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26th-Jul-2013 04:08 pm - Dear Medical community:
Swan Queen
You can make an artificial heart, grow a new windpipe in a lab, and make a bionic pancreas. Surely you can figure out what is making me start hiccuping every few hours, and figure out how to fix it, without making lose practically all other function in my body.

Sincerely,
Me
1st-Jul-2013 01:15 am - Hello
stary sky

I hope everyone is doing alright. Sorry I haven't really been around. Feel free to message me, anytime, if you need help with anything.

~Kirsten

29th-Oct-2011 01:43 am(no subject)
comfort
Does anybody here have, or know, Dr. J Gordon McComb, from Children Hospital of Los Angeles?
6th-Aug-2011 03:06 pm - Just imagine
Dreaming
If you were composing a hatemail to your surgeon, what would you say?
9th-Feb-2011 01:04 pm - Awful quiet....
Drink up
It's been awfully quiet around here. I hope that means you're all doing well. I don't know how many people are still reading here...

This is a long shot, but does anyone here live in Portland, OR?
No  mouth
Really?? I am shocked. Shocked, I tell you!

COLUMBUS, Ohio -- Far more patients with primary brain tumors have trouble swallowing food and liquids than physicians previously thought, recent research shows.


The article is 10 years old, but still...
10th-Feb-2010 09:19 pm(no subject)
Sophie the Model
I know there's worse to complain about, but...

I had my latest MRI two days ago. I had contrast injected, but the technician had a hard time and tried twice on my right arm and was finally successful on the third try on my left arm (after spilling the contrast all over my arm). That didn't bother me, because I'm not that bothered by needles.

But...

Today (again, two days later) I've developed an extensive bruise on my arm and pain/tenderness moving up into my forearm. I can't hold anything heavy in my left hand. Is my body being sensitive, or is this something I should check out with my doctor ASAP? I can't remember my last administration of contrast being this painful.

What do you think?
19th-Nov-2009 02:14 am - Brain Tumor Potluck
corset
I signed up to be on the planning committee for next year's Brain Tumor Walk. The first potluck was this last Sunday. It wasn't a formal meeting, just a casual potluck for idea gathering.

The potluck was way far ot, so I almost didn't even try to go... I got a ride, though. Glad I went. The food provided last year included bottled water, whole apples, oranges and bagels. I was disappointed with the lack of choices for people with dysphagia.

There were 8 people there. A couple had family members with brain tumors an d couple of them had been diagnosed within the last year or two. When I brought up my concerns over dysphagia friendly foods, none of them had ever thought of it.

For the record, i don't think anyone at the potluck actually had dysphagia. I guess it is one of those things that you never think of, unless you have it, though. I guess, even if you do, it's something you have to get used to thinking about.
2nd-Sep-2009 06:02 pm - Chronic hiccups, anyone?
drowning
Not "chronic" in the sense that they never go away, but "chronic" in the sense that I get them at least once a day.

Do any of you have this issue with hiccups? I seem to spend the majority of my time either with hiccups, or hiccup like spasms(burps?) It could explain why I spend so much of my time annoyed... to make matters worse, sometimes I hiccup & then start choking, either on saliva, or a crumb of something left in my throat from the last time I ate. This has been happening for at least ten years & is driving me out of my mind.


Also, does Calcium make you burp? I upped my calcium intake after I started getting Depo Provera injections. It may have gotten worse, but it's really hard to tell.

Oh & I do have a VP shunt. I can feel the tube through my skin across my diaphragm. Sometimes I can even see it.
24th-May-2009 11:25 pm - Hard to swallow...
comfort
I was just wondering...does anyone else here have problems with swallowing? I mean long term... but if you had Dysphagia that went away-- how long did you have it, and what kind of treatment did you get?

There seems to be so little info out there geared toward people who actually have Dysphagia. Mos t of it is geared towards caretakers & therapists. There's really no place for people who actually have Dysphagia

There's really nothing available... even here on LJ. Not unless you have ALS or MS... Anyway, I hope to change that. I created dysphagia_sucks, in hopes that it would turn into a supportive community for everyone with dysphagia. I am cautiously optimistic.
11th-May-2009 04:11 pm - please help
eyes
I lost both my parents almost 5 years ago to cancer, and I am now engaged, but I have no one to help me pay for the wedding, so we are going to have to save up for years and years to be able to get married the way we would like. I am in a contest in St. Louis to win a free wedding. If you could all just go online and vote, it only takes 5 minutes and it would mean the world to my fiance and I. Please feel free to read our story and pass it along.

Here is the link to our story: http://www.loufuszgiveaway.com/Details.aspx?wid=127

Here is the link to register to vote: www.loufuszgiveaway.com

Thank you for your time.

Amanda
27th-Apr-2009 03:47 pm - Relationships Post-diagnosis
23 birthday
Hello! My name is Patricia Metzger and I am a graduate student studying clinical psychology. Like you, I have been faced my own cancer diagnosis, along with having supported several family members and friends diagnosed with a wide range of cancers and other life-threatening diseases. These experiences have forever touched my life and have inspired me to attempt to better understand the experiences of those facing cancer and other life threatening illnesses.

