Decisons

I have to choose soon between surgery or basically not. The other option is just wait around for Mr. Haemorrage. I’ve had one bleed already which has left me with epilepsy. With the consultants choice I could go 10 years and nothing could happen but then again it could happen in one month. Am I best to have surgery in controlled circumstances where the people around me have all the ammo and my family are at least prepared for the possibility that I may pop it or be somewhere in the middle.

You must excuse my frank and perhaps practical terms but I think of only my wife and child not myself. The only time I have ever thought of me is before the ops. It’s the only time it ever dawns on one. Arranging it all, preparing people it’s who I am, what I do. If they’re ok so am I, until then.

I reckon I’ll go for surgery after an fMRI I’m having but more time makes one think, too much thinking is far too bad…..

Nice to find this site.

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Welcome Austen,

It’s certainly a tough decision whether to go for surgery or not. Fortunately, or unfortunately, the only person who can decide on the option is YOU (being frank here also, not harsh).

From my non-medical knothole, I believe that if you have had one or more bleeds, the likelihood of another bleed is HIGHER than if you have never bled.

If you do bleed and need immediate surgery, you are “blessed” with wherever you are and whoever is on duty for surgery. They may have operated on multiple AVMs or they may have only read about them. At the point you are bleeding, the options are very limited–they will likely do surgery. For me, that sounds high risk. I’d rather pick my hospital and surgeon, and attack the AVM on my terms and time frame.

To make that decision though, you probably need the consent/guidance of your family AND have a very high confidence in what the treatment team suggests is your potential outcome. Never mind all that legal stuff of “anything can sometimes happen in the Operating Room and you can have severe impairments and/or die”–what does your surgeon THINK is the most likely outcome of your surgery. A good question we have found to ask them is “If this thing was in your spouse’s or child’s head, what would you do?” Everyone we’ve asked that of has gotten very somber and given us what I believe is an honest answer.

Of course, you have to have extreme confidence in the DR and what he/she is telling you. That’s no guarantee by any means, but it’s a great position to be in. Our son had surgery for epilepsy by a team in St Paul, MN. We had not met the surgeon before the surgery, but had extreme confidence in the head of the team. When the neurosurgeon came in, she introduced herself and said “Well, Allen, are you ready to get this thing fixed?” --she said it with 100% confidence that she could help him. We are forever indebted to this team for a successful surgery!

I hope this rambling helps you.

Ron

Hi Austen,

I am so glad you found this site, there are so many supportive people and information to be had. I would encourage your wife to join, as it has really helped me. We found out about my husbands AVM when it bled. He had a huge subarachnoid bleed from a very large AVM deep in his temporal lobe. The doctors are still amazed that he survived and is as intact as he is. We were very fortunate that the team was so skilled as we did not really have much of a choice. I often think of what we would have done if we had known the AVM was there and we had to make a choice for surgery or not. I can not imagine having to make that decision in reality. He had multiple embolizations after the bleed to try to hold out until the swelling in his brain went down to actually perform the surgery itself. That optimal time never really came so the doctor gave me the choice of waiting for a rebleed or just going for it. We got very lucky. In some ways the decision was a little easier for me because I was just sort of numb at that point. What I can share is that I have learned that we really have no control over what will be. That in itself lifted a huge burden off my shoulders. I have changed so much as a person through all that we have been through. Acceptance is likely the biggest of all. It sounds like you have already made a decision and after being on the other side of this, I think the right one. However, as selfless as it is to be making a decision for your wife and child puts a great burden on them. You have to make this decision for you. If something were to happen they might feel that in some way they are responsible because your choice was based on them. I think being frank is so much better than some of the platitudes from people I received. When people say “everything will be okay” when in reality it may not, takes away from what you are feeling. I am a nurse and I think my friends that are nurses and doctors helped most because they were honest when things were really bad. One of my surgeon friends was brutally honest and said what we all knew was true. That validated what I was feeling rather than just blowing it off. You are an incredibly brave person, and I am always amazed at the strength of all of the people living with their AVMs. You are in my thoughts and prayers, and I wish you and your family all the best. I hope that I have not overstepped by being so honest.

Hi Austen,…
What a tough decision to make - i wanted to share this useful document with you if you havent seen it already - hopefully once these are answered you can out weigh any risks and have more information to form a decision…remember you are equally important as everyone else - your family your friends and in this world - what ever your decision feel comfortable its the best decision for YOU :slight_smile: surgery is not always the option, but sometimes it is… please please consider ALL your options xxxx

Planning Brain Surgery
By Kimberly Rueffer

Most people, who go through brain surgery for an AVM or brain aneurysm, do so on an emergency basis. Some are fortunate to discover their AVM or brain aneurysm prior to it becoming a surgical emergency. For those fortunate individual the following is offered as a guide to surgery planning.

