! Her stone is in the bile duct, too. For WELL over a year now, all the docs have been flummoxed! Her oncologists had no clue, her heart tested perfectly, even the gastrointerologist had no idea. They're so used to seeing attacks after big, greasy meals. Plus they usually see it in younger women.

I think they were prone, in the back of their minds, to blame the cancer, too. It's very rare, so docs aren't familiar with what havoc LMS can wreak. I KNEW from talking with LMS sufferers all over the world that they didn't have symptoms like this. We just kept digging and digging.

 

Oh, I pray so hard that mom will be out of this wheelchair soon. She wants to be able-bodied again. Plus, she has a book she's going to write this fall and the more mobile she is the easier that will be. For those of you who want help studying high school literature, we hope to have The Eternal Argument: a framework for studying Western Literature and Culture ready for next convention season. I can't wait; I think the book will be amazing!

 

Anyway, I don't want to be misconstrued as advertising; I just want my mommy back, you know? She's got so much more to do!!!

 

Thank you all for your prayers, I can't tell you how much they mean to us.

Link to comment
Share on other sites

I don't want to change your plans but wanted to share my gb issue. WHen I was 31 I was having painful attacks in my stomach area. Did not know what they were. This would happen about every 4-6 weeks. In the begining they were short but very intense. After dealing with this for almost a year (it took that long because at first I didn't connect it with the gall bladder because the pain felt as though it was coming from my stomach, not under my right rib cage.) I finally went to talk to a doctor. He sent me for the sonogram and sure enough I was full of stones. His diagnosis was to send me for surgery. He could not tell me why my body was passing stones but that if one passed and got lodged I could die. But yet he couldn't tell me why or what to do other than cut it out.

 

So......I decided to get a second opinion. I went to a naturopathic doctor and we evaluated what I was eating, my lifestyle etc. The first thing we did was limit the fatty food intake and the overall quantity of what i was eating. She gave me a natural supplement to help give nutrients specifically for my gall bladder. It took a little time but it has been over two years since I have had any attacks. I have had no aching in the gall bladder area. Nothing. I believe that being overweight, not exercising, not drinking enough water and having a really crappy diet contributed to my problem. It was a wake up call. My body was trying to tell me it was way too overloaded and unhealthy. It's just my two cents but in my opionion your gall bladder is an organ that can get sick or infected too. just like a sore throat, intestinal imbalance etc.

 

That said......if you choose surgery I wish you the speediest recovery and a smile. Gall bladder attacks stink. They hurt like the dickens. Ruby:grouphug:

 

Ruby,

 

Thank you. Mom's diet is already very low-fat, mostly organic (cancer). She is also under the care of many docs, one of whom is an acupuncturist. We spoke with her today and she agrees that the GB needs to be removed; mom's symptoms and attacks are just too bad. She's on a lot of herbs and supplements in addition to her cancer meds. The attacks are not related, we know this because they started even before her cancer was diagnosed.

I think had we diagnosed this a year ago, we'd try the naturopathic route. At this point, though, she has attacks ALL THE TIME, unless she's in a wheelchair. Just walking 5 steps to the bathroom will bring one on.

 

I appreciate your comments, though, and I'm so glad you were able to treat yours without surgery.

 

Blessings,

Link to comment
Share on other sites

I am so excited for you and your mom. It really does sound like she is on her way out of the woods on this one. Good for her. The new lit. resource you both are working on sounds fantastic. I am headed for your website to seek it out- I don't see that as advertising, just information, and that's why I am here.

 

Best wishes to your family and I hope to see you in Atlanta at the end of the month- I need some more grammar materials.

Link to comment
Share on other sites

I am so excited for you and your mom. It really does sound like she is on her way out of the woods on this one. Good for her. The new lit. resource you both are working on sounds fantastic. I am headed for your website to seek it out- I don't see that as advertising, just information, and that's why I am here.

 

Best wishes to your family and I hope to see you in Atlanta at the end of the month- I need some more grammar materials.

 

Jenny,

 

Thanks! There's nothing about the lit book on the web site right now, it's all in my computer and mom's head!:tongue_smilie: We'll see you at the Atlanta Expo; make sure you tell me who you are when we meet!

Link to comment
Share on other sites

I'm really pleased to read this great news. And very impressed with you Erin for being your mother's advocate, doing the research, and going the extra mile. Well done!!!

 

You mother is fortunate to have a daughter like you. And vice-versa I'm sure.

 

Best wishes for what comes.

 

Bill

Link to comment
Share on other sites

I'm really pleased to read this great news. And very impressed with you Erin for being your mother's advocate, doing the research, and going the extra mile. Well done!!!

 

You mother is fortunate to have a daughter like you. And vice-versa I'm sure.

 

Best wishes for what comes.

 

Bill

 

 

Thanks, Bill!

 

You know, seriously, you really have to be your own advocate (or have a family member or friend who will) especially when you have a rare disease or something is wrong with you that is unexplainable. The internet is such a wonderful thing!

Link to comment
Share on other sites

Hi, all!

 

Thought I would post an update.

 

We went to Long Beach, CA, last weekend for the CHEA convention. We got home Sunday and mom was exhausted. This morning she really felt bad, couldn't eat, no energy. She had an appointment with the surgeon at 3:30, but didn't see how she'd have the energy to get there.

We made the decision to take an ambulance to the ER so she didn't have to move at all. The attacks come with ANY exertion ... even a couple of steps to the restroom.

They gave her fluids and the surgeon came to the hospital. He's agreed to do the surgery, although he's not convinced all these "weird things" are being caused by the gall bladder. They'll call tomorrow to confirm, but he said it should be Wednesday for the surgery.

 

Mom's home now and resting. We're basically counting the hours to the surgery.

 

Oh, I pray and I pray that the surgeon's reservations are not accurate. If removing the gall bladder doesn't fix this we have no other options. We have NO IDEA what could be causing these attacks. She also has almost no appetite at all and I'm really hoping that's related, too. Her cancer treatment doesn't usually affect the appetite. Not to mention that her treatment has been the same for MONTHS, her cancer has been stable for MONTHS, yet her pain is much worse and her appetite with it.

 

Thank you all for your prayers!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...