I’m new here. My wife is 2 days post-op. Her AVM was in the sensory-motor cortex and she’s now experiencing loss of sensation in her left arm and leg. Mercifully, she can still move them both but has no feeling in either limb. Has anyone experienced this before or heard of any therapies to help regain feeling? Her arm is worse than her leg but she can’t really feel either. We did embolization and microsurgery for her AVM and we are lucky she is alive. She lost feeling in the arm post embolization and lost feeling in the leg post surgery. Any advice?
Welcome to Ben’s Friends
With your wife being only 2 Days post surgery things will still be settling down. I was 2months post neurosurgery before I felt anything like normal and even then I was still having surgical side effects. Brain surgery is a major assault on the body. I’ve explained it to others before like this.
"Your brain is the body’s computer. Surgery is a bit like opening up your computer case and throwing in a handful of aluminium foil flakes. There can be short circuits all over the system, giving all sorts of sensations…’
Being that the surgery was near the sensory-motor cortex it simply must have an impact on her limbs. I would suggest speaking to her medical team regarding the use of appropriate exercise and/or massage that may assist. In some cases this maybe OK, but it would need consultation with the medicos regard which exercises are appropriate as some may exacerbate problems.
Recovery can be a long slow process, somethings may return to normal over time, but then some things may not. For me my recovery was on a bit of a seesaw, some days I’d have minimal symptoms, some days I’d be bedbound. I just had to be ready to deal with whatever arose in the day.
Hope it helps
Merl from the Modsupport Team
I agree. Surgery of any kind will lead on to inflammation and pressures on things that should go away as everything settles down. Definitely talk to the doc about it – are they worried by these effects? But 2 days post surgery is very, very early.
I didn’t have open surgery but I had an embolization with glue. This means they feed a tiny narrow tube in at my groin all the way up to the AVM in my brain and blocked it off by filling it with glue. (Quite a lot of glue, apparently!) Well, that sounds a whole lot less stressful / impacting on the tissues around the operation site but the reality is that you still have foreign materials (radiographic contrast material, solvent from the glue) going on and it took me 2-3 weeks to feel “ok”. It took me months and months to get back to “normal”.
Hope some of this helps. It’s very difficult being the husband / wife / carer and not knowing about all of this, so read around the site, get used to other stories and what you might expect. And make sure you look after yourself first: eat properly, drink properly and get proper rest: because hopefully she will get better quite promptly but it could well be the case that she’ll need your help over a long time.
Let us know how you both get on.
Very best wishes,
Like mentioned above, give it time - she’s very fresh out of surgery
I don’t mention it often myself, but my right leg is still a bit numb post my embolization.
My right hand side numbness symptoms started prior to my embolization & went down a bit post.
For the first month or so, it was a bit tough - I had a slight numbness in the outside of my right arm, including fingers(it was tough to grip a pencil & write) Along with a numb right leg. . . I was not referred to physical therapy & started going for short walks + doing small hand exercises. . . Within a month I felt better - although my neighbor says I still have a limp to the right ever since all of this happened.
Much appreciated! We were blessed in that we found hers before it ruptured and it was both getting bigger and causing her seizures and daily powerful headaches. It was SM grade 4 so the fact she made it through to begin with and that the worst so far that has happened is lots of pain in her head and loss of feeling on the left limbs is more than a little blessing. In fact, a little later on in the day today she banged her leg on the table and she actually felt the pain. That’s the first thing she’s actually felt on that leg so at the very least something is working. In spite of the pain, she got a huge smile on her face after.
Her left arm actually went numb after the pre-surgery embolization. Not sure if that’s coming back but I’m pretty optimistic about her leg. Either way, she does have mobility and use of her arm and leg which is more than it could have been. Thank you for the kind message. We will be following up with her doctors about the PT and other work we can do to help improve and regain anything lost. We currently live in indonesia but would you happen to know any good doctors/rehab people that you could send me to? I want to get some advice from people back home as here they have some decent surgical intervention people but the aftercare is sometimes lacking a bit.