Questions to ask the neurosurgeon

Number of arteriovenous malformation and brain aneurysm surgeries they have performed?

Success rate?

Predicted length of actual surgery?

Details of surgical procedure (ie., embolization,craniotomy, metal clips)?

Recovery time expectations?

Anticipated length of hospital stay?

If craniotomy; staples or absorbable stitches?

Type of incision ( straight, zig-zag)?

Location of incision?

Recommended units of blood for transfusion?

Will they shave the head?

Recommendations for screening of family members for AVM or brain aneurysm?

Date of surgical procedure?

Potential complications?
You can expect the neurosurgeon to review the risks and benefits of the surgery. From the patients point of view the idea of brain surgery can be frightening. Our personalities, intelligence, instincts, capabilities, memories, “who we are” is the area about to be assaulted. How will it affect me? Based on expertise and experience doctors can only predict what you can realistically expect. Each patient and their situation is individual.

What to expect after surgery

Headaches - these are a direct result of trauma to the brain. If an AVM or brain aneurysm ruptures and bleeds into the brain, the blood is very irritating to brain tissue. Often this irritation presents as headaches. Many people continue to complain of headaches many years after surgery.

Itching - most patients complain of itching along the incision, especially prior to the metal staples or sutures being removed. some patients may hear a “clicking” sound at the bone flap site. This will disappear as the edges of the bone heal. It takes 6 months to 1 year for complete healing to occur.

Medications -
Anticonvulsants “to prevent or control seizures”. Any trauma to the brain sets the stage for seizure activity.

Steroids, any surgery causes swelling. This swelling is of concern after brain surgery as the brain is housed in bone (unlike your abdomen). Hence there is nowhere for the swelling to “go”. Steroids are potent medications which rapidly reduce swelling. It is of the utmost importance to take them exactly as prescribed…

Fatique - this is the most common complaint. After the initial 6 week healing process after surgery people continue to complain that even the slightest activity wears them out.

Short term memory loss - memory problems are another universal complaint after brain surgery.

Depression and anger - AVMs or brain aneurysms can have devastating consequences. They also tend to strike in the prime of life. Life is going along according to plan and suddenly the rug is pulled out from under your feet. Most people will alternate between feelings of anger and depression throughout their recovery. It’s perfectly normal.

Transfer to a rehabilitation center - most people have some deficits after brain surgery. It is common after recovery in the hospital to be transferred to a rehabilitation center. There, various professionals; physical therapists, occupational and speech therapists, will work with you to overcome or adapt to these deficits.

Fear - many people have said “I know they operated and removed the avm/ba, but I’m afraid it will happen again.” Any twinge or headache can activate this fear. Once again, it’s normal to feel this way. The good news is that gradually, with time, the fear lessens.

Numbness at the incision site - perfectly normal. Nerve endings in the scalp have been cut which causes the numb feeling

Dizziness - another common complaint after brain surgery

Recovery - doctors will tell you, “What you are able to regain in a year is what you are left with.” Don’t believe them! The bulk and most dramatic healing will take place in the first year after surgery, but people continue to improve for many years thereafter. One man who was in a coma for 6 months, and had 3 separate brain surgeries was told “you will never do x, y, or z independently”. Four years later not only does he do “x, y, and z” independently, but 13 years later was still noticing improvements. The message in this is never give up hope!

When do I call the doctor?

Fever

Drainage from the incision

Seizures

Sudden severe

headache

Stiff neck
Questions to ask the surgeon on follow up visits:

When may I…

  • climb stairs?
  • lift (ask how many pounds)?
  • drive?
  • shower?
  • resume sexual activity?
  • return to work?
  • resume basic activities (eg. mow grass, dig gardens, housework, grocery shop)?

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Thanks Ron. Well I know or think I’ve made my mind up. My wife I have asked her what she would prefer me to do but she says it’s my decision but I said it affects her as a wife and a Mum so what does she think from that perspective but also from the other…outside the box…weighing up all the options. Essentially, most people would be in the same mind. Controlled area, consultant with history and familiarity it’s a safer bet.
You can never be harsh Ron btw. Frank I have found is far better. I have found that I comparmentalise all this really. Just one of those things. Not trying to let it take over my life. Let the docs do the worrying.
Appreciate your thoughts.

Truly made me think and feel. The problem is Laurie my wife and daughter are my first and last thought each day. I am realistic with her as to what will/could happen. She’s coming to the next appoint too to see the consultant. Thinking about me though, may upset me (not that I haven’t been upset before) and at the mo I’m really trying to be strong for my family. I’m taking a few days away though to do this and come to terms with it, be a bit more steeled with it.