Endovenous Radiofrequency Ablation · Restless Leg Syndrome · Uncategorized

My Vein Ablation Experience, Part 1 (Warning, photos of immediate post procedure at bottom of post)

I had part one of my vein ablation done today.  My procedure was Endovenous Radiofrequency Ablation, and was done on my left Greater Saphenous vein.

*Disclaimer:  This is a story of my experience.  This is NOT medical advice!  

I walked into the office just a touch on the nervous side.  The reason for my nerves was that I wasn’t quite sure what to expect.  My doctor had explained what to expect, but she cannot convey the patient experience, only the technicalities of the procedure.  That is one of the reasons I wanted to share this, because reading the story of someone’s experience would have helped me understand what to expect.  I had the procedure done at Liberty Surgical Associates in Holland, Michigan, by Doctor Liberty Hoberman, who is a board certified general surgeon.  Dr Hoberman has an excellent bedside manner, and confident, assured demeanor that adds to her technical surgical ability making her an excellent, well-rounded doctor.  When I arrived, the nurse showed me to a changing room where I put on a pair of disposable shorts.  Dr Hoberman does these procedures right in her office, so I was familiar with her staff from previous visits.

After being shown into a room, I met with the venous sonographer (Angela) who assists Dr Hoberman in the procedure who reviewed the details, aftercare instructions, and any questions I had before getting my consent for the procedure.  She then covered my lower body in sterile drapes and prepared the equipment and explained what she was doing as she went, while we exchanged stories of our weekends.

Dr Hoberman entered the room after everything was prepared, and double checked to see if I had any last-minute questions, and reassured me that the procedure should be only a minor inconvenience.

The ablation is guided by ultrasound, so the technician scanned my whole inner, upper leg and into my calf to get an overview of my vein, and the best place to insert the catheter.  Then came the pokes.  I lost count of how many, but there was numbing medicine to numb my skin while they injected numbing medicine around my vein.  The medicine not only prevents pain, but it insulates the area from the heat of the ablation.  This took the most time out of anything.  I’m fairly stoic and have no fear of needles, so it wasn’t a big deal to me, though some people need a little anxiety medicine to get through all the pokes.  During the pokes, the sonographer kept tapping my knee.  At first this perplexed me, but the reason is simple, it distracts my body and my brain from what is happening.  In other words, it is a simple way to give reassurance and good patient care.  I was told what to expect at every step, and reassured that everything was going well.

When the numbing was completed it was time to activate the catheter that had been inserted into my leg, below the knee, earlier.  I was told that if even a twinge of discomfort came up to let them know so that they could stop and add more numbing solution to the area.  The machine came on with a high-pitched sound, I honestly expected to feel something, but didn’t.  I saw the temperature rise to 120 degrees, and wondered how that low of a temperature could ablate my veins, the realized that it was in Celsius, not Fahrenheit.  (gulp)  I didn’t like that part, nope, not at all.  It was a bit of a mental trip, but it made no difference, I couldn’t feel it.  They moved the catheter down my leg in measured increments to completely close off the vein.  Toward the distal (down in my calf) end, I felt some heat, and indeed, when I said the word they stopped the procedure and added more numbing solution, then finished up.  The heat was only mild discomfort, and it stopped just a second or two after I told them, so it wasn’t a big deal, but it was slightly alarming.

Then the catheter was removed, and Angela held pressure on the opening where it had been inserted.  She cleaned me up and removed the drapes, which were held to my legs with adhesive.  The removal of the adhesive from my hairy legs was easily the most painful part of the whole thing.

I return for an ultrasound on Thursday and to do my right leg on Friday, then next week another ultrasound, doing the small veins in my calves, and another ultrasound after that.  The ultrasounds are to ensure that a thrombosis (blood clot) hasn’t formed.  It’s a remote possibility, but the fact that it’s possible means that catching it early by ultrasound is good practice.

