Internet

Internet as lovely and convenient it is for research I do wonder and been told by many Doctors and Counsellors how dangerous its becoming we all do it when we get some symptom or illness we look it up in hope in finding reassurance but most often than not most posts can be damaging must all remember we are all different nobody will have exactly the same and be treated by the same surgeon that is all very unlikely. Also remember that its human nature to post things that are negative.

Reason I am mentioning this is because even though my DAVF had thrombosd itself I was finding myself looking up things like what if it comes back what will the impact of surgery be and if I had to have it , would I still be able to work etc etc…..This can lead very much into anxiety and stress which I now have counselling for myself.

Forums are great for moral support but don’t use it for trying to give yourself “what” and “if” answers I have defo found in my experience made me a lot more worried than may need to be sometimes it’s the classic if you don’t know about it won’t bother you.

The key is to trust the doctors treating you and believe in them.

All the very best

Daven, Even though I new I had an AVM, the only thing I looked up online was to find the best doctor I could find and listen to him. I actually didn't have time to search the web because I was so busy in a project at work that I didn't have time. Looking back at it...I am thankful that I didn't as it would have caused alot more anxiety and stress. It is very difficult for our members not to want more information and sometimes the doctors don't take the time to teach us what we truly need to now.

Hi Daven,

One of the things we moderators try to do here is keep an eye out for someone posting "well, you need to do this and this to fix your AVM." Not even an AVM doctor would make a diagnosis/treatment plan based solely on what he's read here.

I think it is good that many times, members here will respond to messages describing symptoms with "You should probably talk with your Doctor."

To me the real advantage is that the net has allowed the common person to access for (almost) free medical information that was less available 20 yrs ago. For example, around 1991 when my wife's AVM showed up, we had never heard of AVMs, nor if/how they could be treated.

Having at the time just signed up with internet (remember Compuserve?), I found a site that would let me read the abstracts of Medical Journal publications. Abstracts were free, but if you wanted to read the whole article, you had to pay so much per minute to download them (over a slow phone modem). I spent several hundred dollars downloading articles about AVMs, many of which were written by a doctor from Boston that we had been referred to.

It was difficult reading. I printed them out doublespaced, then had to use a dictionary (this was before Google!) in order to write meanings of most words in the articles. Often we would take our printouts to our local doctor and have them try to decipher parts of what we were reading. Even they had trouble!

I guess my point is there is always a risk in doing self research and diagnosis, but the tools we have today make it so much easier than 20 yrs ago. When we first went to specialists, we had to pay to get a hard copy of our MRI/CT scans. We hauled massive packages of these from KS to CA so the specialist could look at them. Now, your scans can be emailed or you carry a DVD of them. WOW!

Best wishes,
Ron, Kansas

Hello Ron
I do remember compuserve sadly lol .....I agree certainly in certain things Internet is great but reasearching possible outcomes or self diagnosing symptoms is a dangerous game far more success stories out there just nobody has a reason to share them with anyone. You can get yourself so worked up or even ill over the stress of worrying about things that you read when the likely hood is you will be fine. I was told by my counsellor they treat more people for anxiety and stress from reading stuff on the internet than the illnesses themselves.

Best Wishes

LOL!

Our daughter, who is now an Occupational Therapist, was quite a child. She was always a good reader, and when she was about 10, she picked up a home medical care book we had. She took it to her room and started reading. Pretty soon, she'd come out complaining of all the symptoms of what she'd just read about! We had to take the book away from her.

It was funny--we had to put a daily limit on the # of bandaids she'd use. Any tiny bump or scrape required a bandaid. Typically, she'd have to point to where the hurt was, cuz we couldn't see it. God Forbid if there was any blood--she'd freak out.

Fast forward to med skule: I worried that she'd not be able to handle anatamony classes, working on cadavers and such. She LOVED it!!!!!!!!!!!!! The human body fascinated her, and still does.

Good Day,
Ron, KS

Nice one Ron that made me smile lol Now that is what the internet is for (-:

Hi Daven. This site is not a diagnostic tool. We encourage members to get 2nd and 3rd opinions if possible. AVMs are so rare that really there are only a handful of doctors worldwide that have any idea how to deal with them.
I always tell new members that every AVM is different so every recovery is different. This site is about support and hope. We have a whole section labeled…questions for my doctor. We have various sub-groups to help with the specific needs of members. We even have a Success Stories group. BTW… We do not define Success as being 100% well but rather on how well you move on with life given any deficits you might have incurred because of a bleed.
I did not spend the last 25 years dwelling upon my AVM bleed. I have had a full and complete life. I am on this site because I remember how all alone and scared I felt in the hospital. I would not wish that feeling upon my worst enemy.
This is a great topic and I am glad you brought it up!