As part of my dissertation research, I am conducting a study examining interpersonal relationships and communication amongst those facing cancer or another life threatening disease. I hope to gain a greater understanding of cancer's impact on relationships, the role of communication following a diagnosis, and it's role in psychological health and relationship development. In the long term, I plan to develop interventions/therapies to aid in the emotional, psychological, and relational adjustment to this disease.

I am currently seeking participants in a study of relationships after one partner has received a diagnosis of cancer. Any person who is part of a serious, long term relationship (e.g., married, partnered, engaged, etc.) and has either received such a diagnosis, or has a spouse/partner with a diagnosis, is invited to participate. Both halves of the couple are asked to complete the survey; if both persons complete it, they will receive $25 compensaion. Alternatively, these funds can be donated to a charitable organization of your choice, such as the American Cancer Society, National Hospice and Palliative Care Organization, Susan G. Komen Foundation, or any other organization of your choosing.

You and your partner are invited to participate in a brief study lasting no more than 20 minutes - most persons complete the survey in just 10-15 minutes. It will ask you about your experiences following diagnosis with cancer. Only persons who are part of a long-term relationship should complete the survey; we also ask you to refer your spouse/partner to also complete the questionnaire. All responses are confidential and anonymous; no identifying information will be collected. Responses will be used only in aggregate form, so that no one can identify your responses.

The web address for the study is:

https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6

In exchange for completion, $25 compensation will be offered to couples where both persons complete the study. Funds are only available if BOTH partners complete the survey. You are asked, following your completion, to ask your spouse/partner to also complete the study. You should simply refer them to the same web address noted above. Available funds can be mailed to you, or donated to a charity of your choice. If you choose to have funds mailed to you, contact information will be stored separately from your survey responses.

To refer your partner and receive compensation, you should direct your spouse/partner to this same survey link (https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6). Completion by both you and your spouse/partner will better help us understand relational issues resulting from diagnosis and will help us to develop interventions, treatments, and therapies that will facilitate coping with this difficult life event.

If you have any questions, comments, or concerns, please contact me at the following email address: metzger@uwyo.edu.

Thank you very much for your assistance on this project! Completion will help us better address the needs of those facing cancer and other serious illnesses so as to minimize the stressors at this time. If interested, please contact me via email (metzger@uwyo.edu) for the results of the study.

Again, you can access this brief study at:

https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6


Sincerely,

Patricia L. Metzger, M.S.
University of Wyoming
Department of Psychology
metzger@uwyo.edu

NOTE: Please encourage your partner to take this! It's a small amount of time and is a huge help in the long-term goal of developing interventions for those facing this horrible illness - understanding BOTH sides of the story takes this someplace research hasn't gone. THANKS for your help!!
27th-Dec-2008 12:20 pm - Verbal tics

Can verbal tics, such as being stuck looping interjections when trying to talk and often being taken over by it, a common late side effect from cranio spinal radiation?
 

24th-Dec-2008 05:52 pm - Post-surgery
Helen Mirren
Hi,

I'm new to this community (and also pretty new to Livejournal). I had surgery on December 12th to remove a cerebral cavernous malformation (CCM) from my frontal lobe. My doctors believe that it was a congenital defect. The problems started when I had a cerebral hemorrhage on December 3rd at work and started seizing. To the best of my knowledge, I hadn't had any symptoms prior to that except some nausea. As far as I'm concerned, I was sitting by some coworkers with a glass of ginger ale in my hand, and then I was being walked downstairs and asking my supervisor why on earth I needed to get into an ambulance. It was very confusing, to say the least.

Anyway, the good news is that it looks like my surgery went spectacularly. I haven't had any problems aside from some headaches and nausea, and I can usually control that with some form of Tylenol. What has been most difficult for me is that I can't return to work until January 12th at the earliest and I've had to move back with my parents for the time being. Also, my driver's license has been temporarily suspended because of the seizures. I've already received a $645 ambulance fee (for driving 8 blocks?!) and I'm not sure I've even reached the tip of the iceberg in terms of medical fees. I have insurance, but I know that I'm going to have to be paying for at least some costs. So, all of this leaves me feeling really trapped. For the most part, I've been trying to remain really upbeat about everything that has happened, especially considering that my procedure and recovery have been relatively easy, but it's hard to not be able to live by myself or drive or go running or do so many other mundane things that I used to take for granted. I know that I should be able to be back to normal eventually, but I'd love to hear any advice people here may have about surgery and the post-hospitalization period. I've been trying hard to stay in touch with friends by phone and email, which has helped tremendously, and I've been looking into becoming involved with various brain tumor organizations. (I work in medical research, so it's really important to me to give money and time over the rest of my life to this cause.) Any other suggestions for how I can keep myself afloat during this time?

