Scar tissue problems

I was wondering if anyone has had any problems with scar tissue after avm surgery in the brain. I had my surgery 14 years ago and had some slight weakness on my right side but about 18 months ago I started to get increased weakness in my right hand and arm. It has recently affected my right leg. My symptoms are similar to that of someone with MS or Parkinsons. My neurologist beleives it is the scar tissue that has built up over time but is sending me to a stroke specialist to rule out that I didn’t have a stroke. Any comments would be greatly appreciated.

Hi Lisa. Did they do a follow-up angiogram after surgery to make certain the AVM was gone?

It is definately gone. I’ve numerous MRIs since. When I started having problems I was checked to see if it had returned and it came back clear.

I will send you a friend request and then message you. I know someone here who had some scar tissue issues. Due to privacy issues I do not want to post it here.

Hi Lisa. I have problems from scar tissue after having stereo-tactic radiotherapy around about 15 years ago. It did not totally rid me of the AVM and they have just found a feeder vessel is bleeding into it, but before this, I had weakness down one side as well…caused by the scar tissue they think. They also think this could be causing my epilepsy, but are not too sure. I will be going in for a video EEG to find out.

Just so you don’t feel like no one is listening… No, I have not had any such problems. I have not heard of anyone else having them, either. I wish you and Lisa the best and hope you both get a clean bill of health!

FB

Hi Lisa, Sorry to be responding so late, but just saw this. Yes, I am having problems with post AVM scar tissue as well. I had Gamma Knife 18 yrs ago, & it obliterated 4 yrs later. No problems until I had a GM seizure 4 yrs ago, which was blamed on the scar tissue. I’m not having symptoms like yours, but the scar tissue is certainly playing an active role in my life. I don’t know the exact measurements of my scar tissue, but the AVM was 3.2 x 2.5 cm in my left frontal lobe. I’m scheduled for an ambulatory EEG & some Neurophysiology testing later this month. Hoping to find some answers there. Good luck to you!
Kristin

I’m sorry to hear yoou are having problems as well. Let me know the results of your testing. I’ve been told there isn’t anything that can be done about my scar tissue because it’s so deep. I haven’t had any seizures but I’ve been on seizure medicine since my surgery because the dr’s said the scar tissue could cause a seizure.
Hope things go well.

>Had my avm almost 25 years ago. Having weakness in right leg causing me to limp and off balance etc. Had angiogram this week, no new avm thankfully. Can this be caused by scar tissue. Have had 5 mris checking everywhere and emg checking nerves...nothing shows up

Lisa had started this discussion on possible paralysis caused by scar tissue from the removal of her AVM.
After the paralysis had taken over her whole right side the paralysis started moving over to her left side while at the same time she stated having trouble projecting her voice. I got tired of the BS being fed to her by her neurologist who told her it was caused by the scar tissue I and took her to the Mayo Clinic where they diagnosed her with ALS in September of 2014. Lisa continued to fight for healing and life, however, the disease took everything from her. Eventually her beautiful smile turned into a struggle to breath and eat. I lost her October 30th of this year. Though she had a full recovery from her AVM surgery, she had one more battle to fight which was totally unrelated to the AVM. She left her family and friends with a legacy of faith in Jesus and love of life.
Much of her story can be seen on her facebook group page which I created for her at: https://www.facebook.com/Lisa-Collacotts-Legacy-of-Faith-1418446258435150/
John Collacott

I was told that the development of scar tissue in adjacent portions of the brain to the targeted AVM was possible and that it could cause problems with motor function depending on the location of the AVM. I had been experiencing increased weakness in my left foot and ankle prior to gamma knife surgery though, so I really have no way of knowing if my ankle and foot issues are due to gamma knife or just damage being done by the AVM itself.

I had no movement at all after my craniotomy 20 years ago, but my brain managed to rewire itself and I had full movement back in 4 months and almost full strength back in about 6 months. My left foot was always a little weaker, but plenty strong enough for me to continue in my career as a dancer.

Recently I've had increasing trouble with it, though, which led to a diagnosis of a re-grown AVM (yes, they can grow back, I am living proof of that) and had gamma surgery after the vascular neurosurgeon said the new, re-grown AVM was too big for a craniotomy.

Good luck getting to the bottom of your issues.

Hi Maria, I had an AVM removed almost over 13 years ago and seem to be now going through a similar situation as you. What was the outcome for you? Thanks!

Hiya. I still have problems with it. My AVM has now regrown, although not as big as before. I have to see the neuro every 6 months to keep an eye on the size of it. My seizures have worsened over the last couple of years due to the pressure, but other than that I’m doing okay. Has yours started growing again? It’s funny cos I was told that can’t happen once they have been shrunk, but they definitely can.
Maria :slight_smile:

-------- Original message --------
From: Corey <■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■>
Date: 18/08/2016 12:13 PM (GMT+10:00)
To: ■■■■■■■■■■■■■■■■■■
Subject: [AVM Survivors Network] [General AVM Discussion] Scar tissue problems

Hi Maria, I had an AVM removed almost over 13 years ago and seem to be now going through a similar situation as you. What was the outcome for you? Thanks!

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Thanks for replying, Maria.

I had gamma knife surgery in 2003 and within two years had a follow up
angio. They confirmed it was no longer a problem. However, in the last 4
years I started to notice some weakness on my right side (the AVM was on my
left motor strip), especially in my foot and ankle. Within the last two
years, my seizures picked up, particularly when running. I also have
developed chronic headaches with no explanation. Increased medication
helps, but not completely. After seeing a neurologist and neurosurgeon in
the past few weeks, they’ve told me there is a lot of swelling from the
scarring or, worst case, leftover or regrown AVM. Oddly, I had an angiogram
1.5 years ago and was cleared again, but they are insisting I have another
due to an uptick in seizure activity. The recommendation is that if the
angiogram proves that the AVM is still alive and well, then I should have
surgery to remove it. It’s the last thing I want to do and is terrifying.
Have you taken any steroids or other medications? Have you considered
surgery?

Thanks!

Corey

I had gamma knife in 2006 and craniotomy about 3 ½ years ago. After open brain surgery I was weaned off all meds and remained seizure free for just over 3 years. However this July (2016 ) I had four Grand mal seizures in one day. After doing a bunch of tests my neurologist says it’s due to scar tissue that has built up as a result of the procedures I had done. The good news is they got rid of the AVM – all of it and it’s stayed gone. All the surrounding blood vessels, entire vasculature looks good and there are no other issues. So even though I’ve had to go back on anticonvulsants at least I’m free of the AVM, no longer in danger of a rupture and my risk of having any type of bleed is now almost the same as that of anyone else my age of comparable health/making similar lifestyle choices, who’s never had an AVM. However even though my neurologist is very good I’m still going to make an appointment, follow up with my neurosurgeon just to be on the safe side. He’s in the city and in the past has caught things that multiple local neurologists and even one very highly respected neurosurgeon in the area have missed.