Aa
A
A
A
Close
Chiari Malformation Community
5.19k Members
620923 tn?1452919248

MONDAY"S RANT ~~2013

Rainy days and Mondays always get me down"
          .....so lets rant all day Monday- each Monday a different topic!!
                     Idea's for rants...ur NS, ur NL, ur PCP, ur meds, family and friends...the list is endless......

                                                            ........ post ur rant and get it out of ur system and enjoy the rest of the week!!
98 Responses
3224597 tn?1347322388
My rant...the difficulty getting good information. Since my diagnosis a few months ago, I've scoured message boards for help and answers. I've found alot of support, which is awesome. I also found (on a different message board) that we are not to mention bad reviews of hospitals, drs/etc by name. Therefore, we only see the best reviews. I feel I wasted considerable time and money because of this. If it were just me..I wouldn't rant..however, I got several private messages about a particular NS from people who were afraid to post negative comments on the boards because of what others might think.
This is our lives, our health, our welfare. We need desperately to open and honest. Many of us have to put on a happy face when we feel like hell inside..so let's all just be real here with our fellow Chiarians . Otherwise..we defeat the purpose of the forum.
That's my Monday rant...
620923 tn?1452919248
COMMUNITY LEADER

  Yes that is true, as it is public the Dr could google his name and consider the bad review slander...and u do not want to open urself up to that...what u can  do is ask if neone went to a Dr and if they have they will PM u...this is a private message so it is not out on the public forum.....I know of a few Drs to avoid....and I am sure there could be more out there,....but, some that have bad  experiences could be fewer then those that went to the same Dr and had good ones...so, it is hard to go by that .....experiences can be reduced to if u even liked the Dr....and that is perception and we all will perceive each Dr differently just as our SX and how the symptoms affect us is different.

I totally understand...but, it is the society of litigious suits and that is y there is that fear...but a PM is the best way to get answers and u may have to visit the Dr....

    
3224597 tn?1347322388
Okay..well, what about a site disclaimer? how do sites like health grades and yelp give reviews..some scathing reviews and not get sued?
620923 tn?1452919248
COMMUNITY LEADER

  Not really sure....but if ur name is attached u can get sued...and I try to avoid that.....and it is TOS for this site too....the MODS will delete if they feel it will affect them....

  I think using the PM feature is a great way to share info, and I do it many times if it is something I know...but some pass along bad info bcuz they heard it from someone else...and I have to say consider the source.,...some go in and expect to come out perfect,,..and that is not always the case, they do not hear or listen to the fact they may already have some nerve damage....

Surgery is not a fix or a cure, just a means to help restore CSF flow and slow progression, so it all depends on the individual...plus that individual may feel fine a few weeks post op and then over do it and then not be happy....this is a recovery we can not rush....it takes time.
2063048 tn?1390828211
Hello, everyone! My rant is my school :)  I've been attempting to complete my Masters in Curriculum and Instruction. I was only 2 semesters short when I was in my car accident in June 2011. I was diagnosed with Chiari and syringomyelia not too long after that. Due to severe pain and inability to use my left side, I missed two semesters of school. I did have decompression and C-1 laminectomy done in March 2012. I have tried working with my college to complete my program, but I have not once had any success in getting answers. All I wanted to know for the past year was whether or not they could accommodate me to complete two courses via the internet instead of in person because I can't drive very far. I was supposed to take those 2 courses last semester, but they closed my local campus the week before classes began. I am finally down to these last two courses, scheduled to begin on Thursday. And I can't do them - I can't drive for an hour and a half, sit for 6 hours, then drive home an hour and a half. :(

Why is it that no one ever seems to have answers?
620923 tn?1452919248
COMMUNITY LEADER

  Hi,....I am so  sorry this has happened to u, have u asked neone to take u there just to make ur point? Sometimes when we go in person it makes them take time to look at us  and change their mind.....

Give it a try get someone to take u.....and see if once u r there they will work with u.

Good Luck
2063048 tn?1390828211
Ha! I suppose just ranting helped because I am happy to report that after a year and a half of banging my head against a brick wall, I finally received help. I am now enrolled in the correct program that won't be so physically strenuous! 4 classes to go :D

620923 tn?1452919248
COMMUNITY LEADER

  Yea!!! Congratulations....so happy to hear u were heard and have a way to finish : )

Keep us posted on how it goes : )
620923 tn?1452919248
COMMUNITY LEADER
  Hi all my rant is the more I try to do the more my joints pop out of joint and  I  hurt,...

