Hi, new here 
Had a brain haemorrahge due to an AVM way back in 1996. I'm still having related problems and degeneration. Nothing I was ever warned about! Was hemiplegic LT side but can walk with stick now + have petit mal epilepsy. It's the overwhelming tight spasticity of lower leg/ankle/foot and muscle wastage that I can't hack. Had loads of corrective foot surgery and now chronic hip pain and another op due.
Anyone else struggling to cope with unforseen post-head trauma effects???
welcome iam wife of a B.I survoiur who luckily doesnot many physical effects of his A.B.I now you have found us try headway. have you been offerd any physio?
Hi Yes I've had years of physio and have been seeing them off and on to revise my stretches and core strength exercises. Tbh I don't do the core strength ones much out of laziness lol but do stretch my leg and foot. Moment I start walking, it seizes up again so I just put up with it. I'm new here and will try headway, thank you. Your husband is very lucky to not get any serious effects, hope he's coping.
aawww thanks yes he copes well desipte the hole in his skull! soon to be coverd with a plate.iam no expert but do try to do as much pyhsio as you can the brain does start to rember to make those limbs work better again xxx i can see its not always easy though
Hi there SGirl ,
Welcome to our corner : )
There are a few of us on here with spasticity issues. Mine is generalised mild/moderate but worse on the right ( suspected Encephalitis 3 years ago/possible concurrent ms ). It is considerably worse at the mo due what appears to have been a recent relapse.
Not sure how much information you have been told and it is difficult to find much online about prognosis for spasticity. I will try to find some decent info and get back to you on that : )
96, so that is 19 years ago? I do know that long term, if severe enough, it can cause degenerative problems in muscle tissue, tendons and joints. Are you on any antispastic medication for this ?
Spasticity is due to upper motor neurone damage, wasting is due to lower motor neurone damage. However, wasting can occur as a by product of normal muscles being overwhelmed by other local ones that are spastic , rendering them unable to be used effectively - so natural wasting from lack of use.
The corrective surgery - what position was the foot lying in and have they cut tendons etc ? Is the hip problem stemming from local spastic muscles or as a result of unusual wear because of your different gait ?
I will try to find some info.
Kind regards,
Angela x
I am assuming you developed contracture.
cirrie.buffalo.edu/encyclop...
Did they try all of these before deciding surgery was the only option and did you get adequate physio/ were able to maintain home physio exercises by yourself before and after procedures ?
I am thus far v. lucky that I have no permanent contracture and can gently exercise to help keep everything stretched and in use, although I walk pigeon toed ! x
Aw I love pigeons! Seriously though, good you're managing and have no contracture.
Wow no all those treatments weren't tried except gentle stretches which I felt had to be done every minute as I'm constantly tight and decreased feeling. The equinous deformity developed and I was referred to orthopaedics who have been snipping my tendons and sorting out my toes over last 7 years or so.
It's a lot of information to take in but already i see medication better suited to stroke victims so will tell my gp. Unhelpful neurologist discharged me ages ago but maybe I'll get refered back.
Thanks so much for your help and information.
Take care, Sharon x
Hi Angela, thanks for your reply
I'm really sorry to hear you're suffering too. It's an awful affliction and you're right, getting proper help/advice for it is difficult - even from the neurologist!
The lesion left on the surface of my brain left me with, amongst other things, numbness from my left buttock down, worsening at lower leg. My awareness of where it is is affected like if I'm lay on my front and raise it up in don't know where it is. Over time, it seems the lower leg muscles that still work have over compensated and are thicker. The tibial front and inner leg muscle has depleted causing a 40% reduction in size. Horrible!!!! There certainly is contracture of the foot and some toes had clawed. It's a now a size 4 and my right is a 5.
I developed a terrible equinous deformity which was repaired surgically by tendon and muscle shifts plus lengthened achilles tendon. Three toes have been straightened and I've had a fusion of big toe. I walk much better aesthetically but still tight and sore. Foot is heel down but keeps being pulled sideways.
Botox injections helped a bit. I take baclofen 20mg tds.
Seems the hip pain and recurring bursitis stems from my uneven gait. I've been referred to the physio - again!
Are you on any effective treatment?
I'll have a look at the links below.
