Hi everyone!
I hope you are all doing okay.
I had a cerebellar AVM rupture and removed 2 and a half years ago. Since then I have experienced nerve pain through my back and down my left leg, which is mostly triggered by sitting for longer than 15mins. I have tried many phsical therapists, and a chriopracter, but nothing seems to help.
Has anyone experienced anything like this? I would love any input or ideas for things I could try?
Thanks,
Ella
I haven’t experienced similar Ella, but have used a TENS machine for various ailments over the years, unrelated to my AVM/Brain. Various sports injuries etc and have found it very effective at times, sometimes works great, other times little impact. Certainly not a cure all but worth a try, I would look at some naturopathic things to try with Dr. Google. There is also your Dr. as there is certainly some pharmaceutical options but if you’re like me, I like to exhaust other options first. Take Care, John.
Hi John, thank you for your suggestion. I will definitely try out at TENS machine.
@ella Hello I am so sorry you had a rupture. I too have nerve pain that goes from left arm then my left leg kinda feels like a bad hamstring pull. I also had head pain 24/7. One thing that my neuro did a few months after my rare stroke CVST was to send me to see a Pain Neuro - I go to Stanford and never could take most pain meds I think I am allergic. We have tried everything with pills and shots. What is working is Botox shots for my head and left arm- - She wanted to try botox in my leg but my Physical Therapist said no because I am really weak on that side and the risk would be to weaken the muscle- turns out they diagnosed me with Centralized Pain Syndrome which I think many of us have . I also get Ketamine infusions but Stanford doesnt have enough nurses to do it as it is supposed to be every month. I do get oral Ketamine too for the really bad days. Ketamine is an old drug. The first time I did the infusions my Stroke doctor found out and made them do it in the hospital since he knows I am so allergic to meds. I got 3 months of pain relief!
What part of your brain was impacted?
Hugs Angela
Hi Angela,
Thank you for your response. I am so glad that you have found something that helps. I might have to find a specialist who can help.
my cerebellum was impacted by my rupture.
Thank you,
Ella
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@ella Yes my pain neuro is the head of the headache clinic and I also see the physio in the pain clinic as well . I will also say it can vary ( Botox Shots) on who does them. A few times when my Pain Neuro has been on vacation I have had a few other drs do it and I know who is good and who isnt.
I believe they call our leg pain also myofascial pain syndrome , and I have even tried accunputure ,massage , tens unit, loads of pt , once I got a huge shot up my nose ( dont do that) Having the massage helped but only for about two days. I even got one the Ashley Black tools that is for myofascial tissue -
Drs tend to be afraid of Ketamine unless they work with it cause its used in animals and can be very strong. I am a lightweight thank goodness cause Stanford only will give you 43 mg in your infusion and others I talk to get a lot more. I am 20 mg orally which its compounded.
The way my pain neuro described it to me the longer we allow the pain then our brain thinks that is normal and then thats how we will feel for the rest of our lives.
So I was like ok I will try the botox. It took them almost 7 years to offer the Ketamine. I think they were just so focused on my terrible head pain.
I will also ice it too and you can try voltaren gel which can help with nerve pain . I do use it when I have bad flare. I think its now over the counter in the USA.
Angela
Wow thanks for sharing all this information with me! I will for sure look into this, as I am desperate to try anything at this point.
Take care,
Ella
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Hello ella
From your story you said you had a regrowth of your AVM so dont you think its related to the pain ?.
It is possible, but I don’t think so because I never had any pain like this before my bleed. I’ve also been told that my AVM regrowth would not cause any symptoms because it is very small.
Hey Angela,
My neuro “headache” doc wants to do Botox injections in my head because of my headaches - which vary in almost everything besides for the fact that they are always there. I’m kind of, wait no I’m really concerned because one of the rare side effects is swelling in the throat and esophagus. Uh, I already have a throat, vocal cord and esophagus (left side) that are paralyzed due to nerve damage from my surgery in January of 2018. And most of my long term symptoms from that come out of the category of rare and unusual side effects. I’m concerned that if my throat swells, and I’ve already lost half it, I’d be joining the Covid people at the hospital with the ventilators.
Yeah, anyone else have any ideas, cuz I’m pretty much not going with that one. At least not now.
TJ
Hey Ella,
I’ve had a few neurosurgeries. The ongoing pain has been tormenting from both head pain and body pain. I’ve tried every suggestion that has ever been given to me to ‘try’ and treat or at least manage my symptoms. But unfortunately none have been my ‘key’. My management has become primarily pharma based, but still, not my ‘key’.
I’ve tried Botox and if the source of the pain is related to muscle tension in the face, shoulders or neck area then Botox maybe of assistance. The Botox treatment is a drug that weakens or paralyzes muscle and reduces that tension. My pains are not tension related. The Botox treatment itself was VERY painful as no local anaesthetic was used prior. It stung. I had a headache before treatment, post treatment I was a mess.
I’ve also tried a TENS machine, hydrotherapy, acupuncture, Bowen therapy, massage and a whole chemist store of meds but none have been my ‘key’. Now please don’t get me wrong here, there were some benefits with each treatment in some way (Even if it was looking wrinkle free from all the Botox 
). Some people have found huge benefits with these treatments, my only wish is that I was one of them.
My recommendation here is ‘give it a go’, you never know, one of them could well be your key. If we reject a treatment option out of hand, we run the risk of missing that cure. One thing I have found is that none of us have exactly the same pain, so what works for ‘Mary’ may not work for ‘John’, but we need to go through the process ourselves to see if it works for us as individuals.
Merl from the Moderator Support Team
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@TJ127 I hear you - I am like you and if its rare I am usually the one who gets it, I was afraid to try Botox but was more afraid of my head feeling perm like it was so I was willing to try it. Only once did I get a droopy eye from botox and it was temporary and now my dr just does it a little higher. You might to try Occipital Nerve Block shots - its lidocaine and ripovacaine - It lasted for me about 3 weeks and had complete relief but now I am allergic well I think I have been allergic to lidocaine for some time …anyway my mom now gets them and the shots last longer for her. Also Ketamine is great too. You can ask for oral ketamine to try if you dont want to do the infusions.
Angela
Angela,
Thanks! I have put both Occipital nerve block shots and Ketamine on my list to talk to my doctor about. I will keep talking to the doc about Botox too - I don’t like my head feeling like it is - but looking at quality of life, it is a lot worse than if I didn’t have the headaches, but a lot better than if I totally lost my ability to speak or breath, so that’s a question too. I appreciate the input very very much.
TJ
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Hi Merl. Thank you for the advice. I was also thinking of trying Bowen therapy.