Our Family's Journey With Trigeminal Neuralgia - What YOU Need to Know.

Thank you Rebecca Thorpe.

Trigeminal neuralgia is a chronic illness my husband (J) was diagnosed with 6 years ago. 

Here are 3 Things I want you to know:- 

1. Trigeminal Neuralgia  is a brutal, relentless, unpredictable disease with no permanent cure.

What is trigeminal neuralgia (TN)?

Source: Trigeminal Neuralgia Association UK  

      TN is an excruciatingly painful and debilitating condition, known as "the suicide disease."

     
 It is regarded as the most painful condition that is known in the medical world. It is more painful than kidney stones, giving birth or a heart attack.

     
 It is a disorder of the trigeminal nerve in the face which results in its overreaction to everyday stimuli, such as talking, eating and light touch.

      
TN triggers a violent, electric shock-like pain which can last for a few seconds to a few minutes and repeat in episodes lasting weeks and months.

     
 The pain can also be described as stabbing, shooting, burning, excruciating, and unlike any other pain previously experienced.

     
 Normal painkillers, even morphine, have no effect and initial treatment with anti-convulsant drugs can have very unpleasant side-effects.

      
When these medications cease to be effective, or the side-effects become intolerable, various types of surgical procedures are carried out but to date there is no known cure.

     
 Although uncommon, children and babies can also have TN.

2. My husband is still living with a form of this disease. 

He had brain surgery 3 years ago to put an end to  his TN which was no longer responding to strong drugs of any kind.  I wrote in my updates at that time, that the surgery had successfully taken away the brutal stabbing, electrical pain that he was experiencing in his face 24/7 without a break before the surgery. Thank goodness that still holds true and we are extremely grateful for that outcome.

However TN is a dark enemy....

Snow - How to Find a New Perspective on an Old Problem.

Snowy Elstree, UK by Sara E via FB

I want to introduce you to my friend Jo who lives in England. Jo's husband is in his 70s and has had trigeminal neuralgia* for 7 years.  Jo and I 'met' when she stumbled upon my blog. We have emailed back and forth and I have certainly gained strength, insight and tremendous support from my new pen pal and our growing virtual friendship. 

One of the things we have discussed a number of times,

Brainstorming

Please note:- All these posts appeared previously on the Lotsahelpinghands website and  documented my husband Jonny's brain surgery and recovery between October 2011 and February 2012 . The most recent post appears first.

The color (colour) of the sky

posted by Gilly Cannon, Thursday, February 2, 2012, 5:15 PM

Dear Family and Friends,

(I still find myself writing about our experiences and thought I would share this with you. I’m sending this through the LHH listserv for now. If you would prefer not to receive any more messages –please feel free to take yourself off the listserv.

Many of you have given me very encouraging feedback including an idea to start a blog or submit some of my writing to a newspaper. If you have any further thoughts on this or anything else I’d be delighted to hear from you!!)

Last week, Jonny went off to school and I felt as though I had just said goodbye to my pre-schooler. Don’t get me wrong, Jonny is still in his forties, my husband not my child and very sharp with it, but for the last 4 months I have known everything about what he has done with his day. I knew when he slept, what he ate, if he had pain and what made him laugh or squirm. Now he has gone to school and is immersed in his world without me! Now of course, I am glad we have reached this point. It is a great indicator of the distance Jonny has travelled on the recovery map. He is exhausted by the end of his time in school and needs a nap (I told you there were similarities with a pre-schooler!) but he is intellectually stimulated, glad to be grappling with issues and excited to be back at the helm.

