Hi everyone, newbie here and so glad to have discovered this support group.
My husband was diagnosed many years ago (probably about 20) with an unruptured AVM, parietial and temporal lobe. 3 embolisations and 2 gamma knife surgeries later (2007 and 2011 or 12) he was given the great news in 2016 there was no longer any evidence of malformation. Obviously we were delighted.
He has remained on seizure meds (he has been on these for about 20 years…carbamazapine 400mg). He took a big seizure about 2 years after 1st gamma back in 2009. He took a second seizure 6 months ago. Lately he has been getting come and go tingling on right side of whole body and i can see he is struggling with his words/speech at times, mainly when he is really tired…a couple of weeks ago his general doctor (not a neurologist upped his dosage by 200mg after he said how he was feeling) His neurosurgeon advised that as he has scar tissue from gamma, this activity is to be expected but as he hasnt been seen in 5 years, a check up mri wouldnt do any harm so will have this but will be a few months before being seen. Thing is, it is so hard getting him to say how he is really feeling. He gets frustrated at me because i keep asking…he says he is fine when i can see he isnt. I have so many questions. Is this really to be expected? Is this relatively “normal” for someone who has had this surgery? Can he become tolerant to the drugs he has been on for so many years? He was devastated at last seizure because of loss of license which is getting him down. Would a new or additional medication help? Has the upping of his current meds caused more harm than good? I feel so lost, he can speak to his doctor or consultant but wont really say too much whereas i have no one to speak to and yet have so much i want to say/ask. I’m finding it really hard, i love him and just want the best for him and for him to get the best of whatever it is to help control this but i dont know what to do.
Hi everyone, newbie here and so glad to have discovered this support group.
Well, there is no “normal” when it comes to any of this. Very unfortunate that you can’t get in sooner to see a neurologist/neurosurgeon < this seems to be what holds me together when I need it.
I know you want to help, but “we” feel very alone in this even when someone does try to help & means us well.
Seizure meds alone, carry pretty nasty side effects - I’ve been lucky & am able to be off of them. They took me off as soon as they got me stabilized.
Just try to do your best - it’s what all of us can do. Sounds like he’s definitely having a hard time dealing with this - from personal experience, I can definitely understand why. It’s very overwhelming at times - but, I have been very lucky so far - unlike some
Try your best! I know it can get very difficult at times - but, that’s all any of us can do at times.
Welcome! I often say that it’s great you found us and too bad you had a reason too! You have a lot of questions that certainly should be answered, but the best source is certainly a neurologist/neurosurgeon. We can pass along experiences for sure, but we are all really different. I had gamma knife in 2016, this was following a bleed 6 months prior. I have been fortunate in not having any seizures or requiring anti-seizure medication. I gad an angiogram in 2019 and the AVM was considered obliterated. This was preceded by yearly MRIs. I then had another MRI in 2021 and next is scheduled for 3 years.
They can see what the y refer to an “artifact” on the MRI which I think is the void created by the bleed. They continue to monitor that as there is a chance of a cyst forming. My scans will go on for the rest of my life. In respect to deficits, I had aphasia after my bleed, which has largely disappeared. I still experience it from time to time, particularly when I am really tired. I know when I am experiencing it and can usually shift my words so most don’t know, but I do. Then there are times when I just get stuck. Its very frustrating, and even more so when it gets pointed out to me that I seem to be struggling to find the words.
I know that this is not a lot of similar factors, but hope that a little bit from a few of us may help. At the end of the day support is the huge factor. Take Care, John.
I have to agree with both Mike ‘…there is no “normal” when it comes to any of this…’
JD ‘…We can pass along experiences for sure, but we are all really different…’
And now, I’m going to talk about me.
Us ‘males’ can be a little pigheaded (OK, so I’m a little pigheaded. A LOT if you ask my wife) and sharing feelings was/is very foreign. I used to be ‘The helper’, not the one who needs help and I HATED it. I denied I needed any help. I call it the caveman mentality ie ‘I man, I strong’ only I wasn’t and didn’t want to admit it.
I’m not a great one for saying nor showing how I feel. My wife will ask (and ask, and ask and…) and the easiest, most simple answer is ‘I’m OK’, she has learnt that my tone tells her more than my words. I can say ‘I’m OK’ but it sounds strained, then she looks at me and can read me better than I know myself. And yes, it’s frustrating. I want to say ‘Yea, I’m fantastic’ but it would be a lie and she knows it and that’s frustrating too. I can’t do what I used to do, and that’s frustrating. This all annoys the absolute daylights out of me and sometimes this frustration just explodes out of me at the most inopportune moments. Is this to be expected?? Well, it was for me. I needed help, but I had to get to the point of identifying it for myself. If anybody else mentioned it BOOM I’d explode. My poor wife, she put up with a lot.
Now, as for the drugs, this really is something you need to get professional advice on from a pharmacist and/or your Dr. When it comes to medications and their doses it needs to be carefully managed by the people who know and that’s a Dr or a pharmacist . In saying that some people can build a tolerance to some medications, where a change in dose maybe appropriate. Again, for myself, I take an opiate for pain management and if I keep taking them my body builds a tolerance to them and I find I need more and more to do the same job.
