2nd opinion... not what I thought... but I'm happy I think!

okay, went to Memphis yesterday for, what I thought would be, the scheduling of my embolization. This Doctor is a specialist in the field of AVM’s, which is what I wanted. However, his recommendation was to continue to monitor my situation and not do anything. He described it as being about the size of a clementine orange (right temporal lobe) no bleeds… only side affects I’m having is headaches, bruits and (what I consider) terrible visions problems. He suggested I go to an ophthalmologist and send him a couple of specific test results then come back in 2 months for another MRI and then we would go from there… I’M THRILLED that I will not be having surgery (at least for now) but also scared… I cried through most of my appointment and he suggested I consider counseling to get through the emotional aspect of everything and get on with my life without living in fear everyday… I had 2 wonderful friends with me who asked questions and took notes while I sobbed… lol… I’m trying really hard to move forward today and be grateful that I don’t need surgery right now… but for some reason I’m still a little scared that I have a time bomb in my head… is there anyone else out there who has just rode out the avm with no real extreme complications… I can live with a headache!! and according to the doctor the risks associated with surgery are far more than the risk of living with my avm (right now) that is subject to change but for now… “nothing” seems to be the best thing to do…

So do both opinions say just wait? That might be the best thing to do, at least for now.

The other part (and I ain’t qualified to say this), but if you are struggling emotionally now, the DR might not want to recommend a harsher treatment based on your emotional state. And DUH–who wouldn’t know what you know and NOT be in an emotional state? I know I was!

Seriously consider counseling. We did it as a family and individually. Anytime you face a life altering event, it messes with your mind and BODY. I’m convinced a lot of good healing happens when you are in a strong emotional position.

If it were me, I’d make the most of it. See the Optho for tests, get some counseling, and when you go back in two months, you might be stronger to face this.

Hope this helps. And remember, I ain’t a DR, didn’t play one on TV, and didn’t even stay in the HI, so my opinion is just that, a lay person’s opinion.

Best wishes,
Ron, KS

Rosemary,
Great news for you, we’re glad no surgery now. You sound like you have a wonderful group of friends with you taking notes. Please let us know what the ophtho says! Take care of yourself!
Marie & Steve

rosemary,
councelling is a good idea…i found it really helped me when i was first diagnoised to come to terms with what had happened …always worth a shot…

counseling is a good thing just find shop a round for some one you fit with then stick with that counslor.

okay thanks guys… counseling seems to be a good idea in everyone’s eyes… have a visit today with the ophthalmologist so if I can get some good results there maybe I can move forward… if not… counseling is the next move!!! hugs****

Ron, My first neurosurgeon actually sent me to a specialist in the field, we were already planning surgery but no one in our area can do the embolization. So I was sent to Memphis to see a different neurosurgeon and he recommended we wait it out and continue to monitor for now. I was really grateful for the 2nd opinion but really surprised at the outcome. My first doc said he wanted to remove the AVM before I had major complications and while I was still young and healthy (50 not so young) but the new doctor says I may never have any more complications than I’m having now and it makes no sense to risk the complications of surgical removal at the present… which makes perfect sense to me… but then again I don’t want to wait if it is inevitable… but I’ve been great since my visit and my headaches have lessened considerably… but today I have those crazy bruits… (swooshing) that will not go away… so annoying… BUT I’m really happy with my new doctor… he has treated AVM’s for many years and seems to be a lot more knowledgeable in the field than my 1st doctor…

hi, i was reading what u wrote and now I would like to know what u think, how are they going to monitor and see how you are doing. I go in about 3 weeks to plan my first embolization. What i am scare of is another bleed and then what would happen ? So how did they tell you whey were going to monitor to see what happens?

Rosemary Weston-Brown said:

Ron, My first neurosurgeon actually sent me to a specialist in the field, we were already planning surgery but no one in our area can do the embolization. So I was sent to Memphis to see a different neurosurgeon and he recommended we wait it out and continue to monitor for now. I was really grateful for the 2nd opinion but really surprised at the outcome. My first doc said he wanted to remove the AVM before I had major complications and while I was still young and healthy (50 not so young) but the new doctor says I may never have any more complications than I’m having now and it makes no sense to risk the complications of surgical removal at the present… which makes perfect sense to me… but then again I don’t want to wait if it is inevitable… but I’ve been great since my visit and my headaches have lessened considerably… but today I have those crazy bruits… (swooshing) that will not go away… so annoying… BUT I’m really happy with my new doctor… he has treated AVM’s for many years and seems to be a lot more knowledgeable in the field than my 1st doctor…

Hi Rosemary,

PEACE AND BLESSINGS !!!

Ameenah

HI!
Have faith. and be strong don’t let anything to disturbed your mind.or tried to have peace. We have tothing positive.Because It could be along Journey. I learned to take one day of the time and lets see what happens tomorrow…I was taking depression meds…in the first couple of months that is what we need…It could work for you…Good luck and god bless…

Hi Rosemary,

Part of this is accepting it so counselling would be a really good idea. Also as long as you’re happy with that/those diagnosis that is a big part of it too - I think you know yourself what and how you want to deal with this, obviously along with medical opinions etc. Everthing carries a risk - leaving it is risky and so is surgery. I agree it’s not troubling you too bad so why touch it. However, if the surgery is successul, you could be free of it and reduce the stress of knowing its there. It’s also worth considering something I was told a while back by my neurosurgeon which is that every year the risk of a bleed increases, so he told me that (at the age of 33) if I left it it would almost certainly bleed and it was (for me) therefore better to treat / remove it now before that happens. Obviously each case is different though - one thing I’ve learned about this particularly from this site is that no two cases are the same it seems.

The main thing is for you to remain strong and positive, although very difficult at times, it really is an amazing healer - positive thoughts.

Good luck and best wishes to you.

Erin

sounds kinda like me !

Hi Rosemary,

Sorry to resurrect an old post, but your reply got me to thinking: I'd almost bet that if you took your blood pressure when your bruit gets louder or softer, I'd bet the pressures are either up or down. If that's true, you have a built in "stress detector" of sorts!

It might tell you that if the bruit gets louder, you need to adjust what you are doing/thinking.

Let me know if this works out please????????????????

Ron, KS

Ron, if I can "butt" in here I can tell you that the bruit that I have most definitely is a stress detector. If I get mad and my heart rate goes up - so does the bruit. When I calm back down, so does the bruit. If my heart is acting up, as in skipping beats, so does the bruit.

Jenny

That's cool!

As Chari had each of 4 embolizations, her bruit became quieter. After the surgery to remove the last of the AVM, her bruit was GONE.

Strange as it sounds to us, she missed it. It had always helped her relax and go to sleep at night. Now quiet, it kept her awake!

In my mind, keeping your BP stable/low should help prevent bleeds, so having an audible warning signal has to be a good thing, if you have to have an AVM.

Best wishes,
Ron, KS

Hi Rosemary,
Sounds like a reasonable plan & as long as you are comfortable w/this direction, that's what counts! :)
Very best wishes,
Patti