I would love to be able to tell you that as an outcome of this crisis the sky looks bluer, the birdsong is chirpier and every day is a day to value. Apart from being very clichéd it just isn’t true. Since Jonny’s return to work I have been in a haze. I am in the house alone and often find myself sitting very quietly, listening to the silence or driving at 20 miles an hour with an irate driver hooting behind me. I am trying to align what we have been through with the world that everyone is living in and yet the puzzle pieces just don’t quite fit. I am walking with friends yet I am apart. I am browsing the grocery store but I am far away in my thoughts. I realize that although in many ways our lives have been on hold these last few months, they have also been moving forward but at a different speed and trajectory from regular life and now somehow these two paths need to rejoin. So if you find me a little detached, thoughtful or quiet I think it is because I am finally processing what I could not conceive before. I am weeks and weeks behind, in absorbing the experience of the rollercoaster of illness, surgery and recovery, fears, panic and hysterical laughing that you would hear if you ever actually forced me onto a rollercoaster. So thank you for your patience, I know with time the two worlds will fit back together, and when I return, I think this experience will color my view, my decision making and perhaps the sky.

Love and thank you for continuing to inspire me.

Gilly Edit

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Onwards

posted by Gilly Cannon, Friday, January 20, 2012, 3:15 PM

Dear Family and Friends,

My lovely cousin Janice and Ian, her husband of 11 days were on their honeymoon on the ill -fated Costa Concordia cruise ship, when it hit a rock last Friday. Thank G-D they are both fine and have spent their time since their rescue reuniting with their families and being interviewed by various news media, including a stint on the BBC.

http://www.bbc.co.uk/news/uk-england-london-165869 55

Ian describes how, in the dark they had to use a rope to find their way down the outside of the listing ship. I cannot imagine how frightening that must have been or what flashed through their minds during that 6 hour period. During that time, adrenaline kicks in and the brain and body move into survival mode without processing too much. But in the weeks and months ahead they will face the challenges of coming to terms with their experience, thinking about all the “what ifs” and recovering from a very traumatic ordeal. Our love, thoughts and prayers will be with them as they do.

During a medical or life threatening crisis, putting one step in front of the other is all that you can do, indeed what you must do to ensure that you and your loved ones’ chances of a successful recovery are as great as possible. As the imminent danger recedes the opportunity to replay the scenario and ask the “what if questions” become more dominant. The time and direction that this process takes seems to be unique to each person and situation, but I am learning that it is, nevertheless important for full recovery. One thing Jonny and I have certainly done since our crisis has receded, is to take stock of what is important to us and to reflect on the small daily things in life that bring us joy.

We have learned that we like being together 24/7 (lucky really); that a beautiful sunrise never ceases to give us pleasure; that PBS has excellent shows from British television (Sherlock, Downtown Abbey, and Place of Execution); that constant, long- lasting friendship is priceless; And that for everything else, there is MasterCard.

As Jonny regains his strength and stamina, managing his and others’ expectations of what he can accomplish day to day, week to week, mentally and physically, has become more important. As one of my very wise friends told me, “Remember that as far as you swim out, you must also swim back.” This is such an intangible challenge. How far do you push yourself so that you accomplish more each day, while not overdoing it? There is no guide book for this piece of recovery (or any other piece actually). Only being finely- tuned to your body’s cues gives you parameters and then of course you have to listen to and act on them!

Jonny’s most important milestone this week was having a full day without taking any Tegratol at all. (The drug he has been on since the emergence of his trigeminal neuralgia 3 ½ years ago.)His body finally has a chance to function again without the side effects and his love -hate relationship with this drug has, hopefully, come to an end.

My updates are also coming to an end. Thanks to all of you, we have weathered the worst of this storm and Jonny is starting to get out and about; he is going to School next week to see Jacob in a play, and is beginning his re-entry to work. When I started writing to you all, I had no idea, I would still be communicating with you three months later. Thank you for caring enough to join the listserv and read my notes, for your thoughtful, generous, encouraging emails and feedback and for staying in touch through this tough period. Even if I didn’t respond to every text or email, I hope you know that each time we read your messages, you helped us feel less alone and sent loving, warmth surging to our hearts. We look forward to seeing you all soon and sharing happy occasions as well as supporting one another through the tougher times. As I have mentioned before, one of the blessings to have come out of the last few months has been the opportunity to be in more regular touch with family and our friends from all the different parts of our lives... Please keep those emails coming. We promise to reply!

