Surgery or not?

Prayers to you. Good questions I’ll be looking for those answers.

What a Blessing you are to your wife! Looks like you have researched quite a bit? (Good man.) What a scary journey you are both having, but thank God for the support system that you have with EACH OTHER! CHEERS TO YOU and HER!

Thanks a lot @BoxBarge. We are lucky to have lot of good heart people including people in this group like you, @Kell and everyone to pray for us. God is with us to keep this journey as comfortable as possible.

Hello all. I am the wife of a 62yo computer software engineer who suffered an AVM hemorrhage on January 13, 2017. We spent 5 days in ICU and then 7 days in rehab before being released. The past 5 weeks have been spent researching as well as multiple (ugh!) doctors visits (neurologist, ophthalmologist, primary, neurosurgeon, rehab doctor, second opinions) and speech therapy. His stroke symptoms (Thank God) weren’t too bad from my perspective (if you are asking my husband though, he will tell you he does not like not knowing names of things or losing his thoughts) He experiences aphasia and aphaxia but no physical problems. He has lost like 25# and lots of muscle mass due to not being active. (Told to not overexert until this AVM is treated) His speech improves daily.

The decision was tough. His AVM is located in his left temporal lobe. We were originally treated in a suburban hospital and we thank God they had a neuro floor with an neuro ICU, but we wanted to go to a medical center that had more experience with AVM’s. We chose Rush University Medical Center in Chicago with Dr. Michael Chen.

Hubby will have embolization with onyx under general anesthesia for his AVM on March 6. If that isn’t successful, as a back up he is scheduled for a craniotomy.

We are ready to put this all behind us. His ear thumping is excruciating at times and he takes naps frequently for the “flooding” he experiences when there is just too much stimulation around (doctors office waiting rooms are rough!). We are very happy to have a day here and there where there is NOTHING on the schedule.

Thank you all for your input to posts and your personal stories. It has helped tremendously in my job as caretaker and advocate. @kelango27

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Hello @Starcyn, I am sorry to hear that but glad to know he is getting better and you have treatment plan to take care.

I am pleasantly surprised that the doctor only recommended embolization to treat this. I am not trying to alram you or anyone. However, i was told that embolization alone as a treatment is quite not accepted. I do see that you have a backup plan of craniotomy. I truly hope and pray that he should be treated just with embolization. Please keep us posted on the treatment.

God bless your family and my prayers are there for your family. Everything will be fine very soon.

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@kelango27 Thinking of you as you go thorough your wife’s surgical experience. My husband had his embolization last Monday and Vascular surgeon seems to think that it will be enough. Repeat angiogram in 3 months to verify. We had 7 weeks in between his massive bleed and the embolization, which gave the hemorrhage time to reabsorb - giving the doctor a much better view of everything (He was not in favor of this, but it was one of our second opinions the reason that we waited so long). Dr. said it was on the surface and he had an easy time to get to it and the veins looked plugged after procedure. Good news is that husband isn’t having those headaches anymore! Wow that was fast right? Still has some rushing and pressure in his ears, but that is sporadic and hoping that heals in time. Bad news is that he came home with a Foley. :frowning: Keeping you and your wife in my prayers.

Hi @Kell I have to agree here with Beansy as usual :slight_smile: , I have been unfortunate to have gone through both a bleed that came with its own Craniotomy and then another craniotomy to remove my AVM 7 months later. I had both and recovered with no serious issues, For the bleed I’ve had headaches since that everyday and it does take a toll on me, I was in hospital for 2 weeks then off work for 8 months. For the removal surgery I was in hospital for 1 week and back to work 8 weeks later. The difference is huge, A bleed causes much more damage in the brain than a controlled surgery by a professional, you are fortunate if you have a choice !, I didn’t have this choice I was told that surgery was my only option and I was very afraid, But just kept telling myself that I would be fine and I was !. Thanks and hope this helps.

Martin

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Thank you for sharing.

Finally, the surgery was over today. She is back in ICU now. She is doing okay. I say that because she was able to lift her hands and also the speech was not bad. However, she seems say some random things and also she counderstands not say some things like what year this is. She can say her name and she remembers me, my kids dog name and friends name. Is this normal?

Thanks a lot for this group. I will write more when I have more time. Please answer my question since I was bit worried is there is any impact to memory. It was not mentioned as side affects by any doctors for her case. Only speech and right side weakness are the side affects mentioned. I hope it gets better since it has been only 5 hours since she came out of surgery.

Update from today. Her right side is weakened more that what it was before surgery. The are going to take an MRI to see how the swelling is and I am hoping that it is because of the swelling and not the surgery itself. Her speech is impacted too but that is expected.

