The doctors have told us that Leona's AVM is one of the rarest you will find, " that worries me"

Thank you for your messages, it is appreciated !!! I have not had chance to reply in full so i do apologise for that.

The doctors have told us that Leona’s AVM is one of the rarest that you would find, I find that worrying.

Leona had her appointment at Macquarie hospital today, the outcome although expected was still a huge shock. The process was explained in detail, and it turns out that the Gamma Knife treatment will not be an option.

Leona will be admitted to the Macquarie Hospital on November 14th, a Craniotomy will be conducted on the 15th. This procedure will take over 8 hours, following this will be a week in intensive care, Leona will spend 2/3 days of this in an induced coma until the swelling has reduced.

We have been told today that there is a 70% chance that this could be successful, furthermore that the problem could be completely removed. However their is a 30% chance it could go wrong !

As for Leona’s signs and symptoms, slurred speech, memory loss and loss of feeling will be permanent.

Recovery is going to take time, it will take Leona around 6 weeks to get back on her feet after the operation. I expect 2012 will be a year of recuperation after this surgery, but on a good note Leona should be able to go back to work.

I am not going to beat around the bush, but you can imagine how scared Leona is about the whole procedure, and the fact she will have her head shaved.

I will do my nest to reply to your messages, if you have any advice please feel free. As a husband and father I really do not know how to deal with this situation.

Hi Michael,
While I cannot even imagine what you are going through at the moment, all I can say is that you need to ask all the questions you can think of to clarify for yourself every step of what your wife is going to face. Get the information from the doctors, beware of “over-Googling”, the lack of context will just scare the crap out of you.

As to the last line in your post, you don’t have to go through this alone. You can vent here all you want.
/Leigh

My best wishes to you and your family. It is a tough struggle.

Pls keep us up to date as best you can and don’t feel badly if you can’t respond to messages posted here, we understand.

Ron, KS

Michael,
I know both you and your wife are scared. That’s very normal. Don’t bother with the percentages they will just serve to drive you crazy and your doctor has to tell you something. (But if you have to look at numbers 70% is good and your doctor wouldn’t say if it weren’t true.) The advice from LLC1138 is reciprocated. The internet will just scare the cra* out of you. Most people go straight to the internet, my mom did too. If you want to learn about AVMs there are plenty of links on here, doctor recommendations, medical references as well as people that have been through it all. Just focus as much as you can on all the positive things that could happen. It will serve Leona well too. And tell her that having her head shaved is nothing…it will grow back, trust me. :slight_smile: If you want to vent or get answers or both, you can always do that here. Plus don’t be afraid to ask your doctor if you have a question or just want some clarification. Hope this helps in some way and best of luck to you both. Let us know how it goes!

Michael, my thoughts and prayers are there for Leona and your entire family! Stay strong and keep in touch with us letting us know about Leona’s journey!

Hi Michael. Doctors always give the worse case scenario in order to protect themselves from a lawsuit. Please do not focus on the 30 percent…your wife is a fighter and a strong person. At least you do not have to move during the operation. My apartment lease ran out on the day of my craniotomy. My then boyfriend now husband had to pack up my things and move them to a storage unit during the operation.

First of all, my thoughts and prayers will be with you!! Second – I can understand – 20+ years ago, my AVM was inoperable, so it was kindof rare. There was only 3 places in the world that had the procedures to help me, and my insurance wouldn’t let me go to Switzerland!! My son was only three years old at the time, so I stayed with my mother for a year after so my husband could work. The side effects are the same, but at least the doctors stopped it from hemorraging again. I am working – only 16 hours a week, but it gets me out of the house and among people. Oh – and hair grows back!! Until then, my husband bought me a scarf!!

You – just hang tough and be there for her!! Just take it one day at a time!