With much love and gratitude

Shabbat shalom

Gilly and Jonny Edit

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Warming Up

posted by Gilly Cannon, Tuesday, January 3, 2012, 6:45 PM

Dear Family and Friends,

Jonny and I are at the beach. It is a cloudless day and we are sitting side by side in low slung beach chairs. We have some shade from an oversized umbrella and our feet are partially buried in the white, clean sand. The sun is bathing us in its warmth and we are watching the waves tumble onto the shore as the Sandpipers hop away from the foamy puddles just in time.

……..OK. We are not really on vacation; it is 28F (-2C) degrees and feels like 18F (-8C) in Washington. But we have visited the beach in our imaginations a number of times over the last few weeks! And for the first time in four months we have begun to think further ahead than a few days. Jonny is hunting online for a beach house to stay in, for a week or two during the summer and we are dreaming often about those waves. That is progress don't you think?

Best of all, Jonny has not had pain for over a week. The anti-viral medication seems to have worked some magic. Jonny has restarted the climb down off his meds at a slow but consistent rate with some side effects, but no pain. The five of us have had a great staycation, watching movies, Jacob’s magic tricks and Benjy’s new college and old school friends trickle in and out the house. We have laughed a lot, eaten steak (ok not Jacob) and ventured as far as friends in Olney with Jonny driving. (That knocked him out!)

So, the outlook is sunnier than it has been for a while and three days into 2012 we are beginning to see light at the end of the tunnel.

Wishing you warm and sunny days

Love

Gilly Edit

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Anniversaries

posted by Gilly Cannon, Tuesday, December 27, 2011, 12:15 PM

Dear Family and Friends,

Tomorrow (Dec 28th) is our twenty second wedding anniversary. Twenty two years ago, our wedding reception was on 6th night Chanukah and those of you who were there may be wondering if the band has finally finished playing their excruciatingly slow rendition of Maoz tzur. My mother and father were thrilled I was marrying Jonny. Having only daughters, my Dad had at last, found someone who might be able to watch football (soccer) with him on TV, while he listened to the highlights of a cricket match at the same time, through an earpiece on his radio. However when the wedding celebrations ended that night he did say to me, “Ok, you’ve had your fun. It’s time to come home now.” I tell you these stories about my Dad, because he died 13 years ago at the age of 59 and this year, his yartzeit ( the Hebrew date that marks his death) falls this Shabbat (Dec 31st). While we were sitting shivah for him, Jonny and I celebrated our anniversary and my sister celebrated her birthday (Dec 29th). We were surrounded by family and many, many friends and because we were all mourning the loss of my father, there was something tremendously warm and comforting about marking our wedding and Anna’s birthday during shiva. In this bubble, time stood still and memories of my Dad comforted us.

That cocoon was very difficult to leave when shiva was over, particularly because I wasn’t just leaving the familiarity of my parents’ home and the outpouring of love and amusing, amazing stories about my father, but I was leaving the UK to go back to Hong Kong where we had been living for 2 years. There, time had not stopped and memories of my father were in short supply.

Jonny has been wrapped in a cocoon in our home since leaving hospital six weeks ago. He too has been enveloped in love, tender care, thoughtfulness and generosity. But it has been a measured, gentle environment-with one or two people at a time and an easy retreat to bed whenever necessary.

