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AVM Survivors Network

“Understanding” – Another Key to Recovery

Getting a grasp on the physiology of the symptoms I am experiencing, I believe, is an important step in learning how to cope. Gaining that information by reading the real-world stories presented in this forum, coupled with subject-matter investigation of my own, helps me better assess my present circumstances.

One such symptom I face is that of SPASTICITY. It has become a challenge in the mobility of my legs.

Now, I’m not about to go into all the intricacies or nuances of the condition itself. Believe me, there’s more then plenty written on the subject if you have several days or weeks of idle time you need to fill. But be warned, there are also plenty of competing theories and the “experts” don’t necessarily agree in their conclusions.

Having said that, I hope, after reading what I have to say, you will be better informed to address issues (not just Spasticity) in your ensuing recovery phase.

My Spasticity is due to spinal cord compression caused by edema to the spinal cord as a result of the effects brought on by a Spinal Dural Arteriovenous Fistula (SDAVF). When finally discovered, the fistula itself resided in the intervertebral passageway between T11 and T12. The edema to the spinal cord extended from the T7-T8 disc space all the way down to the Conus with further enlarged enhancing veins surrounding the spinal cord from T4 to the Conus.

As the symptoms of the SDAVF (peripheral neuropathy, weakness, sensory deficits such as losing ability to sense heat or cold, heightened or diminished surface and deep pain reception, patchy areas of the skin feeling wet for no reason, urinary and/or bowel issues, and the inability to keep one’s balance, etc.) progressed from my feet to my waist between 2010 and 2018, the condition known as Spasticity also began to manifest itself until it too was entrenched bilaterally from the feet up to my hips in 2018. The Spasticity presented itself as a state of constant involuntary muscle contraction, interspersed with severe muscle spasms – many very painful, and deterioration in the range-of-motion in my ankles, knees, and hips. Muscle fatigue in my legs occurred over increasingly shorter time spans.

That’s all fine and dandy, but what exactly is Spasticity? Well, I’m glad you asked.

Basically, Spasticity, as I understand it, is a disconnect between the signals received and sent from the muscles, through the motor neurons, to the spinal cord or brain. Spasticity is commonly associated with those who suffer from Cerebral Palsy or Multiple Sclerosis. Although the effects are similar, the causes are vastly different. In the case of Cerebral Palsy, most often the motor cortex in the brain which controls voluntary movements is affected. In the case of Multiple Sclerosis, the cause is attributed to the eroding of the myelin sheath surrounding the axon associated to the nerve cell. More pertinent to this post are some other causes that produce Spasticity which include Traumatic Brain Injury (e.g. resultant effects of some Brain AVMs) and Spinal Cord Injury (e.g. resultant effects from a Spinal AVM or SDAVF). Spasticity does not necessarily present in the aforementioned conditions but if it does present, the symptoms could range from very mild to very severe.

I certainly can not comment on what others experience should they be symptomatic with Spasticity but I will describe what it feels like to me.

Imagine, if you would, having a sprained ankle but without the throbbing pain, bruising, or swelling. Just that limiting factor that prevents you flexing your foot through its normal range of motion. Next, pretend you have a Tensor Bandage (an elasticized bandage used for wrapping sprained limbs and such). Wrap that bandage really tightly from just above your ankle, all around your lower leg and include all of the knee while keeping it slightly bent. Before tying off the bandage, place a tennis ball in the hollow behind your knee and, holding the ball in place with the bandage, finish wrapping the knee. Now, assuming you can find a blood-pressure cuff as long as your thigh, wrap that cuff around all of your upper leg and inflate it. Don’t release the pressure. Take a belt and tie it tight across your abdomen just below the “hips”. Attach a ring to each side of the belt in line with the “hip bone”. Take a bungee cord and wrap it around the top of your leg and hook the ends into the ring hanging from the belt. Make sure there is no slack in the tension of the bungee cord. Duplicate with your other leg.

Having done all that, imagine moving your legs and feet. First your feet won’t behave properly because of the limited motion in your ankles. Your lower and upper legs feel like they are being squeezed all the time, even at rest. You can’t bend your knee very far because the tennis ball is in the way and will only compress so far. When you try to straighten or fully extend your leg, your knee strains against the tennis ball bandaged in place. Moving your entire leg forward or backwards strains against the tension of the bungee cord which is also causing pain in your groin.

That’s what my Spasticity feels like!

So, the purpose of this post is two-fold. I wanted to explain Spasticity and how it is affecting me, because I had never heard of the term before and maybe some of you weren’t aware of its nature either. (It could be just me – I don’t get out much!!).