She can feel much of her right side. She tried to walk with support and she was able to walk if someone holds her. Hopefully it will get better in next week days once the swelling goes down.

Any suggestions, thoughts? The physiotherapist said that some people will come back in 2 days and start to walk on their own. But some may have to go to inpatient PT,OTE and ST.

Hi,

Is your wife post embolisation or post both embo and craniotomy? I’m sure both can be very variable in the effects that interventions have, though craniotomy is a grand assault, so no surprises to have some swelling and temporary effects.

From what I’ve read, hours and days post craniotomy are very early in the recovery process. It sounds to me as though she’s doing very well.

Very best wishes,

Richard

@DickD - This was post Craniotomy. They did embolization on March 13th and Surgery (craniotomy) on March 14th. She is having numbness on the right leg only. She can move, bend and the doctors are saying that she got power in that leg. It is only numb. Before the surgery, she had some perk ling feeling (kind of pins and needles poking) on the right leg down below the knee. I think it has got worse after the surgery. I am hoping that after the swelling goes down, the numbness will get better and it is not a permanent issue.

Also, they took MRI today to confirm that the weakness on the right side is not because of any stroke during or after surgery and they do not find any symptoms of stroke. it is only swelling they see which is normal for brain surgery. Therefore, the hope is that once the swelling goes down, her numbness gets better and she can start to feel her leg.

Anyone with this type of symptoms, please update and provide your thoughts and story.

Thanks,

I would give it a week for the healing to kick in the body will still be dealing with the trauma of the procedure, And trying to adjust, I found that after a week I started getting a little stronger but everything takes a huge effort, Its easy to lie there and not try hoping that everything will be ok, But recovery takes work and never giving up :slight_smile: , Please pass on our best wishes to her.

Martin

It’s never an easy decision but if they think it will be successful and can get it then it’s definitely something to highly consider doing as you see so many of us have been there and here today to help others going through this tough time… God bless!

Thanks @MartinB. It is now the 5th day after surgery. The steroid dosage is going down and she starts to feel heavy pain now. On top of headache, she got the lower back pain. They are saying that it could be because of the physiotherapy that she did (walking). I am thinking it might be resting in the bed too much on your back. I am not much worried about the pain as I still think it is too early to not to expect pain.
However, I am more worried about the pin & needle feeling on her right hand and leg. she use to not feel the sensation at all and not it is pins and needles. The Neuro team is saying that it is a good sign that she is getting her sense back (instead of numb) since the swelling is gradually reducing now. However, I did not see any improvement in the pins and needles feeling for the last 36 hours. It remains the same.
Does anyone felt this way. Numbness followed by pins and needles. Because of that she is still not feeling her foot completely. Therefore, when she walks, sometimes, she does not put the foot from heal to toe. She puts it flat and fast or sometimes she puts on the pinky side down first. When she climbs stairs, she hits the next step with her toe first. She did not have the control is what they are saying but the strength is there.

Hi This does sound promising and the doctors are best placed to confirm that :slight_smile: , Pins and needles are a good sign that feeling is coming back into that area, Swelling will continue to go down and seems like everything is going well, With regards to the pain, This should always be at a manageable level and the doctors can help with this also. Sleep as much as possible which will help and avoid bright light (At least this is what I found to be good for it) Hope things continue to go well. Thanks

Martin

Hi Kelango;

The risks you mention were told to me to be cumulative over time. I was told 10%/yearfor mine so after 10 years = 100%. Surgery was the only answer for me.

With regards to your MRI, that’s too technical for me but it would seem that your AVM is located further back from where mine was.

For some of them the option of surgery is not on the table and so gamma knife is.

Please discuss with your neurosurgeon and neuroradiologist for further queries.

Sorry I couldn’t help

Thank you for your response. I have had several appointments since this post and have scheduled two embolizations and a craniotomy. Gamma is not an option for me.

Hi Facenda,

I’m delighted to know that you are doing great .My brother recently had his AVM surgery in April 2017.His avm was on the left frontal lobe. He showed wonderful progress,so much so that doctor suggested to lower the dose from 1000mg to 125 mg last week.However, this quantity was not sufficient and he had his first sezuire after surgery two days ago:( His brain CT scan was normal .He stayed one day in the hospital under observation .Now doctor has increased his dose back to 1000 mg for the next 3years .I hope and pray that he does not have sezuire in the future and that this dose help him in preventing it in the future .Doctor has advised to take a week rest at home .
It is a great support to share and talk to people who can actually help and guide .I wish you a healthy life .Stay strong .
Irha

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