I will be far less nervous going in for my second leg.  As far as surgical procedures go, this one was a cake walk.  I do give credit to a fabulous doctor and her reassuring manner for a good part of that.

Below are photographs of my leg after the procedure, the swelling is from the numbing solution.

Now time will tell if this procedure helps my Restless Legs Syndrome, the reason I had it done.  The aftercare is simple, walk a lot, don’t run, and use my thigh high compression stockings for a week.

Immediately following the procedure

I have to wear the thigh high compression stocking until tomorrow afternoon, then during the day, every day for 7 days
special needs parenting

What Does Real Self Care Look Like When You Parent Complex Kids?

I’m getting a mani-pedi today. If there’s a poster for self-care a mani-pedi would be on it. It’s relaxing, makes you look better, and it’s a couple hours away from the grind. The bonus is that I have a couple of gift cards to offset the cost so it’s not even a ding on the budget.

As spring arrives I will take pleasure in my beautified bare toes and most certainly ruin my mani by the end of the day, but that’s not the point. The point is the break, the focus on myself. A much needed boost to my spirit.

But is it ever enough?

I believe in self-care, truly I do, but (you know what they say about “but”, ignore everything before it) it’s like offering a candy bar to someone suffering from malnourishment. It will taste great and give a momentary pause to the pangs that rumble nonstop, but it will do nothing to correct the underlying void. A malnourished person needs not a treat, not a single meal, but access to long term sustinence.

And the full time parent of complex kids doesn’t need a mani-pedi. It’s a candy bar that will only quiet the pangs momentarily.

What is needed, truly needed, by parents, especially the primary parent of complex kids, is much wider and deeper than a few hours of self care can begin to address. When you consider that moms of autistic kids have stress levels akin to that of combat soldiers it becomes apparent that a brief outing isn’t even beginning to address the issue. It’s a bandage on a hemorrhage.

What is necessary is wraparound services. Respite, extended school years and more.

We recently found out that Ben was approved for the Children’s Waiver Program. This program will provide for him all the benefits of Medicaid, despite our income being over the threshold, as well as respite, Community Living Services (someone to help Ben learn how to do things that most people take for granted, like tolerate an outing to the grocery store). When getting the news of approval I felt like a someone took me by the hand, showed me a farm with a garden full of bounty and a barn full of animals that, if well cared for could nourish our whole family indefinitely.

I’ve been told that the church or private charities should step in. Idealistically I agree wholeheartedly, but I have yet to find a church or charity that is equipped and capable of stepping into the enormous gaps that families like ours have year after year.

It takes interventions like the Children’s Waiver Program to make a difference in the lives of families like ours, there’s really no substitute.

I’ll go get my mani-pedi today, and it will be a treat, but it won’t satisfy. It won’t fill the void and I’ve learned not to expect it to be enough. I’m beyond grateful to anticipate finally having the resources we need, but at the same time, I look at so many other families I know, moms who live as combat soldiers who need it just as much as we do.

We need to do better.

special needs parenting

My Love Letter to All those Moms of Really Tricky Kids

When I found out that my son was born with a disability, I felt isolated and alone. As his mother, I landed in this category of different.  As much as I embraced my child and his disabilities, I was the mom who spent hours a week with Early Intervention and had a bookshelf dedicated to my child’s needs. In those early days I felt a bit lost, alone on my parenting path. But along the way something remarkable has happened. 

Then we hosted a parent coffee for other parents of kids with Down syndrome when Alex was an infant and only one couple showed up. Their son was just a smidge younger than Alex, and we spent the evening exchanging stories. For the first time Mike and I shared some of our insecurities about our new roles as parents of a child with a disability, and so did they. And suddenly this different path felt less lonely and strange. We had company, there was strength in the companionship there was something magical about finding this couple. We didn’t know it then, but they was the first of many people who would cross our paths on this complex parenting adventure. 