Thanks, and Merry Christmas to those who celebrate!
So here's the deal: I have an anaplastic astrocytoma. I plan on winning. I'm Mr. Positive and refuse to accept my prognosis (6 months to 2 years). I'm thinking that's just a standard prognosis as the average age is 41. Well, I'm 21. I had it removed on September 12th at Vanderbilt and they got most of it. The part that's left is about the size of a lima bean. The original tumor was over a quarter of my brain mass. In other words, huge. I also had no symptoms. Due to the location, I lost left field vision but that's it. No seizures, no nothing. I was out of the hospital two days after my surgery. I ended up catching MRSA and my bone flap is no longer (yeck) but whatever. My family's positive, I'm positive, etc etc. In addition to Temodar and radiation, what else is beneficial? I'm totally down with alternative therapy as my mom is/was a hippie and I grew up with that. I had to take the semester off and I have no idea when I'll be back in school. (I go to Tulane University in New Orleans and my family lives in southeast Tennessee. I'm in Tennessee for treatment and whatnot.

yeah.
4th-Oct-2008 06:47 pm - Hi
Hi there.  I am still in the throes of getting diagnosed.  I've lost central vision in my right eye - it's a foggy gray fuzz.  I've had three eye exams.  The first was by a regular eye doctor.  She had me come back the next day to be examined by an eye doctor who specializes in optic nerve diseases.  He sent me to an optometric neurologist (I think that's what you'd call it), and he prescribed 2 MRI's, one of my eye and one of my brain.  All three eye doctors I've seen so far seem afraid to say the words "brain tumor" but they've said "swelling", "mass", and "illness".  They said it might be a thyroid problem or it might be a "mass".  Finally the neurologist did say that it might be a tumor, but he can't say for sure until after the MRI results come in.  I haven't had the MRI's yet but they are scheduled for this week and next week.  

I haven't told my family.

I am scared.      
25th-Aug-2008 01:46 pm(no subject)
Could this be a Brain Tumor?
Hello,
Im 19 years old, with a lazy eye, and lately i have been experiencing double vision, and headaches. Im not sure if its due to my eyes or a brain tumor. I had a brain scan about 5 years ago, and it came out negative. I have weird sensations in my head, but that can be due to anxiety too.
For almost 2 weeks now ive had double vision, but ive had it before like a year ago too... for almost like 3 years, i also have spots in my vision.
Also, i have a lot of neck tension i have like about 10 knots in my neck literally. I cant go to the eye doctor because i have no insurance...and im not sure what to do from here.

Also, i may add i went to the ER for chest pain and they put me on some Anti-anxiety medication (ativan) and ever sense i took that i have had double vision and really bad mood swings to the point where i burst out crying, stopped taking it two days ago. Could the Ativan be causing my double vision?

And if i had a brain tumor wouldn't my eye doctor have noticed it the first time i had double vision about almost 4 years ago?
I also get really weird jerks and stuff.

I would love to go to the eye doctor to get my eyes checked again, but cant with no insurance. =[

Thanks for your time.
_Leah
12th-Jul-2008 11:57 pm - introduction
kitten, vivaldi
Hiya , I thought i'd join this group because I've had a cancerous grade 4 astrocytoma (GBM) and currently going through chemotherapy (Temodol).  Treatment has not been as successful as they are hoping and I also have several benign astrocytomas that aren't being treated at the moment.  I also have severe epilepsy and because of the tumour i have a weak lefthandside (partial paraylsis some days) dysphagia - puree food and thick and easy drink stage and difficulty with memory and balance.  Aprt from that I'm a lively young women who's a Christian, involved in church activities, girldguiding and love to spend time yapping with friends and helping others (oh and reading!)  Just fancied talking to some people who might actually understand the frustrations of chemo and having a brai tumour which cant be removed by surgery.
20th-Mar-2008 04:19 pm - Relief
Sophie the Model
I got the results of my latest scan today and there's been no change from the beginning (first found in 2005).  The neurosurgeon said the tumour's just not acting like cancer, which is a good sign.  But he wants to monitor it with regular MRIs for the next 15 years.

Sorry if I sound like I'm gloating.  It's just a relief and a reminder to myself that I've been very lucky so far.
Zombie carrot
My mom sent me this in an email the other day, and I thought you might appreciate it:

This week's theme: Yours to discover.
>
> dysphagia (dis-FAYJ-uh, -jee-uh) noun
>
> Difficulty in swallowing.
>
> [From Greek dys- (bad, difficult) + phagein (to eat).]
> > Today's word in Visual Thesaurus: http://visualthesaurus.com/?w1=dysphagia
>
> -Anu Garg (words at wordsmith.org)
>
> "So Boswell and Achilles collaborated on creating The Dysphagia Cookbook:
> Great Tasting and Nutritious Recipes for People with Swallowing
> Difficulties."
> Mary Beth Faller; Book Aids Those With Eating Ills; The Arizona Republic;
> Mar 14, 2006.
>

I looked up the cookbook on Amazon, and it sounds pretty good. This is the first time I'd ever seen such a thing, so of course I had to order it. I ordered this one & another one, called "Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing."
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