DO NOT be adding any further meds without professional advice. Take a list of ALL of his meds, ALL of his supplements (Vitamins, natural supplements, minerals etc) their dosages and frequency. They can all have an impact both on your husband and each other. Mixing the wrong meds and supplements can have some really detrimental effects. In some cases mixing meds can kill.
We are always here if you need.
Merl from the Modsupport Team
Thanks all. Merl…the ask and ask and ask made me laugh…that is me all over and it frustrates the life out of my hubby. My anxiety takes over.
I do understand everyone is different just at times hard to take.
He has to get all meds via docs anyway so no risk of adding, we are very obedient and just trust the medics.
It has been a long road but i know he is lucky to be where he is, all will be fine.
If I can, I just want to tell you, you and your husband are not alone! I’ve had a number of procedures. Gamma knife twice, craniotomy, shunt install, shunt revision, gall bladder removed, appendix removed, and others. It wasn’t a “one and done” as one of my prior doctors said. So I suppose to give some understanding, we understand what you’re going through. Not all of it because each case is unique. But we can identify as another couple who deals with similar struggles.
One item of note I would make, keep a journal or record of all medical problems you have. My wife, Leslie and I, like Google keep (keep.google.com). There is a phone app you can install, it is tied to your Google account, and you can share notes and pull it up anywhere. It’s great for taking notes, especially if you don’t have a scrap of paper. Then you can share it across platforms. Hope it all gets better for you guys! Blessings as you continue, grace and peace as you go!
Hi! Everything the guys say is right. I’m sure we’re all trying to find new things to say that might help. Here are my thoughts.
I think anyone who has had an amount of brain damage (e.g. the scarring) is liable to have a reduction in function over the sort of timespan you’re talking about. The question is whether it is just age having an effect or whether there is some other acceleration due to an AVM or his operations going on. Like you say, the only thing to do is to get a scan and have a look (and we know that takes time).
In regard to losing his licence, I think the thing will be that once he’s been on the new meds for a year and seizure free again for that period, he should be able to apply for his licence again. I am sure we can all relate to how depressing losing one’s independence like that is but I’m not sure it’s “forever”. It can be quite a faff getting the licence re-granted so that will be a bit of a hurdle but I’d hope at this point that it will happen.
Like Merl says, we chaps don’t let on very well about how we are. I don’t tell my wife stuff unless I think it is important to be honest about something significant. She has her own worries (and tends to worry more than me, so I don’t tell her). However I do set myself a rule that I tell her important stuff. I
If you can find a way to say “You don’t seem ok” and can express the effect that not knowing what’s going on has on you, you might prize the lid off him. He probably doesn’t appreciate the effect it is having on you and is trying to “protect” you but it’s having the opposite effect.
He’s probably worried that he needs further surgery and he’s done quite a bit already, hasn’t he?
Welcome, by the way! It’s great to hear from you.
Very best wishes,
I can only talk from my own experience and I hated the medication I was on. Everytime I told my doctor that I felt “sensations” (I got that tingly feeling in my left side of my body) he just told me to increase the medicin dosage. And I felt worse and worse. It made me loose the feeling of hunger, which made eating less fun. I didn’t feel happiness nor sadness, I was an empty shell. It made me depressed. It went to a point where I didn’t care at all anymore, which makes me so sad to think of…
So with help of an alternative medicine lady, I slowly went off my medicine and started to really take care of my body. I quit the job I hated, I went to yoga retreats and tried to balance my body again. Forgive and move on. I started to work out at the gym, for real with help of a real PT and not those physiotherapists that didn’t look like they’ve ever been to a gym. I gained strength back in my left side and instead of taking the medicine (lamotrigin) I took CBD oil and shilajit and eat only plant based, nutritious food. This is very much “alternative medicine” but it healed me and now, finally, I’m stronger than I’ve ever been before (I’m so happy with my body now!) and It’s better than even before knowing of this AVM (when I was 19).
It takes patience to get to know your body and your mind to heal it.
I hope that your husband will feel better and slowly love his body again and I’m happy you’re there supporting him, it means more than you know, for sure
Can I say that, as a community, we do not condone stopping formal medicines and moving to alternate therapy as a treatment path for AVMs, or seizures, etc. However, I agree that it is important that we do the right thing to look after ourselves well – and that includes a healthy diet and healthy lifestyle. I also agree that we (or the doctors) can sometimes get into a course of adding more and more medication; review of medication from time to time with the doctor is a good idea, especially if we are on several different drugs or where things aren’t going to plan. I am convinced that Merl, one of the @ModSupport team, would agree that adding more meds isn’t always the right thing to do because he’s been there, done that.
I hope this brings the right balance to a difficult subject.
Thank you both. My husband has been pretty much under control seizure wise with no medication change for 20 years, just the odd breakthrough, that is why i am anxious now as a lottle more possible activity going on. He really trusts the NHS and so will always be guided by them. As i said his doctor has just upped his meds by 200mg per day. I can see this is making him tired, slowing his speech a little but hoping that will just be until he gets used to the increase in his body. I cant see him ever going in favour of a totally natural route.
That being said, i have been looking at bettering his diet, reducing sugar intake, encouraging naps if needed, banning any sort of alcohol (he isnt a big drinker btw), ive tried to keep my anxiety in check so as not to cause him stress, as i want to do all i can to remove anything that could be a trigger.