Recovery

Tonight I have gone through and read a few more peoples page. I am so sad when I read through peoples experiences. Does anyone feel like their doctors explained or gave an idea as to what to expect after the procedures/surgery. I know my embolism doctor told me that he had no idea what was going to happen. He told me the basic risk you have all heard: coma, stroke, or death, but that was all he new. I respected his honesty and expected it to be an easy recovery… I just wondered if anyone was felt prepared?

Hi Caress
nope i feel in the dark also when in hospital i felt he doctors talked over me not to me and all i got was the usual info come stroke blah blah blah. my own GP admited last week that she knew nothing about avm and seem only to keep me from returning to work she is waiting on my next angiogram(next app not set yet) when i visit her she asks how am i but it’s just a routine question, i could tell her i’ve grown a white fluffy tail and all she would say is “hmmm that’s nice” bloody worse than useless Grrr

I use to belive that it was just a problem in the states, but I am quickly drawing the conclusion that doctors are pretty clueless in every time zone

Hi, Caress. The specialists in Boston who did my PBR just said they couldn’t tell me what to expect because every patient is different. When I asked if there was anything I shouldn’t be doing, their response was that I should just go live my life the way I always have. Oh yeah…and don’t take any aspirin.

They told me to go see my local neurologist and to come back in 3-4 years. Now, my poor neuro, Dr. Tolunsky has never seen an AVM before and thought he’d be guided along by Dr. Chapman (th specialist at Massachussetts General Hospital in Boston). However, Dr. Chapman never returns any of his calls or responds to any of his letters. Basically, I’m teaching Dr. Tolunsky by what I’ve learned from AVM survivors like you guys!

Thanks to the good Lord, personally I have been very, very lucky in my recovery so far. My neurosurgeon Tony Whitworth has been very helpful and my recovery has been fairly positive so far.

I had gamma-knife and no side-effects until exactly one year later. Then I had some nauseas and brain swelling which have both subsided with steroid medications.

Overall, my observation is that AVM surgery recoveries cover the gamut from very, very difficult to fairly uneventful and it is impossible to predict how yours will go. Another survivor on this network had a crainiotomy, lost some peripheral vision, but is otherwise fully recovered. Of course, others have had to deal with seizures, headaches, and bleeds.

So, I would just advice you to realize that if your recovery has been difficult, you are definitely not alone. Don’t feel shy about posting any questions or rants here. Also, one more thing. It’s in your best interest to seek out a neurosurgeon experienced in AVM treatment. They are out there, but you may have to travel.

–Ben

HI CARESS, That was my biggest complaint ! we (my family) have decided that this avm stuff is so rare that doc. don’t have those answers. I found myself very upset. I WOULD NOT go through again.I just never will. And then they tell me that the d@#$% thing grows back! what the point???AT LEAST WE HAVE THIS WEB SITE THANKS to Ben who has made it all possible. I don’t feel so all alone anymore. …

Hi Caress,

My Dr’s tried their best to tell me what not to do, what not to take and did a good job explaining what an AVM was. That was the end of their expertise!! They told me that every single complaint or pain i had could not have anything to do with the AVM!! For almost 10 years now I have felt like I could still be a hypocondriac but then I found this site and now I know that I am not alone or crazy!! I agree that each person recovers and experiences differently but in general our issues overlap in some form. I don’t think anyone can be prepared for an AVM and everything it entails but through this forum we can help each other through it!!

no not prepared at all had an mri done.....had a contrast test next thing i know i'm prepped for surgery for coiling then they don't do the coiling i'm freaking out nobody would tell me anything got sent home then another surgery with ethanol glue embolism but the doctor told me after the surgery it might grow back told me i could go back to work on the third low and behold pain burning swelling i cant bend my knee but when i call my doctor hes on vacation my pcp doesnt kjnow a thing about avm????? whAT AM I TO DO? i AM A SINGLE MOTHER OF FOUR CHILDREN AGES 10,9,8,5????

I had surgery the end of June to remove my avm. My doctor had told me to expect to spend about 3 days in the hospital and be off work for about 3 weeks. Well I ended up being in the hospital for about a week and here it is 8 weeks later and I'm still not back to work. After my last doctors visit Aug. 13 he told me I should probably go to physical therepy to try and get my balance issues under control. Am now going twice a week but still have not seen much progress. The way my physical therepist talks, it sounds like this will take a while. It's just all very frustrating!

Hi tinkersyl. There are some great links on here if times get tough…http://www.avmsurvivors.org/forum/topics/help-for-low-income-americans?commentId=1543517%3AComment%3A276838
Please do not be put off by the label low income American. Nothing will deplete a bank account faster than an AVM!
You are on my prayer list!

THANK YOU VERY MUCH!!!!!!

My brother got an embolization last Monday. He looked pretty good, just normal.

In my opinion, yes basically the doctor has to inform you a risk but we can sense how much confidence he is in our case.

My brother’s first embolizing doctor tried to explian many risks that may causes in my brother’s case.

But his second doctor can did it well. I think you shoud try finding a second opinion from another doctor.

I was well informed by the Neurologists at Sharp Grossmont Hospital. Even on Heavy medications they made sure I and my family understood the procedures and recovery time.

Good Morning, First of all, everyone's experience may be similar but also unique. Don't get to depressed because emotions need to be in check to help your own situation. Stay as positive as possible. My situation you can read about so I won't go into it. I will say I didn't know what happened till afterwards.

Hi, there is a word that you may hear alot. "Patience"!!!!!! It took me a very long time
to get back to the way I wanted. Don't rush it, physical outcomes, I believe, is un-predictable.

Best Wishes