Celebrating 10 years since my DX

Although this is my first post here, I have quietly prayed for and cheered you all on for the better part of a decade. I have also found encouragement in knowing that I am not alone. Thank you for being here and for sharing your stories. Here is mine:

The incidental diagnosis of my cerebral AVM happened nearly ten years ago. Although I was not experiencing any deficits, the threat of a massive brain hemorrhage was enough to convince me to seek treatment. After consulting with four neurosurgeons and three radiation oncologists, I decided to have cyber knife radio surgery.

In the first year after surgery, I suffered from severe and persistent cerebral edema, a side effect of brain radiation. I also experienced what was probably a stroke brought on by either the radiation or the side effects that it caused. The good news: a cerebral angiogram done five years post op confirmed that my AVM was completely obliterated. I am no longer at risk for a massive brain hemorrhage. Praise God. The bad news: to this day, I continue to be challenged by spastic hemiparesis, a complication which began four months post-op.

In addition to being an AVM survivor, I am also a nineteen-year cancer survivor. Praise God. My battle against cancer taught me that, with faith and perseverance, I can overcome great challenges. Just as I refused to let cancer defeat me, I refuse to relinquish hope for a complete recovery from spastic hemiparesis. As a result, I have literally been in therapy of one kind or another for eight and a half years.

The following is a list of the therapies that I have tried so far. I have listed them in more or less chronological order. However, many of them have been and continue to be concurrent.

  • Many months of a steroid, specifically Decadron, to control brain edema. Although I found it very difficult to tolerate, Decadron helped both my brain and my peripheral nervous system to heal from the trauma. Unfortunately, it also caused atrophy of my muscles, from which it has taken me years to recover.
  • Intensive inpatient and outpatient physical, occupational and speech therapy
  • Aquatic (pool) therapy
  • Underwater treadmill therapy
  • Equestrian therapy
  • Chiropractic care
  • Deep-tissue massage
  • CranioSacral therapy
  • Cold-laser therapy
  • Acupuncture
  • Adaptive downhill skiing
  • Feldenkrais
  • Therapeutic yoga
  • M.E.L.T. (for releasing tight fascia)
  • Non-invasive brain stimulation
  • Blood-flow restriction training
  • Dry needling
  • Functional electrical stimulation

My hard work and persistence have paid off, and I have made tremendous progress. One year post-op, I was only able to walk with a custom-fit AFO and two canes. I have now been walking (albeit with a limp) without any assistive devices for six and a half years. I have regained full use of my arm and hand. My cognitive/speech recovery is also very near 100%. Praise God.

I continue to have weakness and spasticity which affect my leg and foot. Last summer, I participated in a three-week outpatient physical therapy program which used the combination of non-invasive brain stimulation and high-intensity physical exercise. My goals going in to the program included relearning how to jump and run. With the addition of an athletic ankle brace, I was able to achieve both of those goals before the end of the program. Praise God.

The latest addition to my therapies are functional electrical stimulation (FES) cuffs by Bioness. I have been using both the lower and upper leg cuffs for about three months. So far, I am very encouraged. In the short time that I have used them for walking and training in the PT gym, I have already experienced a significant reduction in my atrophy and in my chronic hip and knee pain. With the arrival of spring weather, I look forward to training with these cuffs on my bike. I am hopeful that they will help me to achieve my goals of recovering strength and coordination and overcoming spasticity.

My spasticity manifests itself in three ways:

  • as velocity-dependent spasticity, which makes my muscles either freeze or go in the opposite direction when I change positions quickly.
  • as clonus, a rhythmic spasm which makes my muscles involuntarily flinch when I would much rather be resting them.
  • and as what my PT refers to as “tone,” which feels like invisible resistance bands that are constantly pulling me in the opposite direction from the way that I want to go.

Things that help my spasticity include:

  • Therapeutic massage
  • Acupuncture
  • Chiropractic care
  • An anti-inflammatory diet
  • Magnesium balm
  • Regular stretching and exercise
  • Regular sleep

Things that make my spasticity worse:

  • Caffeine
  • Sugar
  • Foods that cause inflammation
  • Inactivity
  • Too much exercise
  • Emotional and psychological stress

I have been offered Baclofen, but never tried it. I have had enough experience with medications to know that I generally don’t tolerate them well. One side effect of Baclofen is that it can cause muscle weakness. I have never wanted to take a chance with a drug that could be counter productive.

I tried taking Tizanidine for short periods. Initially, it helped my spasticity. Unfortunately, as the drug built up in my system, it made me feel increasingly more sluggish and it caused me to have bad dreams.

The next therapy on the horizon for me is called Lokomat, which is robotic-assisted gait training. I hope to use it in conjunction with my Bioness cuffs in order to improve weight acceptance on my weak side, to break tone (recover from spasticity) and to relearn a more fluid gait pattern.

No one ever said life would be easy. I believe deep in my heart that the struggle is so worthwhile. In the eight years since I was hospitalized with a stroke, I have managed to return to my full-time teaching job, I have seen my kids graduate from high school and go on to college, and I have returned to independently doing the physical activities that I enjoy: riding horses, downhill skiing, snowshoeing, biking, swimming, hiking and gardening.