When I talk with most women, they try to understand, they ask questions, listen carefully and are sincere in their efforts to grasp what our lives are like. It’s necessary to have these exchanges so that others may know at least in a general way, what this different path looks like. But my role is that of an interpreter, always translating, life on this path that they will never actually experience and only ever see the tip of the iceberg, having no idea of the enormity of what lies beneath the surface, I often feel as if I leave them more puzzled than enlightened. 

Then, when I connect with another complex mama, everything fits. Instead of meager attempts to show them a snapshot of our lives, they’re finishing my sentences and nodding along. I don’t need to translate because she’s fluent in my language. Without even trying, she recognizes the vast enormity of the iceberg, because she has one (or more) of her own. It’s effortless, it’s as comfortable as as my favorite pj’s.  Sometimes I bring out the deepest, darkest wildest stories, the ones even close family members never hear, just because I can. The catharsis is epic, because when you find those moms, they can match the stories without even blinking. 

There’s nothing like it. 

I’m a validation junky. If it could be manufactured into drug form I’d need unlimited refills to ensure I’d never be without. Getting that connection, that understanding is a necessary as air and water 

I’m weary of the overuse of the word “tribe”, I’m not one for clichés or cultural appropriation, so I avoid the term, but I’m not sure there’s an adequate synonym. Mom’s of tricky kids are my tribe, my clan, my people. I could not make it through this adventure without them.  No matter what happens, no matter how odd I feel, whether I’m overwhelmed or overjoyed, I can count on those few people to just get it, to cry or cheer along with us, to share our joys and sorrows in true community.  

Dear moms of tricky kids, with every fiber of my being I am grateful to you. For your unconditional acceptance and unity. You are the sisters of my heart and I couldn’t do this life without you.
*Disclaimer:  While this is written by a woman to women, by no means do I exclude the fathers. The men on this road are just as valiant and worthy as the women, but by nature of being a mother, I do relate and connect mostly to other moms.*

special needs parenting

When Sensory Issues Collide

When Alex was little I learned about Sensory Processing Disorders. The OT teaching the sectional at the conference I attended had participants take and score a sensory profile. Mine showed moderate to severe sensory dysfunction in all areas.  I’m mostly defensive. I don’t like noise, most touch feels overwhelming to me, especially on my face and head, and I don’t like too much vestibular (inner ear) stimuli, but I move my limbs a lot, especially when I’m tired or stressed. I do have oral/taste cravings though…so if you catch me swiping all your Wint-O-Green Lifesavers and chomping them down one after the other, I ask for forgiveness in advance, it’s hard to help myself. 

Then along comes Ben. He soothes himself by touching my hair, he’s hearing impaired and seeks noise all the time, except if it suddenly becomes too much, at which point wailing ensues; and he can’t stand my jiggling. 

We’re quite a pair. Everything about my sensory needs demands quiet solitude and everything about his needs is exactly the opposite. And we’re constantly at odds. 

It’s spring break and my husband is working out of town. That means from the time he gets up before 5am until he falls asleep in my lap at 8:30pm, we delicately navigate the minuscule space between his needs and mine. 

Because I understand his needs, and I get that they’re needs, just as much as mine are. But sometimes it’s impossible to take care of him and myself.  Sometimes I hide. Sometimes I lose my cool. And I always always feel rotten about it. 

It helps when the weather is fine and we can both blow off steam outside, that seems to be our sweet spot, playing outside. But when the weather doesn’t cooperate and we’re stuck in these 4 walls, all bets are off. 

This is where self care reaches a dead end. I know beyond a shadow of a doubt that I can only be the caregiver I need and want to be when I prioritize self care, but how do I make that happen on long, rainy weeks, cramped into a house around the clock together. Because believe me, going out to do something “fun” won’t help. 

I adore this child beyond words, and I will never stop seeking those ever evasive solutions to these situations, for him and me both. 