This week he stepped gingerly out of the cocoon into the unpredictable outside world. He found that although he could not fly, he could walk! We took a stroll to friends close by on Shabbat and stayed for a little while, to celebrate a birthday. We went out to a movie with 2 close friends surrounding us like armour (armor) and Jonny coped with the crowds and noise –although it was perfect that we saw “The Artist” –which is a silent movie! And we went to friends to celebrate 6th night Chanukah: – by planting all 6 kids in the dining room and the 4 of us in the kitchen, Jonny was able to enjoy his first dinner out and he drove us home. There is a price for all this gallivanting. Exhaustion and pain still remind Jonny that he has a way to go to full recovery. However the anti-viral medication is definitely making an impact (thank goodness) and we all agree, (Jonny included) that it was worth the trepidation of tiptoeing out of the cocoon.

Each new stage of recovery requires you to tread tentatively out of your comfort zone. It is anxiety provoking but ultimately healing.Thank you dear family and friends, for walking with us.

Daddy – we miss you.

Happy Birthday to Anna-Happy Anniversary to us-Happy Chanukah /Christmas to you all.

And a very, very Healthy 2012 to Jonny and Everyone we know.

Lots of love

GIlly Edit

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Revisiting Hopkins

posted by Gilly Cannon, Tuesday, December 20, 2011, 5:45 PM

Dear Family and Friends,

Yesterday morning (Monday), we had Jonny’s follow up appointment at Johns Hopkins. The day before, as part of his EMT training, Aron had spent all day, on a course, learning how to respond to emergencies involving hazardous materials (HAZMAT). He had to practice wearing an oxygen mask and other protective gear in HAZMAT situations. He was totally motivated by the experience. By contrast, he spent the evening until some ungodly hour Sunday night, treating his essay: - analyzing an American romantic poem, as a hazardous material. He alternated between avoiding it, prodding it and eventually writing it in the wee hours. So, as you can imagine getting up on Monday morning was rather difficult for him. Also, it was a typical Washington winter day; beautifully sunny with blue sky and dabs of marshmallow fluff clouds, but bitterly cold. This meant our cars needed deicing, adding even more of a time crunch to the morning routine. We needed to be at Hopkins by 10.00am and Hopkins is a good hour away (even with the new road!!)And, Jonny still finding early morning wake ups very difficult, needed to take things slowly –actually who doesn’t? I think you get the idea that it was not a very calm, serene start to the day …..

On the plus side I was thinking how great it was, that I knew my way to Baltimore, knew where to drop Jonny and park, and was feeling very pleased with myself (as I had done on many occasions) when a new town at last seemed familiar. It was only when the Valet parker at the hospital entrance recognized me and I attached the last of my 10 super saver stickers to my parking ticket, that it dawned on me that all this familiarity was because Jonny had spent 2 weeks in hospital at Johns Hopkins before and after brain surgery.

I remember when Jonny was first admitted to the neurological ward that it was difficult not to gawp at the other patients. They were tentatively taking their first post-surgical steps up and down the corridors with different versions of partially shaved heads and angry scars across their skulls and now here was Jonny walking into Hopkins with one of those aforementioned scars of his own.

We were back to meet with Dr. Carson the famous neurosurgeon and Carol James his physician’s assistant, who is really the power behind the throne. It is Carol who has guided us through both surgeries, worked with Jonny on increasing his medication before surgery and slowly reducing it after. It was Carol who was waiting to talk to me when I first saw Jonny in the ICU and who came to visit Jonny every day and did not leave until she had disentangled all the hiccups in Jonny’s care and it is Carol who has emailed back and forth with Jonny for the last 6 weeks. We have adopted her as family and she has literally held our hands, hugged us tight, listened and responded so professionally, clearly and non-defensively to every question, concern and query we have had and explained that Jonny’s journey with trigeminal neuralgia has been anything but typical.