Well said Barbara,

Ron, KS

Thankyou Barbara....Yes defo nice to know not alone with these things many sucessful outcomes too just really saying not to scare yourself silly like it did me lol cause all very different and some will also have other health concerns too on top of all this loads of factors to consider.

Take Care

I think there is a balance. I honestly think docs don't like it when a pt comes in well-informed. The key is to go to the reliable resources on the internet like Mayo Clinic as opposed to just pulling up search responses and reading everything that comes up. That is a calculated risk you take if you search for the What-ifs and worst-case scenarios...you are going to read bad stuff. Working with your Doc, he can point you in the direction of some good resources online and help you with your fears by discussing your individual case. I like the internet, I like to show up to my docs office w/ questions in hand whether they like it or not. knowledge is power....just gotta make sure you get the tap into the credible knowlege/resources.

Think good to remember too that yes defo not nice thing to have but treatment is available and with a complete cure with high success rates. There are far worst things to be diagnosed with hard to think like that at certain times I know but it’s true this is something that can be dealt with successfully nowadays.

Best Wishes

Hi Daven - I had a bleed and then in a coma for 3 weeks. I was taken to the emergency room in an ambulance where I was already completely out.



When they told my then-boyfriend what it was, he wrote down “ABM” , as that was what he thought the neurosurgeon said…no one in my “circle” had any clue as to what an AVM was…it was a relief to find this “promised land” -not to be overly dramatic- where others actually knew what an AVM was or at least heard of one.

My main concern later on was that I was wearing a semi-cute outfit and cute underwear to ER when they cut off my clothes…and once vanity subsided, that took a while BTW, I really wanted to be surrounded by others who didn’t think that I was a total freak. It was a relief to read others’ similar stories here; plus some that put my situation to shame.

Hi Julie
Your story made me laugh. I hope all is well with you now.

Best wishes

If anything… This site has taught me and encouraged me to “know” MY AVM! to be my best advocate and to have all my records… and to have a “concerned” doc! That all is valuable info!! SMILE

Nice one totally agree
All the very best

Daven,...

Here is my "spin" on this topic:

Being an AVM sufferer, we MUST be our own patient/medical advocate. If we do not, who will ?
The internet is a fabulous resourse for patient information, and as I have been known to say,..."information = knowledge as knowledge = power, the power to make the best decision for yourself". (with physicians understanding and approval)

The caveat being once,...(once is the key word here),...one finds the physician/surgeon/medical professional that offers experience, knowledge, compassion, understanding and communication, he/she is a keeper.
As I have noticed that being to be able to communicate on a professional level with medical providers is a benefit and not a detriment when attempting to explain and or describe ones condition.

Agreed, medical issue internet postings can be good and bad, positive and negative, pending on ones view and ones perspective on the condition. Speaking for myself, I tend to see the glass as half full, I look for options. Alternatives, modifications, adaptations and improvisations, as I am an AVM survivor, and I will,...NEVER,...quit and give up.

My humble .02,...

Your friend,...

William

Hi Davwn!

I want to get in on this discussion. First of THANK YOU for posting this about the internet. Back in Oct 2006, my mother went on the internet to research the very unknown AVM thing and it scared her silly. It took awhile to recover from that. Point is, yes the internet is wonderful and chock full of information, but it is also not regulated. When members first found out about the AVM they go online to research it. Makes sense. But where they get information really does matter considering this non regulation thing. This is an awesome site for information (as well as a personal touch of the information) and support but no, it should never be a substitute for what your doctor tells you (and we do recommend second, third and even fourth recommendations as well). Bottom line, this a very important topic for newbies (and oldies as well). Your post definitely caught my attention. Thank you again for posting this.

Thanks for your comments sorry hear you say you are still a sufferer I do hope things get sorted out for you very soon.

All the best

Thankyou Suzy… Just wanted to bring it to focus cause from my own personal experience it has given me health aniexty and most of it I am sure could of been prevented had I not of searched so much on the subject.

Take Care

So true. They do say a "little bit of knowledge is a dangerous thing". I guess you just have to be aware of this when you're on Dr. Google! Even with a medical back gound it can be very hard to control myself with the internet and most of the time I just end up more anxious rather than empowered with knowledge. This may not be everyone's experience but it certainly is mine. I think this site is great as it's a support group and you can find out about potential doctors that may have experience with conditions that are rare ( as in my case).