Sharon x
Hi Sharon,
I declined meds when offered by neuro 2 years ago - I didn't want to risk any side effects, fatigue, increased weakness etc, as I had been told on my return to work that I needed to do 6 months sickness free ( as I had been off 6 months ) to work off the absence warning I had accrued I and felt I could manage as I was. I did ask for physio instead but he declined.
So I used walking, stretching and gardening as my personal physio methods ! I am generalised but milder, whereas you are more focal and severe. If this is as painful as I suspect it is , it needs addressing.
Are you on the max end of Baclofen ? Perhaps there are alternatives you could try ? You should be weaned off Baclofen slowly, not abruptly, if your GP wants to try an alternative.
I am lucky that numbness has been transient for me and I have regained full feeling both times.
Physio may have some ideas, would you benefit from some kind of foot brace or special shoe insert ?
Your hip sounds to be the unfortunate by product of all this.
I hope you can get some pain relief and better function soon.
Take care,
Angela x
I'm on a big dose of baclofen, I think, it's 30mg tds. It helps my fms more than anything!
I imagine your generalised spasticity is a bit easier to cope with. I want my foot lopped off some days lol.
I've got a night splint that holds my foot in a good position and stretches the heel and back of lower leg. Also a splint that's like a straight jacket to prevent foot drop from getting tired when walking.
The physio is going to see me again soon.
You're dead right about medication side effects. The tiredness is the worst. Makes you grouchy and impatient!
Hope you're okay today x
Hi, S Girl, I've had same as you, at different times through my whole life. I'm now 68.5
It was wondering what caused my AVC, that has led me through a jungle of whole health issues since a baby. Most of it seems to be more connected to my Thyroid and the Adrenal Axis.
Last year I was diagnosed initially as having autoimmunethyroiditis (Hashimotos), so my immune system is compromised! But I already know I have immunity against TB, having had a TB infected gland removed as a baby. Also I had several different infections, affecting bones and tendons in my right foot necessitating 3 diff foot ops over the years. So my worst current problems started 3 months pre-TBI, with a low platelet blood count, plus wrong medication in adulthood a few years ago, taking Metformin with Levothyroxine both prescribed, which in turn left me with a swollen spleen.
Basically what goes through our bodies via the endocrine system, also goes into the Liver and via the bloodstream into the brain.
I suggest you get some blood tests done for Thyroid which as well as standard TSH,,should also include FreeT3& Free T4, Vit B12, Ferritin & Folate. Also ask for LFT (Liver function Test) - Platelet And Leucocytes blood counts/testing.,if your doctor and you can't get to bottom of things with some of that, I'd be greatly surprised! Your story to is too similiar to mine, except I was pre- you are post BI.
Get copies of all blood tests, Thyroid UK community admins will help you analyse the Thyroid testing. The other things you can post on here or PM me if you want with them.
I've had every one of those tests myself over last couple of years,,which is helping me get to bottom of things. But I do suggest you sit down and make a list of everything medical you know you've had since birth. The What, when and why!
When you know those answers, then you can start treating your self properly through better vitamin and mineral intake in correct quantities with the correct foodstuffs, as well as supplementing if necessary with guidance from your local chemist pharmacist.,they know more than the doctors do is my experience.
Whatever variety of meds you take you can check them out on drugs.com, Labtestonline are also good for explaining what the various tests are for and analysing results.
Good luck!
Hi SAMBS thanks for your reply!
Sorry to hear about your suffering since being a baby, it must be challenging for you coping.
I've just had extensive bloods and all was within normal range however my thyroid function was borderline low. Under active thyroid runs in the females on my mum's side.
My arteriovenous malformation was just described to me as a vascular abnormality since birth. Mum felt guilty about her being diabetic and on insulin but it wasn't a causing factor.
I've only just started taking vitamin and mineral supplements for my wellbeing and should read up more thoroughly on all the drugs I'm on!
Everything I've had since birth? That's a very interesting excerise to do and I'll see if there is a pattern of events. I definitely know my spasticity stems from the bleed and subsequent fibromyalgia and chronic pain from several factors.
Take care, Sharon x
NO probs. You too x
Hi S Girl,
Welcome to the friendly and helpful forum. XX Nick
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