Yesterday, in that vein, Carol talked to Jonny at length about the type, amount and level of pain he is still experiencing, about the acute response his body is having to small reductions in medication and about the variation in his level of hearing in his left ear. (This will continue for up to a year.) Dr. Carson confirmed that having located and removed the offending artery from Jonny’s trigeminal nerve, the chances of the MVD being successful in the long term are very good (yippee!!) In the shorter term we need to focus on reducing the remaining pain and the medication. Since the remaining pain maybe the result of a neuropathic virus exacerbating the delicately healing trigeminal nerve they have actually added an anti-viral medication to Jonny’s drug cocktail and temporarily halted the reduction in the TG medication. It is possible that this virus might be adding to Jonny’s continued exhaustion and be aggravating the side effects from his withdrawal from the other medication .Carol also gave Jonny’s scar a cursory glance. (I guess she’s seen scars like that once or twice before) and then gave us both a very warm hug.

And after all that- an hour and a half later- we dropped a “thank you” crate of cookies (biscuits) and English tea at the nurses’ station, and we walked out of Johns Hopkins, together into the beautiful day for, what we hope is, the very last time.

Wishing you and your families a very happy Chanukah.

Lots of love from Potomac.

Gilly Edit

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10 things we've learned about living with TN

posted by Gilly Cannon, Tuesday, December 13, 2011, 6:30 PM

Dear Family and Friends,

If you google trigeminal neuralgia (TN) you will find a plethora of information about the condition and its treatment. These pages talk about onset, symptoms, recurrence, pain control and treatments ranging from drug regimens to brain surgery. There are also studies you can access from as far afield as the US National Institutes of Health and Japan about the success rates of different surgeries. And as I am sure you can guess we have been avid readers. Just a few days before Jonny’s brain surgery, I discovered my Mum (mom), Benjy and Aron and a doctor friend, huddled around a laptop; on you tube watching a surgeon’s hands buffering the trigeminal nerve during a Micro vascular Decompression. We all became experts on diagnosing and treating TN.

Here are some things we learned from experience rather than from a virtual textbook or a TN website.

1. The gold standard drugs you are on to reduce TN pain, work perfectly, until they don’t. The non -invasive surgery you have had, is always successful (90-95% success rate) until it isn’t.
2. Before this first surgery you are sure you have felt the worst pain ever. After the surgery you realize they need to invent a new pain scale.
3. After brain surgery you will feel as though you have been hit by a truck. (Well they told us that before surgery and we nodded sagely at the time.) After surgery you wonder, does this feel like being hit by a truck? I’ve never been hit by one so how can I compare?
4. Not all headaches are the same..After brain surgery you will have a massive headache (they warned us) but rarely, this headache is actually not the kind they meant and it takes 3 days before a staff member actually stops and says “tell me about your head pain.” And then realizes that what you are actually suffering from is a low pressure headache. This is best treated with caffeine (see I told you tea was the answer to everything) and ibuprofen, not another massive dose of narcotics.
5. 48 hours after surgery, following protocol, the Hospital is desperate to discharge you so you don’t catch an infection and your spouse is desperate to keep you in. She is left to point out that your illness has not followed protocol, so why should your recovery be any different . (I learned that following your gut might be all you have to go on, but it is worth listening to.)
6. You receive invoices from the hospital with numbers that seem similar to the national debt!
7. You will be separately billed by 4 radiologists, 3 anesthesiologists, 2 surgeons and a hospital. ( I feel a Christmas song coming on)
8. The patient suffers tremendously from this horrible condition, but his family and friends are affected too. They sit with you for hours through the pain, they cook and care for your children, they schlepp back and forth from Hopkins and they actually read your posts!
9. There are silver linings to this terrible ordeal. Friends, some of whom you may not have spoken to in years but have known you since childhood and live far away, call and write to you , reminisce about school antics, tell you news about their children getting married/having babies and by their acts of kindness,give you strength to face these challenges.
10. Recovery takes some unexpected twists and turns but as far as we can tell (no guarantees yet), Jonny’s MVD does seem to have worked!

Love to you all

Gilly Edit

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How time flies when you are having fun.

posted by Gilly Cannon, Tuesday, December 6, 2011, 5:00 PM

Dear Family and Friends,

Today is both the day Jonny originally had as his date for surgery and marks exactly four weeks since his surgery took place. As the surgeons said -You need to look at progress in terms of weeks rather than days.I think that was good advice.