  Hope every one else had a better weekend.
Avatar universal
Hi sweetie. Sounds to me like you should listen to your body and not try to do so much. As we both know sometimes it cannot be avoided. I hope you are able to get some much needed rest now and allow your body to recoup. Hugs!  
620923 tn?1452919248
COMMUNITY LEADER

  I was not over doing it....just still not back to my new normal after overdoing it over Christmas...and that was not my fault,...DH always waits too long to do things.I try...I had all my cards done B4 Thanksgiving and found out he never mailed them...not sure where they r,...ugh...no wonder I hurt...lol...
Avatar universal
Hope you are getting some relief now. Hugs dear one!
620923 tn?1452919248
COMMUNITY LEADER

  I am going at a lower pace...and no need to rush now...so I am doing much better thanks : )
620923 tn?1452919248
COMMUNITY LEADER

Hi all what is ur rant this week?....it has gotten very cold and we r expecting snow Monday, I am glad I have nowhere I need to be.....lol...
1755089 tn?1376057155
My rant goes to the weather. We just had a snow storm and I was in such terrible pain, I still am! And the are now forcasting siberian cold for the next three days. No luck they wont closed the schools, so I'll still need to walk the kids to school in the cold and half cleaned sidewalks. I love winter just not great cold.
620923 tn?1452919248
COMMUNITY LEADER

That same cold system u have is moving in here.,,and I know what u mean with a drastic change which this is for us here, I had a day yesterday with my eyes watering and they were so blurry....I still feel we will have more snow then they r guessing .....but so far this winter we really have not had much....so I am thankful for that.

Sorry u have to walk out in the cold....how much snow do u need b4 they close the schools there?
1755089 tn?1376057155
Well for them to close the school we need at least a blizzard at 6 am or at least minus 30 before wind factor! Just say school is not often out!!! Last year it was closed a great total of 4 times.
620923 tn?1452919248
COMMUNITY LEADER

  Wow...we had barely nething  last week and had a 2 hr delay.....but they do tend to close here more now then when I was in school....

Must be ur area getting a lot of snow on a reg basis.....

Can u get someone to walk them to school for u?
1755089 tn?1376057155
My DH walked them this morning and ended up an hour latte for work! He will replace it by staying one more hour to night. He said that the school door panel had ice all over it!

If we were only a quater mile further from school they would qualified for the bus systeme, but we are to close to school for it. It's only a good 10 minute of walk on nice days, but on days like today its not to greath.

Yes our region tend to have a lot of snow and wind, I used to enjoy it, but not anymore!!! A well I guess thats how life is!!!
620923 tn?1452919248
COMMUNITY LEADER

  Well we r supposed to get snow today and the temps r frigid....brrrrr

The snowflakes that were falling an hour ago stopped, but should come back in time for rush hour and be slick....

I do not like the cold weather either....
4689100 tn?1358801534
My Monday rant....

It's cold outside And I hurt again today. I told this migraine to go away, i didn't want it anymore, but unfortuantely it hasn't listened.
620923 tn?1452919248
COMMUNITY LEADER

  Awww wnzday I know how u feel....we r expecting snow to start late tonight and change over to ice and possibly rain b4 it ends to it is going to be a cold damp Monday...yuck...and the cold makes me hurt too.
4800636 tn?1360541500
What a great idea!! I luv it. Rant on Mondays and get it out and face the rest of the week w out that pressure of frustration piled on top of all the rest we have to deal with.
4800636 tn?1360541500
Now for my rant. Just went to my first NS after diagnosis 3 1/2 mos ago. I have neuro Lyme disease and also lots of tumors throughout body so Lyme dr ordered MRI just to rule out possibility of another tumor causing sx other just the Lyme causing sx. Ns said no I don't need surgery for 6mm and just get eyes checked by opthomologist for blurry vision and " smokey" haze and floaters and ghost images. I asked if Lyme could cause swelling of brain or any issues at all that could worsen chiari. His reply was no.
I wanted to verify w Lyme dr and he was outraged at info that dr gave me. Said all the abx I'd been on for two mos for multiple infections can kill some of Lyme bacteria in my brain causing a flood of neurotoxins that can increase pressure in skull. Told me to see NEURO opthmoligist asap. My vision could be at stake. I also have numbness in l leg w episodes of leg going completly dead and foot just drops and dangles like my ankle is broken. My Lyme dr said that could also be very serious and needs to be addressed asap as well. NS just said if eyes r ok just go to my pcp if I had any new symptoms and he would decide then if I needed to come see him. From my research on chiari it seems he is being awfully cavalier abt my health and risk of permanent damage. Said he doesn't do surgery until 8 or more mm. I have many more neuro sx as well. I don't know which way is up w all this conflicting info. I'm scared but also so mad how drs r so willing to just let things slide until something bad happens. I've got so many health issues it's ridiculous and i got this way bcuz drs don't properly address my concerns abt sx until problems get really severe and by then the damage is done and meanwhile I just get to suffer and decline w no end in sight!!  Well I could rant for days but thx for listening and I wish all a blessed and safe week!  
Have an Answer?
Top Neurology Answerers
620923 tn?1452919248
Allentown, PA
987762 tn?1331031553
Australia
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease