Tuesday, August 2, 2011

Nerves...Streams...Pools (Update)

Most mornings mom and I go for a walk (well, “roll” for me) around the parking garage that is part of our building. If we go early enough, before it is deathly hot out, you get a great breeze and awesome views of the mountain. It’s great exercise (for mom) and I take pictures of all of the cool different license plates I come across (there are so many in Mexico!)

On one of our walks a few weeks ago we had a little mishap. The short version of the story is while being pushed in my wheelchair I was accidentally pushed into a wall. The long story isn’t much more interesting, so I’ll leave it at that. I hit my left foot pretty hard. We quickly came back upstairs and got me into bed with pillows under my foot, but within 2 hours it was very swollen, throbbing, and already bruising because I am on blood thinners. Not good! ...time to call Dr. Cantu.

He answered. “Bueno!”

“Um…Hi…Dr. Cantu?... I think Jess broke her foot.”

Silence.

This poor doctor. I could almost hear his eyes bulging out of his head. Yet, he never loses his cool, ever. We love that about him.

He came over later and checked it out. He said because of the osteoporosis I have and how weak my bones are from being in a bed for years, it possibly was fractured…but even if I had an Xray and it was, he wouldn’t want to cast it because immobilization is one of the worst things you can do with RSD.

He gave me some extra medication to take for the pain and swelling and said we’d keep a close eye on it.

Unfortunately over the next week it was very obvious this was not healing the right way.

The left foot was still bruised, swollen and stiff, but that was to be expected… seeing as how the left foot was actually injured. What was more concerning was what started happening to my right foot.

In just 4 days, the right had become even more swollen and discolored than the left and I was having increased pain and uncomfortable sensations (like prickling running water.) By looking at my feet, you’d never be able to guess which foot was actually banged into the wall! So weird!

RSD is truly so bizarre. It’s hard to understand and even harder to explain. But I’ll try.

The best explanation I have heard for this is to try and imagine that your nerves are streams that carry information into little pools that form your brain. When you hurt your foot, the pain signals run along the stream that will get them to the pool the fastest- to alert you and protect you. For example, if you're stepping on something hot, your brain sends the signal to retract it ASAP.

Perceiving and interpreting pain is one of the brain’s highest functions.

As far as the brain is concerned, more pain=more damage. More damage=threat to survival. Sounds good. Having this built in ‘alarm system’ is a wonderful thing… until it malfunctions, as it does in RSD.

The brain can’t tell the difference between a malfunctioning nervous system and a healthy one… it just knows the signals it is being sent and the more signals that travel along these streams, the wider and deeper they become.

Now, picture the little pool in your brain that is responsible for perceiving pain in your left foot… and then right next to it is another little pool that is responsible for your right.

When the brain is flooded by a strong acute pain signal, the small pools overflow into each other, their water gets all mixed up. The brain becomes confused and isn’t sure where the pain it is feeling is coming from! Is it the leg, or the hand?… the left, or the right?

So it might start to interpret it as both.

Merging pools activate different pain streams and flood the brain with further confusion.

The thing about this type of spread is that it is actually taking place in the part of the brain that perceives that body part, rather than the actual body part itself.

So, my left foot was acutely injured, but because my most severe and remaining RSD symptoms have always been on my right side, years of chronic pain have made those streams deep and wide. My brain sent the ‘injured foot’ signal along the path it knew would reach my ‘alert system’ the quickest.

My nervous system was responding as if I had two injured feet- pain, swelling, discoloration and all!

Dr. Cantu was not happy to see this occurring and felt at that point having a series of booster treatments would be the best thing.

The boosters went really well and the swelling in both feet is much less. The purple discoloration in the left foot is almost completely gone and the movement is back to normal. The right foot still has some swelling and odd sensations, but they are less frequent and intense. I have never had boosters after an ‘acute’ injury before now, and the quick transformation is amazing to me. This stuff works!

My mom has felt so bad about this that I felt like even writing about it on here would have been like pouring salt into the wound. I keep telling her it’s not her fault. These things are bound to happen now that I am moving around a lot more, and the beautiful thing is that I am able to move around because I am feeling SO good!!

I’d appreciate prayers that my feet continue to heal in the right direction and that any possible fracture in the left foot will heal completely, on it's own, so that it doesn’t re-trigger this cycle again.

I am thankful for a God who saves, a doctor who cares and a treatment that works for me.

...I know I am blessed.

Thanks as always for your prayers.

In God’s love,

Jessica

--------

PS- Thanks for your prayers for my friends! Kerri has left the hospital and is on her way back to Pennsylvania! Also, I heard yesterday from Juan Pablo’s mom that he was successfully transferred back onto his own ventilator and remained on it throughout the day! He must continue to maintain stable o2 levels on his own ventilator before he can go home. Today he is that much closer! Continue to keep him in your prayers!

Ephesians 3:20

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”


**To post a comment click "comments" below**

15 comments:

Anonymous said...

That was a pretty good explanation of how RSD works in the body. Glad to hear that it was quickly brought under control. Your body is responding more normally.

Thanks so much for the update on Kerri and Juan. We love to hear when God answers prayers! Praise be His name.

We will continue to pray for the three of you. May God continue to strenghten your body, Jess, as you continue your journey to complete healing.

With love and prayers,
The Turners

Anonymous said...

Wishing you a quick "foot" recovery...you are always in our prayers. It's so good to see that you are out and about and enjoying it...Hugs and kisses to you and mom!
Love
Angela & the boys

Fern said...

I love the explanation! It is truly hard to express this disease to lay people let alone some medical people! Everyone gets stuck on the thinking of isolation and it is never that way with us! I loved the analogy! Yesterday, Theo and I went to Home Depot to return some floor tile samples. Seems easy enough right? Well, we made it through the store fairly safely as it meant only stopping at customer service and then heading for the exit. Unfortunately, just as I entered the exit in my wheelchair, a woman who was walking but looking the other way, fell into me! For a moment, I couldn't breathe, after that, out come more of the hard core medicines as the whole body was on fire and seizing up! My "pools" were flooding!
I tell you this, so that Sarah can feel less poorly. Theo has driven me into walls as well as some well meaning friends. It is sometimes hard to figure out just how big our chairs are! And their is always someone who walks without noticing. Makes me jumpy to be in a store but it is good for me to get out, so I try anyway. Sarah, forgive yourself. Jess... strengthen those bones!!!

I laughed inside when you talked of the silence on the phone when first you called Dr Cantu. I could hear it for sure! Ha-ha! "is this a joke?"

I am praying specifically for those feet- yes both of them. And I am so glad that you felt such relief from the boosters.
Thank you God!

Rosemary and John said...

Dear Jessica,

Like your Mom says "it's always something"! You are right to focus on the fact that you are well enough to be outside of your room and out of your hospital bed. That is a huge accomplishment!

Life is full of bumps, some bigger than others, but they are there and it is not realistic to expect that you will never, ever again sustain a bump. It is part of the re-training that your brain must experience. It has been so disconnected for such a long time, of course it wants to go down those familiar pathways. You are training it to recognize pain in a new "normal" way and that will take time.
Your poor Mom, she is only human yet we have all come to see her as Super Human!

I can remember the time when I caused John to have a huge relapse of pain because I lifted his arm up high over a post as we walked hand in hand and I instantly knew it was a big mistake. It just happened so fast! It was something we "used" to do and never give a second thought to; but that was before RSD.

RSD is very unforgiving, but we are human and so, we forgive and move forward. Dr. Cantu will do whatever needs to be done and although this may be a small set back, it will not stop your progress. You may just have to take things slower for awhile while your foot/feet heal.

We are praying for you Jessica and for your Mom. Just remember to carry a portable horn in your lap from now on!

Love & xoxoxo's

Rosemary and John

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mike kumala said...

hey jessica, i came across the fox news deal, im so sorry you have had to go through this it is really unfortunate for you and i wish you the best of luck that it will get better for you. add me on facebook if you want to talk about anything. im a retired army vet at 19 due to a permanent vein injury and know somewhat of how you feel def not the full thing. stay safe and dont injure yourself anymore than needed! enjoy the little things, although im sure you already do :D

Anonymous said...