As far as recovery from surgery goes he has made great progress. His hair has started to grow over his wound and he is beginning to manufacture alternative accounts for how he came by such a magnificent scar. Everyone who visits is pleasantly suprised to see how well he looks. In fact we are thinking he may look too well and we will have to work on some special effects to exact more sympathy.

Jonny had a very busy weekend. The CESJDS high school A Capella choir paid us a surprise visit at 9.00 pm. on Friday night.The choir was having an informal shabbaton in our area and Jonny had hoped he would feel strong enough to walk to see them after dinner-But he soon came to his senses and realized the whole adventure would be too much for him. When the students realized Jonny would not make it to where they were eating, over 20 of them (14-18 year olds) walked over to our house, poured into our dining room and proceeded to fill our home and lift our spirits with their harmony, laughter and warm wishes. There are few words to describe how touched we were by their gifts of time,thoughtfulness and song. Suffice to say, I cried, Jonny beamed,Aron is still recovering, and Jacob looked on in awe. and the students gracefully ignored our emotions and the fact that their Headmaster and his family had watched their entire performance in their pajamas!

On Shabbat we had the best kind of guests for lunch. They brought the whole meal with them and cleaned up afterwards,and Jonny was able to stay for a large part of the feast. On Sunday morning he cooked for the first time, making chocolate chip pancakes for Jacob. In the afternoon we ventured out to a more distant Starbucks than usual and took a little walk with our drinks in hand. Yesterday and today, he has paid dearly for his cavorting and has felt pretty rotten a lot of the time, spending most of it sleeping. But he tells me his "packed" schedule was worth a couple of downhill days.

Jonny is still having some facial pain and headaches. They are no worse, as the TN medication is being tapered, but they are no better either. The medical team at Johns Hopkins is being very cautious about reducing the medicine further and so Jonny continues to suffer from its side effects. However he is certainly awake much more of the time, able to read. watch a movie and reflect on the experience he has been through with greater clarity and concern. As the hospital bills have started to roll in he is beginning to analyse the roller-coaster ride and the new meaning a hospital gives to the charges for two weeks "room and board."We are thinking it certainly was not a vacation in Paris!

The good news is,if Jonny continues on this trajectory, four weeks from now he could be well on the way to complete recovery.

Love to you all and thank you for keeping in touch

Gilly Edit

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Happy Birthday Jacob and a note of appreciation for my GPS

posted by Gilly Cannon, Friday, December 2, 2011, 4:00 PM

Many of you from Hong Kong will remember when Jacob was born. We can mark our time in the States by his age. We arrived here when he was 8 months old and now in our 11th year, he is celebrating his 11th birthday today. We have a tradition of birthdays in our home, where the gifts and cards are set out on the kitchen table late the night before and the first thing that we all do in the morning is to gather round and the birthday boy ( and once a year the birthday girl) opens his or her cards and gifts. Jonny made sure Jacob’s birthday was about Jacob. Even though he felt ill through the night he dragged himself up at 6.30am to make sure he was awake for present and card opening . He dutifully put batteries in a new toy, enjoyed Jacob’s reading of every single word of every single card he received and got pleasure from watching our 11 year old appreciate all the goodies that came his way. As Jonny pointed out, it was the least he could do for Jacob who is always so sweet and kind to others and has taken such good care of him throughout his illness.

