I’m Tim I have the AVM. Here is my problem. My Doc. Recomended Gamma. My other option is surgery. He will do eather or. My AVM is not active and that is why he said Gamma. I am more scared of the Gamma than surgery. Why I realy don’t know. The Cleveland Clinic will pick up my tab for the next 6months. I have no medical coverage. I had my angiogram this past Mon., I meat with him again this Wen. To ask him all the questions I can to help me decide. I’m lost I came up with like 8 questions and I’m lost. What questions should I ask??? I realy can use some help here. I realy just want it out of my head. He said with surgery I could get numb on the LF side of my face and arm. Please help me with questions to ask!! Thank you and good luck with all.
You need to first always bring someone with you…two sets of ears are better. As him what the risks are for surgery and gamma and what is the better prognosis for each one. He will know better after seeing your CT angiogram which is better suited for you… I always ask the question “if I were your mom,sister, female relative, what would you advise”. Also ask him how many times he has done the procedures. What would happen if I did nothing, should I “your the dr”… As for me I had three embos; my dr. is NY says I am pallaitve at this point; went to antoher dr. in Philly and says I might be able to get radiation; you truly need to go with your gut…these drs. are not meant to be your friends. YOu need to feel comfortable. ASk him if you could speak to any of his patients (of course with HIPPA he might say no but its an idea). Ask whast the receovery if like how long… YOu have alot but again, just try to be as calm, bring another along as well as a notebook…leave nothing to memory, you will forget. Where is your AVM? Please update me…if I think of anything else I will add. You will be in my prayers. Being scared is ok…we all are here but we are here for all including you. Peace Mare
Just thought of one more…hae you gotten any other opinions? I have seen four neuros and gotten four comletely different opinions…that’s the only draw back but knowledge is power my friend. God bless. Mare
Ask how long each procedure would take. I agree with Mare take someone with you and bring a notebook. How long would you stay in the hospital. I know I will think of more and will suggest them later. My AVM was in my brain and was told surgery was the best thing for me. I had an awesome doctor who told me everything I would and should expect and my sister is a nurse so she not only asked a lot of questions she explained everything to me in plain English. I wish you all the luck in the World and hope that you get all the answers you need to make your decision.
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)?
Helpful websltes
The Perspectives Network, Inc.
Disability Resources On The Internet
Brain Injury Resource Center
About the author.
The author survived a ruptured AVM, and found most frustrating the lack of information on “what’s normal” and “what to expect”. This was written in the hopes that others wouldn’t have to experience the same frustration.
Sincerely,
Kimberly Rueffer, RN
Hi tim I have just over a year ago had the radio done on mine as it is to dangerous to operate on, read my page it pretty much tells you how things were I think after you meet with the doctor you will know what to do, you just be guided by them
Our neuro gave us some figures to work with because he said that one part of my son’s AVM was “deep-seated” and was a worry to him- He said he expected a 10% chance of right-sided deficits after the surgery- meaning some right sided affects, paralysis, weakness, eyesight loss, etc. AND that he expected a 50% recovery from those deficits.
I took this to mean that he would almost definitely have some permanent side effects on his right side if he had a craniotomy.
With radiosurgery, there was the possibility that he would not have any permanent side effects on his right side.
AND my son had not had a bleed yet which is another huge factor in your decision to go with Gamma knife.
Also I think the size of your AVM is a factor- if it is larger than 3cm, then radiosurgery might not work totally the first time.
Everyone is right here. Take someone with you, write down the answers that are given, take your time, go back AGAIN for another consult if you are still not sure, get another opinion (this is what we did)
Good luck Tim. Thinking of you. Such a crazy insane difficult decision to have to make.
Thank you everyone. I have lots of questions now. I go talk to him in14hrs. I also plan on haveing my answer by Friday. I only have 60 days left that the hospital is paying my tab for this. I know I’m lucky there. Not so lucky with the cost of life flight 13350.00. Everyone knows what kind of trip you could take with that, and mine was only 12mins.lol good luck to all again and thank you