Near as I can tell the doctors don’t seem worried. The post-op CT looked clear and it seems like they’re not seeing anything outside what i guess you could call normal. Now that I am thinking about it though, the doctor left a clip on one of the arteries/veins inside her head. Has anybody heard of that before?
One of my concerns here is I want to make sure I’m getting the full picture and I’m not sure of all of the questions that I should even be asking.
All sounds normal to me. Clipping some arteries I’ve seen written about several times. Sometimes used to deal with an aneurysm, which are common cohabitants with an AVM.
Ohh yes, I’ve heard that before. I’ll try to explain it in very layman’s terms. Now, I’m not a dr but this was how it was explained to me.
If you think of the AVM like a branch of a tree, with the branches getting smaller and smaller as they get further from the trunk. Think of the tree trunk as the artery and the branch grows from the trunk. The dr’s want to reduce the size of the branches. Just like a tree cutter trimming a tree, he could cut off each individual growing tip, which isn’t going to reduce the tree size much or he could take the whole branch much easier, quicker with a major reduction in size. By using a clip they can take the whole branch rather than individual ‘tips’ and reduce the overall size of the AVM.
In some cases, they use a type of glue, but sometimes glue can move or ‘migrate’ as the blood rushes past it especially in larger vessels(Not what you want), and some dr’s prefer to clip rather than use glue. Clips do not migrate.
As I say this is a highly UNtechnical description that someone maybe able to clarify in better terms but that was the analogy given to me.
Merl from the Modsupport Team
I like it. I often think of arteries and veins as being two trees. One – the arteries – made of wood and strong. The other – the veins – perhaps wholly supported by the strength of the other tree. The two are intertwined, joined at every leaf, being the capillary beds.
Obviously, in my mind, an AVM or a fistula is a direct connection from the branch of one tree to a branch of the other tree, no slow-flow capillary bed to go through, risking the integrity of the flimsier tree, as it is not designed for the arterial flow of blood.
… Random share! Hope you don’t mind.
Much appreciated for the shares. On top of everything else, I’m now finding out she has an ulcer. Her stomach was playing up all morning and i finally know why. In the afternoon she was doing great and now she has a fever. She’s at the end of her rope and I’m fast approaching mine. At least she is getting some sleep and paracetamol finally. I really wish we were back in the US.
Thanks for the shares and the knowledge. It feels good to know that the clip being in post op is not that crazy.
Its really nice not to feel alone.
We know exactly what you mean. We’ve been there
To share some happier news, after a pretty awful night her neurosurgeon (the big boss here) came to see her this morning and put a bit of a boot up the ass on his team to get my wife’s meds sorted and between that and the revelation of the ulcer she hasn’t really been nauseous today at all, has eaten ok, and has even been able to get up and walk around a bit. It’s like my old wife is back and it’s more than a little fantastic. I know it won’t be the last awful day but a morning/afternoon like this gives me hope to know what it can be.
Earlier she even grabbed a drink with her left hand without even thinking and did it nice and controlled with a solid grip. I’ve been trying to tell her and remind her that She’s starting to feel like everything is still there and she just has to find it again. The biggest win was that the PT nurse said her left hand grip is quite strong and my wife nearly cried because she has been afraid she wouldn’t be able to hold our daughter again.
For the first time since her surgery she can see a bit of light at the end of the tunnel and it feels really damn good.
God bless all of you. If anybody reading this is having one of the bad days please know I’m praying for you and that they aren’t all what way. I’ll look on this later and remind myself of that too.
This is fantastic news! It sounds like she is doing very nicely.
The other thing that I would put in is that recovery from these things is measured in progress over months, not days, so you should both expect that some days will go backwards but overall, you should find you make progress over the longer term. Don’t be put off by a bit of regress. It seems pretty normal.
