Hi, I haven’t posted on here for a long time now. I had an AVM in my brain, but it was operable. It was very risky surgery, and I was given a 10% chance of dying, and around a 30% chance of coming out of the surgery with some deficits as the surgeon put it, but a 60% chance of being completely okay. I took those odds and went ahead with the surgery. Unfortunately I didn’t get the 60%. When I came out of the surgery I had movement issues with the right side of my body, and I couldn’t talk. I would open my mouth but I couldn’t make words come out. Its been a long hard road back, as I have a severe hearing impairment (mostly deaf) as well. But I am now walking and running, I have most of my hand strength and motor control back. Best of all after months and months of speech therapy (one month as an inpatient and another 8 months as an outpatient) I could talk again and now 4 years after my surgery my speech is fluent.
I don’t feel like the same person inside though. And its been rough. My husband didn’t cope well with me going deaf, so when I needed brain surgery that was too much. He never attended any of my rehab sessions, or gave me support at home, beyond making me dinner. There was instead a lot of getting angry at me both for being mostly deaf and for not talking well. For a long time, he told me to “use my words” like I was a toddler. Which was beyond infuriating. I don’t have a big family and want I do have besides my husband and my two daughters are overseas. My husband and I are now divorcing.
Has anyone else had a spouse like this? Who just didn’t step up? Who offered anger instead of a hug, and made fun of you when you were trying to recover? Who said he wanted a divorce a week after you got home after a month in hospital? My daughter describes her dad as providing negative support to me over the last 4 years. I feel bad for putting my daughters through all this.
I am not hoping that anyone else has had my experience, but I am feeling alone and lonely. I’m still not 100% recovered and I may never get there. So if anyone has had a similar experience and can give any suggestions for how to get through this that would be much appreciated. Thank you!
I’m sorry to hear what you have been through. I often wonder if the negative behaviour is associated to fear, not understanding and this shows up in this manner. Stay active! The fact you are back to jogging is great, our recoveries are long roads. I am a believer that my level of activity has helped me in many ways, particularly on the mental health front. Your daughter recognized the negativity, and I would think also your strength and determination to get where you are. I love the saying the there is a reason the windshield in a car is much larger than the rearview mirror! John
Hey @Hotspot ,
I’m Merl, a member of the modsupport team here on Ben’s Friends. I live in Adelaide, SA. For many years prior to my own health issues I worked in community services, teaching people with disabilities independent living skills. So, I have ‘some’ knowledge of the services available and how to access them.
One of the programs I was heavily involved with worked with clients with a history of domestic violence (DV). Some people see DV as purely physical violence but there can be many behaviours that arise before physical violence is involved which are still considered as DV. One of which is called ‘coercive control’ or using behaviours to manipulate another. Sometimes it can be little things like belittling or discrediting how the other person feels or bigger life aspects such as controlling your choice of friends and who you associate with. Coercive control has now been identified as a key indicator of DV and because of this there are now programs focused on assisting those in the middle, people like yourself.
Now, because you have had a brain injury and you have a hearing impairment and you are living in a DV situation, this all opens up access to other funding and services available to you. These services are government funded, some via victims of crime services, some via disability services. Some programs are run by local councils or local community centres, some by state and Federal government agencies. You just need to know ‘where to start’ and that was a big part of my role when I was working. Finding the services, how to access those services, then linking my client’s to appropriate services that best met their needs.
I am NOT saying I have all of the answers, not at all, but if I can assist I am more than willing to research what services maybe available in your location and how best for you to access them. I would need some more information on your location. I can see you’re in QLD, but there would be very little use in me researching services in the Gold Coast for example, especially if you lived in Mackay.
Just know, you are not alone in all of this, far from it. There are services out there whose specific role is to assist people in your position. You just need to know how to access them. I can help to get you that information. All you have to do is ask.
I had AVM brain rupture surgery in 2003 and was in a coma for 6 weeks in the hospital. When I woke up I had to be retrained in everything and I was released from the hospital in 2 1/2 months. I was told it was a miracle I serviced. My spouse had a drinking problem for many years and made it very hard for me. After about 2 months he threw 5 metal pipes at me and that was the beginning of the end. I finally got a a divorce from him and proceeded with my recovery by myself. It has been 22 years since this all happened; and my only problems are I can’t read very fast and my ears ring. I am going tomorrow for hearing aids and hopefully I won’t have the hearing problems I have had. I have found a wonderful church and have gone there for about 15 years. I even have real good friends at church. I go to a free exercise class and it is keeping my walking good. I wish you much love and recovery!!!
Hi Merl, I have tried to find support but its been hard. If you do know of any support groups that would be lovely. I’ve struggled to find support that fits what’s happened - most groups only seem to address one aspect. So I’ve found support for my hearing loss, but I’ve never met anyone in person who’s had an AVM - apparently the hospital used to run a support group years ago but it got too expensive. I’m in Brisbane. Thank you
I’m so sorry that happened to you. But its very reassuring to hear you have found a community and good friends now. I still limp when I am very tired - my legs seem to forget they are a pair! Exercise seems to help.
Hey @Hotspot ,
An AVM is considered to be a rare condition, often trying to find specific services for a specific rare condition can be near on impossible. I don’t have an AVM, but rather another little nasty growing in my head. There are no specific services for me either. A side effect for me is hydrocephalus (aka ‘Water on the brain’). Many people with hydro are diagnosed at birth, and there are many services for parents/caregivers, but little for adult patients. There’s another type of hydro known as ‘Normal pressure hydro’ where the brain shrinks due to old age and dementia. Thankfully, I’m not there yet. So those services aren’t appropriate either. I found I had to look for individual services to meet individual needs, rather than a holistic service as I couldn’t find anything that covers it all. I think another BIG issue is that we’re talking about the brain and how we, as individuals, are affected can be very individual to us. As I’ve often said to others “I’m yet to hear of 2 differing people having exactly the same brain condition having exactly the same journey…”. We all have differing assistance needs.
Government funding comes in ‘blocks’ and sometimes it can depend on what services you feel you may need as to which ‘block’ you can access. Your AVM is in your brain and technically, you have a brain injury. Many services are available via the NDIS (National Disability Insurance Scheme) for brain injury clients. This unlocks a whole range of service agencies from domestic (household) support for things such as household tasks through to shopping, outings and transportation etc, etc. Some agencies will need a doctor’s referral and then they’ll have their own assessment to work out your individual needs.
Often the hospital that treated you will have a social work department. It’s their role to know what sorts of services are available locally and how to access them. I would strongly suggest making contact with them. They would have their own networks of service providers, tapping into that sort of network can give you additional access.
If you would like to be a little more specific with your needs, I can investigate further.
You are not alone in having to go through the experience of the AVM surgery with side effects that you have to overcome, Only to be treated as if you did it on purpose to inconvenience their life. I am so sorry that you have to go through that, I had a husband who was embarrassed because I had to use a quad cane,and a AFO brace, he would make comments about.i felt a seizure coming on and told him that I didn’t feel good, but he had a fishing trip planned for the weekend so he told me to call my mom and the ambulance and he left.I was so hurt,but years have gone by and I realized that their are people who have no empathy and are very selfish I am remarried to a man who would never make remarks that would hurt me or leave me in a time in need.
You don’t deserve to be treated like that at all,it is not your fault that he is selfish it is the kind of person that he is.stay strong there is light at the dark tunnel. I wish for you good luck and happiness stay strong for you and your family