Treatment in a foreign country, what to do?

I suffered a bleed while in France on November 25, was in ICU for 2 weeks regular hospital room 5 days. Am resting at our rental home now, thankfully with husband and my 3 children (19, 7, 5) next week, January 6, I have an appointment with professeur (what neuro surgeon called here ) for MRI and treatment options to be decided. I had 2 ct scans and angiogram while in ICU. My avm is big, deep in right frontal lobe between 2 arteries, one dr. already mentioned embolizations and radiation therapy as a possibility. My desire is to return to Toronto. I am apparently unable to fly yet. But was told it might be possible to begin treatment here, then would be able to fly to continue at home in Toronto.
I guess what I am thinking, wondering is since I have to put my faith in dr. here, do I just start here, trust their opinion, will it be safe to fly? What do I do?
I will know more after MRI, I suppose, but getting there is like torture. I have horrible headache, nausea, dizziness daily, but am trying to be strong for my children.
Am confused about all the recommendations for multiple opinions, especially when I am here, not fluent in French (though husband is) and my oldest son returns to Toronto January 7 (he is such a big help here, but he is in university) and I want to return to Toronto so badly. Was supposed to go back day after my bleed!
If anyone has some advise, if you can make sense of this long question, I would truly appreciate it. …

Wow,tough questions. Welcome to the group, by the way.

An AVM bleed on an airplane would not be a good deal. Drs might not want you to fly at all. I think you'll at least need to hear what they recommend.

Best wishes, and keep in touch here please.

Ron, KS

Have you contacted your GP back in Toronto? Maybe getting some input and advice from a doctor you are familiar with will help you feel better.

But ya, wow. Talk about feeling even more freaked out than you do from finding out about the AVM to start with. Yikes. Not ideal in an emotional way. How awesome that your family has been able to stay there with you for the past month. I agree with Ron. Listen to their recommendations and after the MRI you will have a much better understanding of "what" may be necessary. Look at the stories here on the board. Many people have flown after bleeds. Many people have waited months to have an embo or radiation. And many have needed them right away without being able to wait or fly or anything. It all depends on how stable they "think" the AVM is. No guarantees...only best guesses. And honestly, I think one of the BEST AVM docs is actually in France, although I've forgotten his name :) But that's a good sign.

Bottom line. Whether in France or Canada, just make sure your doc is knowledgeable about AVM's and is able to explain everything to YOU so that you understand the intent, the risks, the benefits...and that YOU can make an informed decision.

Good luck!

Shalon

Please know others are with you. The nausea, headache etc. may be from the pressure of the blood clot, ie the bleed. With time it will diminish. My young son had severe headaches with vomiting after his bleed. We had to wait approx. 2months before they could embolize and operate. I do believe the newest embolizing agent "onyx" was developed in France. Have someone google it and find the best Hospital for treatment in France.

I strongly believe in multiple opinions for optimal treatment. But perhaps the embolization is acutely needed prior to your travel back to Toronto. I believe the MRA, and ct scan will see if the bleed is reabsorbing itself. Though it takes time. Try to relax and let your body heal, so impt. during this difficult time.

Please know you will get better and try to allow your body to heal prior to the next plan. Rely on others to help you during this time and know you will get better.

Keeping you in my thoughts and prayers.

Wow is right...being in another country..What I did when I found out I had an AVM was go online and find the best AVM specialist I could find and I was very lucky. Since Shalon (who is extremely intelligent when it comes to AVM's) said there are the BEST AVM docs France, check that out first. You absolutely will need your husband by your side if possible. Then if you feel safer being in Toronto, go online and see who the BEST is there.

My neurosurgen did say I could fly, however, you always have to check with them first.

Good luck and I wish you the best! Keep in touch with us.....Your AVM Friends!


Ron, KS said:

Wow,tough questions. Welcome to the group, by the way.

An AVM bleed on an airplane would not be a good deal. Drs might not want you to fly at all. I think you’ll at least need to hear what they recommend.

Best wishes, and keep in touch here please.

Ron, KS

Thank you Ron, for your welcome and words of advice, I will definitely keep you informed as to what happens on January 6, what Professeur (neuro surgeons called that here in France) recommends and what I decide…only 4 more sleeps until my appointment !!



Ron, KS said:

Wow,tough questions. Welcome to the group, by the way.

An AVM bleed on an airplane would not be a good deal. Drs might not want you to fly at all. I think you'll at least need to hear what they recommend.

Best wishes, and keep in touch here please.