The second, and more important, reason for posting is to emphasize the need to be informed and prepared. Knowledge, at least for me, is vital in the understanding of what I am about to put myself through to achieve the best recovery I can. I hope none of you have the extent of Spasticity I do but understanding what is causing some of my limitations will help in diminishing possible frustrations in the future should I not progress as fast as others with seemingly the same base diagnosis.

We will all face our own challenges, our own hurdles, but we are Survivors. And as Survivors, we cull from the resources at our disposal. This forum, and the people contributing to it, is one of the best, if not the best resource available.

Use it. Learn from it. And get well.

Brent

1 Like

Brent,

I’m the same. It was through research and understanding others’ experiences in this group that I came to terms with having an AVM. So it’s great to tell your story in the expectation that it will help another person in another placed at another time. I’d suggest you edit the title to something more obvious.

Best,

Richard

Hi Brent,

As always thank you for the truly informative post!! I have to admit I didn’t fully understand what the term spasticity meant before, especially in terms of cause and symptoms. I thought it only had to do with muscle spasms but not
the extreme tightness also. Your detailed description is so incredibly vivid and useful especially regarding the tennis ball in the back of knee!! And the bungee cord and tight bandage and blood pressure cuff. Its so hard for me to explain why I can’t straighten my legs well when walking. Does baclofen help with your symptoms?

Without this forum and especially your detailed (and witty) posts I would be so lost. Please keep the posts coming. I learn so much each time and it always feels good to know someone out there is going through a very similar experience that for me is so hard to explain.

Stephanie

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Hello again Stephanie,

I’m happy you found the information presented helpful. And thank you for your words of encouragement, they are always welcome.

I am not on any medication at present, but I have looked into Baclofen. It has been around for some time and has been a tried and true aid in treating Spasticity for many years. I’ve always been a “No Pain-No Gain” proponent and generally opted for a more direct approach over the taking of medication. However, in this case, I find myself at an impasse. Nothing I’ve tried to date (massage, stretching, light resistance training) has had any effect. So Baclofen is at the very top of my list to discuss with my doctor on Monday afternoon. It might be what I need to get a “leg-up” (so to speak) on the situation. Enough to relax the muscles and tendons so that more traditional physical therapy methods have a chance to take advantage of the increased range of motion.

I agree with @DickD. The title of the post (Hurdles?) could use a makeover. I began writing this post a couple of days ago, but when I finally looked up from the keyboard I found that it had morphed into somewhat of an epic tale. I know what you’re thinking … It was a bit of a shocker to me as well – How did this guy, of so few words, end up with a novel out of a simple post?? :wink: I condensed and heavily edited the post but the title remained as originally conceptualized.

I have modified the title, along with the lead-in to the post. Hopefully the new version better reflects the finalized theme for this post.

Hi Brent,

Thanks for the great detailed post.
I am facing the same problems
I had my spinal Avm type 2 removed from t9-t11 2 years ago. Till now, after 2 years of intensive physiotherapy, I still can’t run or jump. I get back pain and hip pain whenever I jump. If I walk too much or do more exercises, it hurts too. Hurts so much that I can’t even sit down in any position. And I feel so tight on my right side.
Have u tried Botulinum Toxin (BTA) Injections?
My neurosurgeon suggested me to go for that.

Hi Glad,
I tried The Botox injections twice ,in my upper legs and my caves .
For me ,it did not work .saying that I think you should still try it maybe it will work for you depending on your health issue .

Thanks George for the reply.
ohhh.
hopefully it works for me

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Hello Glad,

My doctors have not suggested Botox as an alternative as yet. I believe they want to see how I respond to Baclofen. Speaking of which, I had to curtail for the time being as I contracted a Urinary Tract Infection and had to deal with that before starting the Baclofen again. Yesterday I was ‘officially’ cleared to begin Physiotherapy so I will coordinate with the therapist regarding Baclofen and it’s role in my progress.

A number of members in this forum have had Botox treatments and have had excellent results but as you have read @George3 did not have favourable results. Each of us respond differently and progress at different rates.

If you do decide to have Botox treatments, do let me know if they help with your symptoms. I would be interested.

I wish you well in your continuing journey to recovery.

Brent

Hi Brent,
Thanks for your reply. sure, i will update you on my progress.
i always get UTI too, ever since my operation.
my doctor also suggested doing nerve block injection. has anyone tried that?

Glad,

Did you get a chance to try the Botox injections? I went on baclofen for about 10 days and the side effects were noticeable almost immediately. My therapists suggested I stop. My neurologist suggested either Botox or the baclofen originally. I’m worried about it because he said the effects could last 3 months so if it makes my leg weak like the baclofen it will slow my recovery. I’m on a roll right now but the spasticity seems to be holding me back and I want to get some relief.

Thank you,
Chris