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AVM Survivors Network

Negative doctors

#1

My husband was diagnosed with multiple spinal avms. Biggest being at t4. We saw a neurosurgeon at the Gold Coast hospital after royal brisbane said no to our referral - we live on the wrong side of the Brisbane river. The Gold Coast doctors first question to us at our appointment was ‘why are you here?’ I thought that was obvious. He told us the the smit likely outcome was that sometime int the not to distant future my hubby would have a stroke in his spine and would become a paraplegic as a result. The said there was nothing they could do about it. And basically that was it. Because my husband has undergone heart surgery, and has a metal ring in his heart, he told us WE should get clearance from the heart surgeon for an MRI and once we had the letter request an appointment with him and they will consider doing an MRI. Was great news for Christmas. We saw out GP yesterday and he is referring us to the PA in Brisbane. We are lost at what to do, what it all means and where to go from here.

#2

Hi Jules,

Sorry you got that news around Christmas time. I had 'Brisbane's best' neurosurgeon throw an article across the table at me about avms (one he'd written that was about 25 years old!) and tell me my avm was inoperable and there was nothing to do but live with it. He was horrible and I thank God I didn't listen to him.

If I can give you some advice it would be:
1. Find a specialist you trust. This may mean getting a second, third, fourth etc opinion. Your husband and yourself need to be comfortable with the specialist that's treating your husband and that might include someone interstate (such as Professor Michael Morgan in Sydney). Also ask to go on the cancellation list if it's going to take a while to get in to see a specialist.
2. Research, research, research - luckily this site and the web is great for that. Research to get as much information as you can to understand the situation (not always easy when you've been told such awful news) and to ask the questions you think you need to. Also, if possible, research which doctors may be the best for your husband to see. I'd also recommend writing down the questions to ask the doctor as it's so easy to forget something when you're having a consultation.
3. You may need to take control of the situation to get things moving. So, while I don't think you should be the one to get the clearance before doing an MRI, it might be quicker if you email or ring the heart surgeon and get the letter or an email etc with the clearance. I had to do something I didn't think I should be doing last year when they thought there was a possibility my avm was regrowing. My neurologist's receptionist rang me to see if I would post my scans to my neurosurgeon myself even though they said they would do it and they had one lot of scans at my neurologist's office. I couldn't believe we had to go in to pick up one of the scans and I was mailing the scans (given the fees I pay!), but it was quicker if I did it myself and I could be assured they arrived.
4. You've mentioned the Gold Coast hospital, PA and Royal Brisbane. Im not sure if you have private health insurance, but there are neurosurgeons at the Mater and Greenslopes and both do MRIs. For example, Dr Robert Campbell and Dr Martin Wood are at the Mater. Dr Campbell operated on me when I was unfortunate enough to get a staph infection after my neurosurgery in Sydney and he's great. Dr Campbell's website is http://www.bcnc.com.au.
5. It's not easy with the news that you've been given, but try and hang in there. This site is great for support and there is an avm extremity group (for non-brain avms) on here as well. It might be worthwhile joining that group as well.

I hope some of the above is useful (sorry if it's nothing new) and I'll be praying for you and your husband. I hope you can find a doctor who can help.

Cheers,
Lou

#3

Never give up hope. Keep looking for answers and get as many consults as you can with very experienced AVM specialists so you can make educated decisions about treatment. I think alot of us have probably been told by some doctor that there's nothing that they can do. I was told by Mayo Clinic in U.S.A. that I should just go home and live with the AVM I have on my head and ear and they would observe it once a year. Wrong! I finally found an AVM expert and had surgery that saved my life. So don't believe just one doctor's opinion. God bless you. Don't give up! Kim

#4

First, I am sorry to hear about your husband’s Spinal AVM. My daughter has a huge spinal AVM that has been embolized. The way the doctor treated you is apauling and I would seek a second if not third opinion. I would recommend seeing and intervetional radiologist to see if his AVM can be embolized which is significantly less invasive than surgery. My daughter had a spinal stroke and trust me when I say that you want to avoid that at all cost. We were treated at Washington Hospital Center in DC by Dr. William Banks, one of the best interventional radiologist in the world. I hope this helps and if there is anything that we can do to help or facilitate your coming to DC for a consulation, please let me know.

Margarita.

#5

So sorry you and your husband are going through such an ordel and yes these doctor are inconsiderate and without compassion. God is in charge so have no fear, get other opinions from physicians and specialists in this area who you trust and feel comfortable with. My prayers are with you and your spouse remember keep the faith and pray dilgently god will grant you on what you need.

