Need support

Hi , went for a 2nd opinion and now im so confused. First dr recommend radiation and 2nd dr said surgery. I have an avm .i know there are positive and negative to both .im scared to have surgery.

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Hey @Lilly

It makes perfect sense that it doesn’t exactly help that one doctor recommends one approach and another recommends a different one.

Did they give reasons for their approaches? It may be a good idea to introduce that another doctor has indicated the other approach and why do they prefer theirs to the other guy? If they get difficult with you about consulting elsewhere, I usually take this to be an indication that their primary interest is their income rather than you as the patient.

Another route you may have is to get a third opinion. Sometimes this is expensive and/or not supported by your insurance but some of the major neurology practices of the United States offer a remote second opinion programme, whereby they will offer an opinion on the reports and images that you have remotely – without you having to travel – for a nominal fee. I think the last time I looked, it was about $200.

What reasons did each doc give for their approach?

p.s. I’ve got/had an AVM, so you’re not alone there, either.

Best wishes,

Richard

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Lilly, I know relatively little about AVMs compared to aneurysms and @DickD’s knowledge and experience of them. I do have a bit of experience under my belt with procedures and there is always concern with any approach. I’m fortunate, I think, that I had no pre knowledge of aneurysms prior to my rupture, didn’t have to be concerned about finding the right surgeon and lucked out beyond belief with the Neurosurgeon I have as compared to the members who have an incidental find.

I would follow @DickD’s advice and ask each of the two specialists why they believe their procedure is the best route. I would make a list of questions with help from people I trust and send it to the specialist through your patient portal. One of those questions would be the risks I would have to undertake for each procedure.

If you decide after their responses you determine another opinion is needed, I would ask the members here and at https://www.avmsurvivors.org/ for recommendations in or near Rhode Island. They may know of a specialist that works with AVMs. The members at AVM may have experience with one in your area which is always good. I know my Neurosurgeon, Dr. Stacey Quintero-Wolfe at Atrium Health Wake Forest Baptist Medical Center in Winston-Salem NC is quite sufficient when it comes to AVM’s, she is actually an expert in them I’ve been told. I know she will provide an opinion for anyone in the world if she is sent the images. I don’t know what she charges, several years ago when I asked, there was no charge. However WFBH merged with Atrium Health, thus the incredibly long name and a lot of changes to things.

I also know there is a hotel that provides a reduced rate for patients that is close to the medical facility. The doctor or their assistant calls them and the patient then qualifies for the reduced rate. There is also the SECU House that if you give them enough notice, usually two to three months, they can fit you into their place. SECU house also provides transportation to and from the hospital for about 10 hours a day. Many hospitals have some type of partnership with places for patients to stay. I have a NC county badge from when I worked and can get a reduced rate at most hotels in the State, and many also have a military discount. One just needs to ask…

Remember to breathe and focus on positive things. Not as easily done as said, practice helps a lot! I hope members from your area will know a specialist that works with AVMs and can share the name of the specialist.

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Hi, I had a cranial siting Dec 2021, removed 3 benign tumors in frontal head. I did fine. Than I had aug2,2022this year-I was told radiation was to risky so I had surgery again-this time it’s been a month now but I have double vision and weakness on my right side. Dr said it’s caused by nerves-swelling in brain has to go down but I still have to use Walker, still have double vision so I’m worried if that will change or not. I hope it does. Hopefully it will but wondering. This tumor removed was pressing against my brain stem. Any one ever have this issue with any brain surgery thanks

Hey Sandra,
My name is Merl I’m a member of the Modsupport Team here on Ben’s Friends and I too have had multiple neurosurgeries. I also have a shunt to drain the fluid of my brain as a permanant fixture.

The medicos gave me a recovery timeline of 6-8weeks and I was really disappointed when that 6-8wks passed and my symptoms were still crazy, wild. I got myself back to work but on restricted duties and restricted hours. Then I had the 2nd surgery and thought the recovery would be the same, but it wasn’t, months passed. I tried to force my recovery, pushed my limits, build some stamina. I ended up pushing too hard too soon, something went ‘pop’ and I was back on the operating table again.

My wife, ohh she was annoyed with me, she knew I was pushing and after the surgery she kept me under (some sort :grinning: ) of control for a while at least. It took a while to get back to anything like normal, but I did. I got a new job and for about 15yrs things travelled along OK

Then in '13 it all went upside down. That year I needed 3 operations and the end result has been devastating. I’ve been unable to return to my former profession. I seem to now be on a bit of a seesaw of symptoms and no 2 days are the same, I’ve often explained at as

Some days I could leap a tall building in a single bound,
But then some days I’m lucky to be able to crawl out of bed.
I just never know what today will bring

I know that if I do too much today, I’ll be paying for it tomorrow. But I don’t have a level of how much is too much, so it can be a real balancing act at times. Sometimes I don’t see that I’ve reached my limit, but “She who must be obeyed” (my wife) she can see it clearer than me. It’s my eyes that give it away, so she tells me. My right eye starts to droop and symptoms progress DOWN from there.

As I often tell other members, when it comes to multiple neurosurgeries it’s not that the symptoms from one surgery add to the symptoms of the next. For me, those symptoms, those side effects have multpilied each other and brought on weird, odd symptoms that, according to the medicos, aren’t even related to the neurosurgeries. I get visual and audio effects, my balance is a mess. My temperature regulation is all messed up. I get these intense tingles in my hands and feet, often just on one side, like pins and needles on steroids. Then there’s the headaches, OMG intense headaches, just WOW. So that’s some of my side effects.

You state your last surgery was early August, it is still very early in your recovery and although the dr’s may have given you the obligatory 6-8 week timeline, that’s often just for the melding of the bone and the healing of the skin wound. The brain itself can take longer, MUCH longer to recover. How long? There simply is no answer to that. Some can recover really well, really quickly. For some it can take a bit longer and for some there can be ongoing issues.

I would suggest you speak to your medical team about a referral to an ophthalmologist for your eyes. There may be exercises/tasks you could do to assist realigning your sight. The ophthalmologist may be able to establish the best or better ways to manage.

Hope it helps
Merl from the Modsupport Team

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Thanks, that makes me feel better, I got worried about my last brain surgery- the first I was up moving ok of course took each day as a new- took me almost 2 months for my energy! I really got alarmed about my right side weakness! At first I couldn’t walk at all than had some pt and walking on walker I’m hoping after another month to get better- I have the tingling pin & needles too right side! I go back to my nurse dr October this year, I made appointment already to see about double vision hopefully to get glasses that help! Praying my balance gets better too. I will be praying for you thanks so much for your help! It does encourage me

This recovery thing is a slowly, slowly process. NO!! I mean S.L.O.W.L.Y.
Do Not Push Your Recovery The consequences of doing so are not worth it.
The more time you take now to fully recover, the better the long term outcome. So, slowly.
I am not a patient person, not with self, I wanted it right and I wanted it right NOW and I pushed to get it.
And now, I pay for that every day.

Merl from the Modsupport Team

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I have a benign tumor on my pituitary gland, it’s called a pituitary adenoma and she watches it grow every five years, eventually it may have to be removed, but it’s not effecting much except my weight right now. As for recovery from the procedures I’ve had for my rupture, each one except the last with the stent was incredibly longer than the one before. As Merl said, it takes a long, long time. You must be patient with yourself. I still have days where I back slide but I keep moving forward, you will too!