Agreed! But, in the +ve of "when life serves up lemons…"
Try this on Leona - http://www.fashionscarvesandshawls.com/
/Leigh

Hi Michael, Welcome… I know exactly how you feel. My sister had her bleed In aug, unfortunately we didnt know about it until it had already bleed. It was very hard on the family. She is 33 and has a 12 yr old daughter. Her daughter was the one that called 911 when she saw her mother having a seziure. My niece didnt realize how had my sister was until she noticed her mom was staying in the hospital and not coming home. Thankfully the doctors always kept us hopefull when my sister was in a induced coma. My best advice is try to keep your childrens schd as is. We didnt changed anything for my niece, before my sisters bleed my niece was seeing a theropist anyway but it worked out great because her theropist was also involved and did at home sessions.

My sisters avm was located on her Right frontal lobe, where her AVM was located only controled her behavior BUT her deficits would have been leftside weakness, right side blindness, temp memory loss and behavior change… After my sister was woke up from coma she had a embolization which they were able to glue 85% of the avm vessels. Alittle over a month after her bleed they did the crani (oct 5) She was in icu for 3days then put into a reg room for 5days. She did 1wk 1/5 of in patient rehab she is currently home. She has been home for 2wks and is doing well. She is at a out patient rehab for to strenghten her legs and takes occupational theropy for her memory. Other wise is doing very good her short term memory isnt perfect but its getting better. She has to take Keppra (Anitseizure meds) for 6month to a year. If she doesnt have a sizure with in that time she can stop the medication. She also can not work or drive for 6months.

The summary of all is, AVM’S can be beat. Dont lose hope. Like the survivers and family memebers on this site use to tell me. Ask your doctor questions, be patient, have faith. Its going to be a long journey for u esp bcause that ur wife and she is coming home to you but believe that she will pull through it. Her children will give her the strenght so as she recovers from her procedure have them around…

Good luck and ur family is in my prayers…

NINA

Hi Michael,

Thanks for sharing the update on Leona with your AVM family! We know just how worried and scared you and Leona must be as you prepare for the upcoming surgery to treat her very rare condidtion that some of us have been blessed with. Please know that your AVM family will be here to support you, Leona and your family thru this. This site was a major lifeline for me when I was first diagnosed with my AVM and still is as I continue to go thru my treatments and know that I will be AVM-FREE someday soon :)! Like others have said, please stay away from any research on the Internet as I also did this and what I read just terrified me even moreso. What I have learned from this site is that those of us with an AVM are benefiting from the miracles of medical advancements and our medical community now knows how to treat this rare condition that some of us have been blessed with. The docs do have to explain all of the possible side effects to surgery or other AVM treatments to protect themselves yet I feel that most of these side effects are just as rare as being diagnosed with an AVM yet they have to explain both of the extremes to the patient and the family. Leona and you will certainly be in my daily prayers and please do keep us updated on her upcoming surgery on November 15th.

Many blessings to Leona and you!!!
Michele

I have been alive 52 years after the AVM craniotomy. At the time the neurosurgeon did not even know what he was looking for. They called it an exploratory brain surgery. They found it, and removed it. I lost vision, and some stuff that makes me a little goofy, but I am funny. Hang in there.

beans

Hi Michael, I am nearly 6 months post crani. And yes I have a few problems but I am AVM free, I am alive. I had over 8 hours surgery, I had a week in ICU and a week on the ward, then rehab. I also was at the same hospital with the same doctor, he and his team of doctors are fantastic. The op is not fun but is not as bad as it sounds. the best advise I can give is to be POSITIVE that she can do this so she will feel positive and you will all get thou. I know how SCARED she is, I can't imagine how scared you are. Keep us updated.

Kia Kaha

DM

The scariest part for me when I was a kid was having my whole head shaved, too. Please tell Leona it grows back fast. I am 61 and have hair down to my waist and it is still brown (with a little gray) and I wear it in braids and it is curly. If you look at my page here on this website, you should see a picture of me when I was 12, about 2 years after the AVM surgery.

My thoughts are with you
beans