I especially like your plan to write down things like this, to remind yourself of the good days.
Keep on keeping on. Very best wishes,
I agree with Merl!
I’m a year out (finally!) and still numb on my right side in certain places. Once completely cleared for moderate exercise, walking was the first activity. Then I strangely started bike riding which after the fact was probably good for balance. My goal was to run a 10k and I have, but guess what? Still NUMB in my right leg and foot. Some days it seems to work better and I have more feeling and others it really feels like dead weight. It’s a different kind of normal, but getting active and staying active will make your whole body feel better overall. In the hospital, I was nervous about blood clots, so I walked a little bit everyday with the occupational/physical therapists. They were encouraging and helpful! Always consult your doc (exercise was put on hold right after follow up angiogram) but it is good for you mentally and physically in the long run!!
Best wishes and God bless!!!
I suppose I should check the rules here to see if I should perhaps move this to a different spot but I wanted to share another update. We are home from the hospital. She’s walking, some feeling came back in her left side, and we are now going through the first tests of being home. Our first night back was a bit rough as we didn’t get home until late. We woke up our daughter by mistake and she cried a lot when she saw her mom. Today we woke up early and I went to go play with our baby girl. Once she realized it was me she got all excited and heard mommy trying to play with her too. Once she recognized the voice I brought her in to see her mom and it was still nothing but smiles.
She walked a lot around the house and got up and down from a seated position on the floor a bunch of times while playing with our daughter. When we ran through her PT exercises she was also a lot stronger. She was super tired though through the day because the activity level was a lot higher than in the hospital but I think the prospect of playing with baby girl kind of pumped her up a ton. There have been good moments and bad ones but on the whole the trajectory is trending good.
Also, got the confirmatory DSA and 100% obliteration. There are a couple of aimless veins on the lagging side of the DSA we will be keeping an eye on but that should be a non-issue.
All of the best,
Nah. Just carry on!
This is great to hear
This thing called ‘Recovery’ can be a slowly, slowly process. And it is NOT a straight line trajectory. Some days I can leap a tall building in a single bound (OK, so a bit of an exaggeration), but some days I’m lucky to be able to crawl out of bed. For me, if I do too much today I know I’ll be paying for it tomorrow, so learning to pace self can be very important. There is a theory known as the ‘Spoon Theory’ with spoons representing energy. Once we’ve used all of today’s spoons (energy) we start to exhaust tomorrow’s spoons too, but this means we have less energy for tomorrow. There will be good days, but there will also be bad days, you just have to be prepared to manage them both.
Do not, DO NOT be pushing that slowly, slowly recovery. If she pushes too much she can end up going backwards.
It sounds like things are heading in the right direction, long may it last.
Merl from the Modsupport Team
P.S. I agree with DickD ‘Just carry on!’ No rules have been broken, you’re doing OK.
So they obliterated 100% of the grade IV in one shot? That seems dangerous. My doctor did three surgeries to go slow
So your wife is just starting to heal, I am understanding? It has been a while when I knew something about embolization, but I need to learn more about it, again. Anyway, is she in any rehab now? If so, I hope she will fight to get better & better. :-)))
I did 7 brain surgeries in 1990 for my AVM & suffered 2 strokes w/it! I was 1/2 paralyzed, blinded etc… after my medical mayhem, I FOUGHT & FOUGHT & FOUGHT somemore. After a couple of years, I finally saw a light, & life got great, again, in many good, yet different ways! I hope, in time, you & your wife will see an excellent future for yourselves! SEARCH & FOCUS on any small or large POSITIVES that you see in her future!!
We got lucky for her AVM. It was in one large, tight tangle and it was draining at a single point on the surface. She had a 12 hour surgery and ended up getting 3 blood transfusions during. It was a marathon event but they got it out in one shot. She has 2 aneurism clips in too. The pre-op embolization went a long way towards helping i reckon as they used the glue as their guide for where the AVM started and ended while they were doing the surgery.