As I reflect on these 11 years in the USA, I can tell you that it has certainly been an adventure. I could list all the challenges we have faced and there have been many. It is easy to focus on the tough stuff and forget the good things. Yesterday, I was thinking about how small our world has shrunk since Jonny’s Trigemimal Neuralgia returned. We have not ventured far from our house on Titian Way, except to go to Hopkins, for months and sometimes it feels like forever. As I was wallowing a little in these thoughts, I was also searching for an address in my GPS and as I scrolled through, the most amazing thing happened. Before my eyes rolled the last 90 addresses that we have needed directions for. As I glanced through them, destinations including Universal Studios in Florida and all kinds of stops we visited on our long drive to and from Harry Potter World caught my attention. Norman Rockwell’s house in The Berkshires and The Kennedy Center rolled passed, along with addresses to friends, charity and school events, Benjy’s graduation, different airport arrivals and numerous other memorable visits. Each address brought back a joyful memory and a reminder that this year has not just been about trigeminal neuralgia…….so next time you think you have just been going in circles around the 495 in Washington or the North Circular in London or The Peak in Hong Kong or The Ayalon in Israel, just take a look at the destinations your GPS has taken you and you might be pleasantly surprised.

Shabbat shalom and happy birthday Jacob!

Lots of love

Gilly Edit

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Navigating a Labyrinth

posted by Gilly Cannon, Tuesday, November 29, 2011, 5:00 PM

Dear Family and Friends,

A few weeks before Jonny’s first procedure I was lucky enough to walk a labyrinth with a wonderful guide. A labyrinth is different from a maze in both design and purpose. Unlike a maze a labyrinth is not designed for entertainment. It has only one way in and out. It has no high walls or dead ends and can take different forms, but always has a center from which you can see where you have come from and where you are going.

Taking a walk into a labyrinth and out again is like a meditation on the move. You put one foot in front of another, following a path that winds back and forth close to the center and out again. You let your mind relax and your thoughts pass freely through your consciousness, until you find yourself right in the heart of your journey. At this point you take time to contemplate your route and your insights before making your way out again. The way out is no more straight forward than the way in. The path bends and turns. Sometimes you find yourself in the outer rim and think you have nearly reached the end and then just as quickly you seem to be winding back to the center, feeling that perhaps you have made little progress at all. As I have been searching for an analogy for Jonny’s recovery it occurred to me that his path to healing is very much like the path out of a labyrinth.

So where is Jonny on his own unique labyrinthine journey? ( I think I may have made this form of the word up!)

Well just as the point at which you find yourself at any stage, as you walk out from the center of a labyrinth changes, so Jonny’s recovery seems to change. Jonny has better and worse times. Days when the tiredness is all engulfing, his head throbs, his left ear feels water logged and he has some nerve pain and days like today when he was able to take a ride in the car to Whole Foods and have a coffee ( yes I meant coffee) with his parents and have a visitor or two all without any pain, before needing a nap. And what we know for sure is just as you know that you will reach the end of the labyrinth, we know he is moving in the right direction away from surgery towards recovery.

Interestingly (well to me at least) many hospitals, including Johns Hopkins, have labyrinths. The information on the Hopkins labyrinth webpage explains:-

“Entering the labyrinth and moving to the center is seen as a letting go or releasing of apprehensions and daily stress. The center is a place to pause, reflect and receive insight. Moving out is a time for action and renewal.”

At many levels I think a labyrinth speaks to the journey patients and their loved ones take at the onset of an illness, through treatment and recovery. The path is anything but straight -there are ups and downs, good and bad periods, days when progress seems great and days when full recovery seems very far away. This is also a story of recovery that anyone who has had a loss might take.

A labyrinth’s symmetry appeals to my mathematical mind, its path appeals to my heart and its spirituality to my soul. I think it represents journeys we have all taken that are complicated, challenging and unpredictable and gives comfort that just as we find ourselves caught in a problem there is hope for a way out.

Gilly Edit

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From Jonathan ( aka. Jonny)

posted by Gilly Cannon, Sunday, November 27, 2011, 10:30 AM

I thought that I would celebrate the fact that I am able to read and write more than one line at a time by sending you this update myself. I know that you prefer it when Gilly writes (and to be honest, so do I ). I can assure you that she will be back soon.

