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AVM Survivors Network

New Neurosurgeon


#8

Julie,

Hi. I’m sorry to learn of your predicament and how your AVM affects you. I wish we could sort all these things out through love and prayer!

The one thought that occurs to me is that a handful of US neurosurgery hospitals do offer a “second opinion programme” and would give a high-level assessment of whether they agree with your new neurosurgeon or whether you are more operable than he is saying. Such a thing can be done by sending reports and images from as far away as Australia for about US$100 or US$200.

It seems likely (given the scale of your AVM) that you’d only get an affirmation of your neuro’s view but if you wanted to get a view, an alternate view from respected hospitals, you could potentially do that from your armchair.

There are references on this site to second opinion programmes or via Google. If you want to consider it but can’t find how, let me know and I’ll help.

Very best wishes

Richard


#9

Hi Richard, my last neurosurgeon said that I shouldn’t be here, keep saying I should be dead. My scans have been sent all around the world and everyone came back with the same answer inoperable, but we were thinking about doing that again I would love your help if you don’t mind
Regards, Julie


#10

Here are two…

Both used by people on this forum and both seem eminent.

Richard


#11

… and another…


#12

Thank you, I know that my scans were sent to the Mayo Clinic years ago by my childhood neurosurgeon and came back inoperable it would be nice to see what they have to say now


#13

Hi Julie
I believe Prof Morgan may be retiring as I read it on the Macquarie site. Do you see anyone else at Macquarie? I see Dr Assaad as he worked with Professor Morgan.


#14

Hey Carol, Prof Morgan is retired I did see Assaad, he said he’ll operate but I’ll be lucky if I survived, I saw Dr Benjamin Jonkers last he also worked under Prof Morgan, but I don’t go in expecting a neurosurgeon to say that they can


#15

Hi Julie
You are very brave to be doing this for so long. I am on Keppra, it isn’t a nice drug but tolerable. I have thought about getting the second opinion as Im not sure what to do. I hope you can get some answers as to what you can do. It must be difficult especially with the different drugs you have to take as well.


#16

Go to Barrow Neurological Institute for 2nd opinion. They are life-savers. Provided me a Christmas miracle…honestly.


#17

That’s the doctor am having my embolisation with. Glad to hear he’s famous.
He’s doing my angiogram on 8th January.
God bless


#18

Hello Zarah,

I am glad that you have found Dr. Hudák István, you will be in the best hands, he is well experienced he has done over 17.000 DSA interventions, I have met some of his patients while I was hospitalized in the Military Hospital from Budapest and he is a genius, he solved very rare and difficult cases, he has unique techniques to approach and embolize big AVM’s. And beside his knowledge and experience I would like to emphasize his great personality, he is rational, very kind and encouraging with his patients, he takes time to explain everything, you can ask him about anything that is unclear regarding your case. He earned my trust as I met him for the first time, I did my own research for 3 months, I had lots of questions, I have already consulted many neurosurgeons from my country (Romania) and Austria and after all I personally choose him to treat me. It was the best decision, I can strongly recommend him to everyone.
You don’t have to worry, I suggest you to write down your questions and ask him about anything, take his advice, I am sure he will come up with the best solution for your case too :slight_smile:
If you have any questions feel free to contact me :slight_smile:
Kind Regards,

Bea


#19

Hi Bea, thank you for all your clarification and all the information about Dr. Huddak. I have been referred to him through a neurosurgeon in Budapest. He’ll do my angiogram on the 8th January and hopefully will see what surgery he will advise me to have.
If it’s ok with you, can you tell me about your case and what he did for you?
Embolisation or Gammaknife or craniotomy?
Thanks for sharing


#21

Good luck, I’ll keep you in my thoughts. Chris


#22

@Zarah

I’m hoping your angiogram went well this week.

Sending positive thoughts your way…

Richard


#23

Thanks for asking. My angiogram was ok, I felt the discomfort of the contrast dye in my brain and it wasn’t a fun experience. It was also difficult to stay lying on my back for more than 10 hours, now happily back home and trying to rest. Yesterday I forgot and exhausted myself, so felt very tired and lost my appetite the whole day.
Is it normal u feel weak after angiogram ? In morning I feel ok, but once the afternoon hits, am so tired and weak.
The results came back yesterday and say that I don’t have an AVM nor aneurysm nor DVA.
So am meeting with a different neurosurgeon for a second opinion. Dr. Hudák was 100% sure that my MRI was misdiagnosed and the angiogram didn’t detect any AVM.
Am still worried though!
I’ll keep u posted.
My appointment with a different neurosurgeon is scheduled for February, so I’ll let u know.
Have a nice day.


#24

I think the contrast material addles the brain. It may depend on which arteries it was injected into as to which bits of your brain are affected by it significantly. Definitely a bit like a hangover.


#25

Hi Richard,
Hope you are fine.
Just wanted to check with you if it’s normal to feel a little nod underneath my skin close to where the incision happened?
There’s actually two small ones.
I just realized that and doctor didn’t say anything about it. Shall I get it checked ?


#26

I had similar, actually. I had what felt like quite a hard lump that was throbbing in time with my pulse. I went to set the doc and he was comfortable it was not to worry about, though I am sure he was also ok that I got him to check.

So… worth discussing with a doctor or one of the neuroradiology nurses.


#27

Thank you very much for your reply.
When did it dissolve though.
I’ll try to book an appointment soon with him to check it up.
Have a nice evening.


#28

I don’t remember. I don’t quite remember what he decided the lump was, though I think it was the results of the bleed and was subsequently dissolved again.