Ron, KS

Thank you Shalon, Life sure has its surprises, doesn't it, and I truly appreciate all of your advice.You certainly are very informed and helpful. The Professeur here is apparently top in this field, I have been unable to successfully google him so I am relying on the word of other doctors here.

I am lucky enough that if I do get permission to fly, and return to Toronto, I will be able to get into one of the top in the field at Toronto Western hospital, so fingers crossed, that will happen soon.

I only have 4 sleeps left until my appointment and MRI, at which time decisions will be made and I do know that I will eventually get a second opinion, my main goal is to get back to Toronto, and at a certain point I am going to have to put my faith, trust in the doctors here.

It is great to have this site, this information, and I do spend a lot of time looking at stories, etc., and it is wonderful to be able to communicate with others who truly "get" the experience....I will definitely post what happens on Thursday and what, if any decisions are made. Luckily, my husband speaks french and I believe the Professeur speaks english so between the 2 of them, the information should get through to me, notes will be taken and I am going to go in with questions, etc. written down. My memory fails me some days....

I am very lucky to have my family with me, we had planned to be here for a year (arrived in August), but because of this I am going to shorten my year here to go back to Toronto, when I can, my family is there, as well as my oldest son and I will have more support there to get through all that is to come....my husband will probably continue to live in France....

Thank you again, will post after the appointment on Thursday....suzie
Shalon said:

Have you contacted your GP back in Toronto? Maybe getting some input and advice from a doctor you are familiar with will help you feel better.

But ya, wow. Talk about feeling even more freaked out than you do from finding out about the AVM to start with. Yikes. Not ideal in an emotional way. How awesome that your family has been able to stay there with you for the past month. I agree with Ron. Listen to their recommendations and after the MRI you will have a much better understanding of "what" may be necessary. Look at the stories here on the board. Many people have flown after bleeds. Many people have waited months to have an embo or radiation. And many have needed them right away without being able to wait or fly or anything. It all depends on how stable they "think" the AVM is. No guarantees...only best guesses. And honestly, I think one of the BEST AVM docs is actually in France, although I've forgotten his name :) But that's a good sign.

Bottom line. Whether in France or Canada, just make sure your doc is knowledgeable about AVM's and is able to explain everything to YOU so that you understand the intent, the risks, the benefits...and that YOU can make an informed decision.

Good luck!

Shalon

Thank you Diane for your kind words, thoughts and prayers, it is so encouraging to receive such notes from people who have had or are related to someone with this....comforting and supportive....which we all need through these times.


suzie
Diane Faherty said:

Please know others are with you. The nausea, headache etc. may be from the pressure of the blood clot, ie the bleed. With time it will diminish. My young son had severe headaches with vomiting after his bleed. We had to wait approx. 2months before they could embolize and operate. I do believe the newest embolizing agent "onyx" was developed in France. Have someone google it and find the best Hospital for treatment in France.

I strongly believe in multiple opinions for optimal treatment. But perhaps the embolization is acutely needed prior to your travel back to Toronto. I believe the MRA, and ct scan will see if the bleed is reabsorbing itself. Though it takes time. Try to relax and let your body heal, so impt. during this difficult time.

Please know you will get better and try to allow your body to heal prior to the next plan. Rely on others to help you during this time and know you will get better.

Keeping you in my thoughts and prayers.

Hi Suzie. My AVM bleed occurred during landing into Miami Int’l Airport. I was a Flight Attendant based in Atlanta GA at that time. I just wanted to get back to familiar territory and be where all my friends lived. After about a month…the doctors let me fly back. If your doctors say it’s okay to fly be sure and tell the Flight Attendants about your condition. I now work for another Int’l Airline. It helps to know in advance if a passenger might have a medical problem.

Hi My name is Art i am the Co-director of The Daisy Foundation!We are based in the Toronto area...our Website is www.thedaisyfoundation.ca We are a non Profit foundation..Who Just helped a little 10yr old get to the Mayo Clinic in MN. We also here to help others with avm or hearing people stories..So we can get the awareness out..As we been doing benefits for the last 9 months to help with more research on avm's and as well as having a avm awareness walk in Brampton ont june 4th....We been aslo doing a Avm awareness tour city to city in Ont to get the awareness out across canada...We also are in the process of getting brochures from the Mayo Clinic sent to us so people can read more about all avms..Plus different procedures on getting treatments for Avms...So if u have any questions after reading our website u can contact myself or some of the reps on our website

Art