Hello everyone!!! I am curious to know where everyone is located currently. Where did you receive treatment, if any, and how has Covid-19 affected your recovery journey?
I just got done reading your reply on the other thread
But, I suppose we’re around the same area somewhere - since I was treated at Barrow Neurological, here in Phoenix
My personal opinion is that they are as close to the best that there is in the AVM field
The way my whole procedure was completed was nothing short of top notch work - from how they put me back together, to the counseling I received from the neurosurgeons themselves
With the amazing quality of their work & nothing short of amazing luck I get to be here the way that I am today
I truly believe that in anyone else’s hands, the outcome of my situation would be not so positive
I am from Calgary Alberta Canada
Hi! We are from all round the world. English-speaking and non-English-speaking. If you ever want to see where a user is from, you can click on their “icon” or “avatar” (which is the little picture or initial letter in a circle, so mine is a “D” on a green background) and it gives the summary information you typed in when you joined.
For me, I’m from Leicestershire in the UK. Beautiful, sunny, Leicestershire.
Actually it’s is cold and grey and turning somewhat unpleasant today but it is a very average, very temperate place overall.
The coronavirus hasn’t affected me as I had my treatment about three years ago. I hope you are doing ok…
I’m from the western half of Michigan - about half way between Grand Rapids and Lake Michigan. I’ve been dealing with this thing for a long time - been to Mayo Clinic in Rochester 3 times (separate procedures, years apart), University of California at San Diego and Spectrum Health in Grand Rapids (3 times). I’ve been dealing with this for so long that the "experts when I started are now listed as faculty emeritus on the school of medicine’s website.
How has Covid affectived my journey? It has made it much more anxiety filled. There’s a lot of times where I would love to go to a local coffee shop and write and eat a cookie and drink free refills of ice tea, or go to the township library. But those places are too dangerous due to CoVid, so instead I hide out down in my basement. So, CoVid has made me more of a recluse than I would be otherwise…
I am from Ambrose, Ga. I am being treated at the Mayo in Jacksonville, Florida.
Saint Petersburg, FL
We’re from Israel.
We traveled to Barrows for Dr Spetzler to treat my daughter 12 years ago!
We are from Maryland. My son’s surgeon is Dr. James Suen in Little Rock, Arkansas.
I’m from the S.F. Bay Area. My surgery was urgent, as my AVM had ruptured. My neurosurgeon, Ted Baiz, M.D., (R.I.P), pulled off a miracle…27 years ago, at Peninsula Hospital. I would recommend UCSF Medical Center, Neurosurgical services, for AVM diagnosis and treatment today.
COVID-19 has made it more difficult to fill my days with the activities that make life more pleasant. For example, the animal shelter where I spend a couple of hours volunteering, is closed to volunteers at this time. Socializing is off limits everywhere.
I have lived in Houston, Texas all my life. Both of my surgeries were performed by Dr. Pedro Caram, Sr in 1973 at the Methodist Hospital in the Houston Medical Center. Dr. Caram has passed away since then. May God rest his soul. I was 16 years old when my AVM ruptured. I still remember him fussing at the nurses for using the wrong kind of tape on my head. I am 63 now. I have a few issues with the scar tissue(seizures, memory loss, migraines) but I feel very fortunate just to still be here. Craniotomies were the only treatment back then. MRI’s had not yet been invented. God bless you all. Vicki
I’m from Milton Keynes, UK.
Mcallen Tx and treated/cured/etc Harlingen Tx & Edinburg Tx.
Wow what a story and journey! I think it is awesome that they were able to treat you without the technology they have now. I too have suffered seizures, chronic migraines, and aphasia due to my surgery and recently learned the AVM damaged my hypothalamus and surgery further damaged it causing me to develop narcolepsy-like symptons. But I am grateful to Jehovah God to still be here and look forward to his kingdom being the permanent source of relief from all my deficits, complications and symptoms. One day soon we all will never have to mention AVM again for we ALL will have a cure from HIM. Personally for me that is how I have managed to deal with the emotional scarring, damage, and symptoms related to having my whole life upended suddenly. We are survicors but soon we will be healed. I cant wait. Paradise is “just around the corner!”
Simply amazing! And, I thought I was one of the oldest survivors here! My AVM ruptured and I had surgery in 1993! We are both EXTREMELY blessed to be alive. It’s an honor to say “hello” to you!
It is with great honor and respect that I hand the torch over to you. Until this exact moment, I have no recollection of having met anyone who has been dealing with an AVM (and still dealing) longer than my 42 years. I had my first surgery at Mayo in Rochester in 1978 - they were, I believe one of four in the country and Rochester is closer to Michigan than Houston is. So congrats on THAT! At that point, my AVM was in my left neck and shoulder and hadn’t moved into my brain yet. So my first scar was an upside down Capital T that ran from just behind my left ear, down to my collar bone and then an equal distance each way. I’m 55 and up until 2018, “a few issues” would describe it about right. Brain surgery went right to reduce the risk of a brain bleed but the side effects were and still are a itch…
Hold up your right hand facing you (everybody can participate) and draw a straight line from between your 3rd and 4th fingers straight down almost to your wrist. About an inch from your wrist and about a half inch from the side of your hand is where, on a very simple map of MIchigan, I live.
Sorry, Life, but your 1993 doesn’t cut it. I had three separate surgeries, embolizations, treatments before that. 1978, 1986 and 1987. (thinks, wait, I really don’t want to win this contest…)
Can you share more information about the narcolepsy thing? I am exhausted all of the time but I have times - sometimes multiple times a day where I will be typing on the computer and I am exhausted but suddenly I will look at my screen and it saysssssssssssssssss
I’ve even had it where I must have felt really passionate about something because I fell asleep and left 4 rows of !!! on the screen. So far, when I’ve mentioned it to doctors they haven’t seemed concerned and have just told me to be careful.
Any thoughts, wisdom, humor or swear words that seem to come to mind?
My wife is currently recovering from CoVid - it’s like she had a really bad cold for 2 weeks now she seems to go into a feverless flu type of thing every couple of days. The only way CoVid has impacted me is the nerves that come from having a wife and two daughters who work at hospitals. I would say 1 is a front line Covid person and the other two are 2nd line. So that’s a stress. Plus my pulmonologist has said that because I’m basically living on 1 1/2 lungs and an impacted neurological system, I am no more likely to get it but if I do, it’s more likely to be a worse case of it. So correspondingly, I’m a hermit in the suburbs. If I go anywhere, I do the curbside pickup or I have someone else pick it up or “hello Amazon.” And I think I have now officially rambled too much…
YOU WIN, TJ127! (“Win”?)