#6

If I’ve learned anything from this experience, it’s that doctors and nurses are pretty much the most negative people in the world. They are scared to tell you something will happen & then if it doesn’t happen, you’ll blame them or they’ll feel horrible for giving you hope, so they will often give you a worst-case-scenario prognosis instead of a more realistic one, at least from my experience. I’d just advise getting more opinions and doing more research. I’ve been told to give up, that it was hopeless to try and be able to do the things I did before, but I didn’t give up, and I’ve recovered almost all of my previously impaired functions. You can do it, don’t lose hope!

#7

Did they say it's completely inoperable, or just that they can't do open/conventional surgery? What about gamma knife?

#8

Wesley Hospital has an Interventional Radiologist- Dr Duncan Walker. Also I see a vascular surgeon at Wesley. There are only two Interventional Radiologists in Queensland. One at Royal Brisbane and him. Hope that helps
Lesley

#9

Thanks Lou, your information has been a big help. At least I have some kind of starting point. Unfortunately we do not have private health insurance so are at the mercy of the public hospital system. :(
Again Thanks for your info.

#10

Thanks for your reply Margo. I am in Australia so DC is a long way off my radar. I also believe the treatment we got was appalling. At the very least, we have questions that we need answers too. Here's to the journey of finding some answers

#11

Thanks Ninibeth. We are certainly hunting for a 2nd opinion and a 3rd or 4th if necessary. At least for answers if nothing else.

#12

Worst case scenario was all we got. I am ok with accepting that the damage done is not reversible, we can live with that. What I am NOT ok with is that preventing more damage doesn't seem to be an option. I wont accept that. When I asked the DR what we can do ourselves, his suggestion was that my husband avoid falling over. My husbands requires 2 walking sticks to get around.....he falls daily so that advice was useless!

Hope is all we have and we wont be letting it go.

#13

All we got was "nothing can be done" live with it. No treatment was mentioned, no possible treatments, no nothing. Hopefully we will find someone who is at least a little more open to discussing options or explaining why not.

#14

Royal Brisbane Neuro have already refused us a referral. But that wont stop us trying again.

#15

Could he use a wheelchair instead??

#16

I Would see if you can get into see the interventional radiologist, embolization maybe a good option. I figured out later than you were in Australia. The ofer stands however, if push comes to shove and you need come to the USA, you are welcome to stay with us… It has been a long journey with our daughter, at one point she could not walk (spinal shock. Do not accept that damaage is permanent either, we did a year of intensive Rehab and gain a lot back that was lost. Unfortunately, she has never (and most likely not) regain use of her bladder. We can live with that. We had a horrible first experience and she was actually misdiagnosed while she was having a bleed in her spine. Do not give up, turn over every stone. This community is amazing and we are all here to help and support each other. You can get tone of resouces here and learn from those who have been through this. I hope this helps and I hope you are able to get the care for your husband that he deserves.

Margarita

#17

We use a wheelchair for any distance. He prefers to keep walking for anything that won’t tire him out or cause to much pain.

#18

No worries Jules. I really hope you find a doctor who can help and whom you trust. Glad the info was of help.

#19

Oh my gosh.. I am so sorry... this makes me very mad... Please do find another doctor! I had a very similar experience with the first neurosurgeon I saw... He told me and my husband in a very insensitive tone "just go home and enjoy the time you have left, i cant do anything for you". and didnt give any information etc etc. I do hope that you find another doctor and dont give up until you are satisfied. In the mean time, you can ask any questions you have on this forum, so many people have become quite pro active and educated in this condition.

#20

, Hello Jules I am Bundaberg, sweetheart, keep trying dont give up and above all don't accept second best...im currently trying to find a professor of gastroentrology ,who will ( or probably will NOT)lazer my AVMs in the Gastro intestinal tract.
I have a bone marrow disorder as well that is not fixable, where my bone marrow cant make enough red cells, so between that and bleeding from the AVMS I am in a pickle but I am pushing on and sometimes I feel I could obliterate all doctors I get that frustrated, thalidomide was recommended ai try on this site,I researched it Italked to my doctor about it ,he wrote the script,BUT it is $1700.00 for 28 capsules!!!!

i am going to try the manufacturerhere, I have tried india, Canada, with no luck. it is only available for multiple myeloma in this country even thoug it was discovered in this country and that frustrates the heck out of me as it is the only recognised form of treatment ,for AVMs in the GIT....this site helps keepme "trying" when I see othersin the same boat...so sweetheart please just hang it is a sad fact but We have to all get in there and help each other, good luck with your trying, stand up for what you believe in

god bless you ...