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Thought this might be encouraging to anyone who may have an illness.

Sugei Avitia said...

Dear Jessica;
I wish, not only your leg gets fully recovered from RSD,but your full body. It's hard to explain, but things happen; I'm struggling with RSD for 3 years now, and 15 months ago while doing fisical therapy I broke my right leg; were my RSD started. At that time I didn't know I had RSD, but do to an experience I had before. I told the doctor not to cast it. I injured a tendon (tibia) I was running at the Gym 3 years ago. I went to see the Doc.. He said, it'll be ok. April-09. the pain increased, the Doc. couldn't understand the pain I was describing and by Nov-09 it was BAD!...He decided to cast it for 6 weeks. He thought that a fully immovilization will help the tendon to heal faster, but instead while wearing the cast, the peronel nerv got dameged and when he removed the cast on 12-18-09 it was almost impossible for me to walk. At that point they didn't know I was suffering from RSD, but just thinking about the 6 weeks with the cast and the horrible, electrical, and stubbing pain. I decided not to cast my leg. Now, I know it was a wise choice, but then I only listen to the needs of my body.
One thing for sure, you are in the bests heands; Doctor Cantu and God.... We are not alone just remember. Faith is being sure of what we hope for, and certain of what we do not see.
Sugei Avitia sugei12@hotmail.com

Anonymous said...

Oh my...what a journey! As you say and I believe too, there must be a reason this happened so that we/others can understand this RSD better. I would never have thought the body could work like that but it makes sense now.

May your upcoming days be filled with healing and relief and rest as our loving God knits your bones back together again.

I can only imagine how your Momma feels. Your loving words will comfort her and help. Jessica I have seen a lot of Moms in action and never have met one that is so devoted and patient as yours. I remember how she stood literally hours over the side rail of your bed singing softly to you as you were sleeping and healing. I remember wondering how does she do that? My back would be killing me after just a short time. I never heard one word out of her of how hard it was or anything except her love for you and hope and faith. You both are so blessed to have each other.

Praying for you all with love and hope and hugs and kisses!
xoxo
Nancy & Joe

Anonymous said...

Dearest Jessica and Gina, Once again I marvel at the resilience and determination that you two women have developed during this whole journey. The strength and faith that you have worked on and live by will get you through times like this. God is working in your life Jess. He is the driver and He knows the road. You are an excellent passenger and are letting him do His job in your life. This is a beautiful partnership! Hang in there!! Please give your wonderful mom a big hug for me!! Love always, Angel xoxoxoxxoxo

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Hopefull said...

I have had RSD for almost 4 years now, I feel your pain!! I just got my Spinal Stimulator after fighting for it for 3 years. I lost my state job and have been out of work for the almost 4 years. I think that was the worst for me is losing my job, when that happened a part of me died. As for the pain, you summed it up pretty good. I'm so so sorry that it has put you into a hospital bed and wheel chair, so far it has not done that to me, but there is not telling what it will do to me in time. I got my RSD because a doctor cut a nerve during surgery.
The doctor goes home and has a normal life and I'm left like this!!May God Bless you and stay strong, looks like we all have to stick together in this. The world is starting to know about this disease. ThankGod!!
Keep your head up, I will be thinking about you and praying for you.
Love, Sherry from Rocky River in Ohio

Anonymous said...

Jessica,
I just came across your blog. What an inspiration you are!
i have 3 boys (4 yrs, 3 yrs and 7 months) The 7 month old named Tiago was very very sick since birth. We were told that he was going to die here in Monterey and we found some drs in Austin Texas who saved his life. so funny how a city has something great to offer one person and not the other. We are back in Monterrey and he is doing amazing. He has a g-tube because he was intubated for the first 3 months of his life and now has a severe oral aversion. I have been battling my demons with his sitution , but know that we r fortunate to have him here with us , ALIVE!
Anyhow, i hope Monterrey is still treating you well. Anything I can do to help you please let me know!
with love,
Veronica

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)


As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!


Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.


Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.


Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!