I hope that, whether you are just beginning this journey or are a seasoned veteran like me, you find encouragement in my story. I would love to hear from others who are also overcoming spastic hemiparesis. Which therapies have you tried? What has worked for you?

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Congratulations and I’ll always be praying for you!

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Thank you Melissa!

I would just like to say “Welcome!” It’s great to hear your story and it is great to encourage each other by sharing. I feel as though if you’ve been hanging out here for all that time, you probably know me quite well, so it is good to meet you and I know there’s a role for you to be able to share with the good folks here about your battle with spasticity as they battle with theirs. There is great encouragement to be had from your story.

Thank you for introducing yourself. I hope you get as much pleasure from sharing your thoughts with people struggling through this as I do.

Very best wishes,

Richard

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Thank you, Richard, for the warm welcome. I read that you are suffering from tinnitus and bruit. I am sorry for your struggle.

It was because of tinnitus, vertigo, and my cancer history that I had the brain MRI which led to the incidental finding of my cerebral AVM. It turned out that my AVM had nothing to do with my tinnitus or my vertigo. My ENT, who ordered the MRI, diagnosed me with Menière’s Disease, a condition for which tinnitus, fullness in the ears (like someone is jamming their fingers in them), vertigo and bruit are all symptoms. The steroids that I took in order to control cerebral edema combined regular chiropractic adjustments to my cervical spine took care of my Menière’s Disease. Praise God, my symptoms are gone and the pressure levels in my ears are normal.

Whatever it is that causes your tinnitus and bruit, I pray for a cure for you, too, friend.

Honestly, the bruit was something I had which led to me self-diagnosing with an AVM and to go to the doctor, so it wasn’t a bad thing overall, though I worried about it a lot, once I had discovered AVMs. The bruit went away once I had my embolization but was replaced by quite a loud normal pulse noise! I think I was busy listening for trouble after the embolization and I magnified the sounds in my head like crazy.

Today, I do have tinnitus but largely I don’t focus on it and it stays in the background, not disturbing me. I probably don’t hear as well as I might, with it scribbling over everything but it doesn’t really get in the way. It may well get worse over time.

So, actually, I think I’m doing marvellously well: my adventure with AVMs is in the past, really, perhaps forever, perhaps only temporarily, who knows?

It’s good to meet you! And congratulations on 10 years progress!

Richard

I am glad to hear that you’re doing so well, Richard. Congratulations and thank you, again.

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Congratulations I’m glad to hear you’re doing much better after your battle… God bless!

Thank you Adrian!

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@Oak Wow thank you for sharing your story - it is such an inspiration and so wonderful that you are able to return to work!
I had a non AVM stroke before my avm and it impacted my left side which I was about to go in for shoulder surgery, so then being paralyzed for about six months I had a lot of atrophy my PT then used a combo tens/EMS unit - so during the exercise she would turn on the EMS side and it would send currents to wake up the muscles.
I also have ehlers danlos which we are known for having tight fascia so I am interested in seeing if anyone near me does MELT.
Thanks for sharing all what has helped you. Have you ever tried coconut oil in your diet to help?
Angela

@Angela4

Dear Angela, good to hear from you. I’m sorry to hear about your struggles with stroke, paralysis and EDS. I’m glad to hear that you are encouraged by my story.

For many years, spasticity made e-stim intolerable for me. Had I been able to use it to a greater extent early on, it would have helped to correct my atrophy sooner. The good news is that I am now using Bioness (a portable, functional version of e-stim) and it is having a beneficial impact on my atrophy. I have been using my Bioness cuffs for four months, and I already notice a significant difference in the strength, function and appearance of my affected muscles.

I have made many changes to my diet. Adding healthy fats, like coconut oil, has been one of them. For a while, I was using quite a bit of coconut oil, but then my LDL started creeping up. I have since cut back on it, but I continue to eat a lot of foods high in Omega-3s, like fatty fish, avocados and olive oil. Unfortunately, I developed a nut allergy after my cyber knife procedure. The cumulative effect of chemotherapy for cancer treatment plus brain radiation for AVM treatment on my immune system may have triggered this allergy. Fortunately, I can still eat pumpkin and sunflower seeds, which are chock full of healthy fats and magnesium.

I learned about MELT at my PT clinic, which offers fitness classes. You can learn more about it at meltmethod dot com. I was able to take the each of the MELT classes once (one class for hands and feet and another for core and lower extremities), and I continue practicing what I learned at home. Combined with regular deep tissue massage, it has been so helpful in keeping my fascia loose. Loose fascia is an important factor in my battle against spasticity and paresis. I hope that you can find a MELT program near you and that you find it beneficial, as well.

Take good care and don’t give up hope :slightly_smiling_face:

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@Oak Thank you for the link looks like we have a few method instructors in my area - I will let you know how it goes.
So glad you too are doing the good fats, I also adore the Kerry Gold Butter by the Irish cows that are grass fed, even my cats prefer it.
Weird I have gotten more allergies too since my angiogram/embolism now I am allergic to the numbing drugs in the lidocaine family.

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Happy MELTing @Angela4 :blush:

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