Restless Leg Syndrome

Restless Leg Syndrome and Vein Ablation 

If you ever want to get completely hysterical, try night after night with Restless Leg Syndrome.  Mine has come and gone for years and steadily built over the past few years to the point where on some nights it’s uncontrollable. Last night was one of those nights. 

Staying in a hotel room with my husband and 3 children, I took extra Mirapex for the night, knowing that after a few hours of driving I would need it, only to have it not work and need to add Benadryl on top of it. 

I’ve tried every possible natural remedy, and have been taking Mirapex at ever increasing doses for a few years, only to continuously have breakthrough symptoms.  Previously I tried other meds and nothing else worked either. 

By happenstance I mentioned it to a doctor I see for monitoring of my breast cancer risk (I’m in a high risk category) and she recommended vein ablation for RLS. After looking into it, I found that data supports the practice of vein ablation for RLS, yet I was hesitant. I have measurable venous insufficiency, but no varicose veins. So I waffled and hemmed and hawed. 

Now, a few months later with my RLS steadily worsening and summer just around the corner (I wouldn’t want to have to wear my compression hose for recovery in July), and a plan to relocate 200 miles away from my trusted surgeon, I am taking the plunge and have scheduled my vein ablation procedures starting next Monday. 

I plan to photograph before and after the procedure, and during if my doctor consents, as well as documenting my experience and outcome. 

I’m still uncertain about this, but at a certain point desperation takes over and that point has arrived, so I’m taking my chances with a low risk procedure. I hope that my experience will be helpful and informative for others in the same predicament 

advocacy · parenting · special needs parenting

Autism Awareness:  Autism Related Anxiety and Obsessive Compulsiveness 

There’s this thing that happens. When Benjamin knows he’s going somewhere his anxiety skyrockets and he perseverates until he leaves. 

So, yesterday when he went to Grammy’s house, we told him when it was time to put his shoes on.  Even though he loves going to Grammy’s house, from the time he finds out he’s going until the car is under way, he cannot avoid an anxiety attack.  As soon as we leave his world is back in order and he’s just ducky. 

This goes for any outing. 

The anxiety used to cause vomiting, but thankfully now it’s only gagging and retching. 

I suspect there are a few factors playing into this. The perseverative behavior of autism, the inability to tell time, which is truly a complete incapacity to understand the flow of time at all, and the intolerance for having any need go unmet.  It makes for tricky parenting. 

In response we go into ninja mode. 

Ninja mode means that we sneak around and go to great extremes to avoid raising Ben’s suspicion that we might be leaving. For example, for a visit to our new house I did all the packing while he was doing his flush and seated on the potty for an hour. 

It’s a high stakes game, because if we slip and he figures out that we’re going somewhere we get stuck in the anxiety cycle of him asking repeatedly “Go bye bye?”  Or if he understands the destination, “Go Grammy’s?” Or “Go doctor?”   It happens a few times a minute from the moment he realizes we’re supposed to go somewhere until he is out of the driveway, and is punctuated by his retching and gagging. 

When such a drastic error occurs it’s often best to just leave the house and drive around until it’s time to arrive at our destination. Distraction rarely works. Picture schedules don’t help, and once the anxiety is triggered there is no going back until we leave. 

Anxiety disorders are common in people with autism, as are the obsessive compulsive or perseverative behaviors exhibited here.  This is just one of Ben’s flavors of autism/anxiety/obsessive compulsiveness, one that significantly impacts his quality of life and ours.  Ben has an unspecified anxiety disorder that has some qualities of separation anxiety plus his own little spin of anticipatory anxiety. While he has some significant obsessive compulsive behaviors, he has never been diagnosed with the disorder. 

Autism is a spectrum disorder and presents differently in each individual, this is just a brief illustration of how autism impacts Ben. This is why supports and therapies are crucial, because it’s the best way to build his tolerance for normal daily activities so that he can live a full and complete life with autism rather than being isolated by it.