I am getting better from the surgery each day. The pain of the procedure is lessening according to plan. The exhaustion remains.  When we discussed surgery with the medical team, they told me that I would be tired for several weeks and they were right. It is difficult to believe that a small task ( writing this email, climbing up and down stairs, having a visit) can leave me needing a couple of hours sleep but I know that it will continue to improve over the coming weeks.

That leaves the question as to whether or not the operation was successful. We would all like to know that ( myself and Gilly included). It takes some weeks for this assessment to be made and we haven't had the follow up visit to Johns Hopkins yet. There is good reason to be " cautiously optimistic" as the medical expression goes and we will let you know more when we know. 

What is 100% certain is how appreciative we are of all that you have done. The meals and bagel runs,  the phone calls and texts, the cards and emails and all the ways you have been in touch and expressed support. We thank our parents who have travelled to be with us and help out. We thank our three sons who have been so caring, so supportive, so mature and so loving ( as they always are). Most of all I want to give a public thank you to someone who I thank G-D for every day, privately and that's Gilly. She has held my hand literally and figuratively every step of the way.  She has felt my pain and been there to help me cope with it, fight it and ultimately, overcome it. She is my partner, she has advocated for me, helped with my every need (even when she needed something) and dedicated herself to my mental and physical recuperation.  I know that none of this will suprise you as you know Gilly but I also know how thankful I am that she is my wife, partner and best friend.

Enjoy the last day of this Thanksgiving holiday weekend

Jonny ( aka. Jonathan) Edit

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Happy Thanksgiving

posted by Gilly Cannon, Thursday, November 24, 2011, 9:15 AM

Dear Family and Friends,

Our first Thanksgiving meal experience was in Hong Kong, sixteen years ago, when we were allowed, as the only Brits to join a truly Hong Kong American celebration. During those years we learned to make turkeys out of socks, sing songs about the challenge of finding a kosher turkey when the only kosher store in HK did not have one and discovered that football does not always involve kicking a ball around a pitch with your feet. We were very grateful then to be included in this all American celebration and we are very grateful now that so many of our Hong Kong "family" who are living all around the world, have been in touch with us so regularly, over this rough period.

As British as you may think we are,we hope we are American enough to thank you ALL profusely for your wonderful friendship and support through Jonny's illness,surgery and recovery. We hope you know that your unending care,thoughtfulness and kindness to us and our family will resonate with us for ever.

Wishing you and your loved ones a very happy and healthy Thanksgiving and Shabbat shalom.

Gilly,Jonny,Benjy, Aron and Jacob Edit

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The Benefits of Brain Surgery

posted by Gilly Cannon, Tuesday, November 22, 2011, 8:30 AM

Dear Family and Friends,

I know you are all eager to hear how Jonny is doing, but first I want to mention all the other “normal” things going on in our house. Since last Thursday we have had a broken washing machine, everyone needed haircuts urgently and Jacob came down with a very sore throat. It was quite a relief to be making mundane calls to Sears, the hairdresser and Jacob’s doctor -the difference? - whenever I mentioned that my husband had just had brain surgery, it was like a free pass to the front of the line at Disney World. Sears shipped out a part for the washer overnight. My wonderful mensch hairdresser Ofeer (who owns Zohra) came to our house and made Jonny and I both look human and Jacob’s doctor’s office offered me any time slot I could make yesterday. Who knew brain surgery could have such benefits?…….I guess people don’t use that excuse too often.

And Jonny? Well he is making great progress. He no longer has low pressure headaches. He has a very nice hair cut which the surgeons had started and Ofeer finished. He has been able to read for small chunks of time. He collected the mail from the mail box and he made me a cup of tea. That was the sweetest cup I have drunk in a very long time and I do not mean because of the sugar. He is taking short walks round and round our court and most of the time does not feel too dizzy if he walks slowly. He has been able to see a few people one at a time for five minute visits and although he feels incredibly tired he is awake for much more of the day. If you would like to visit, please send me an email and we can set up a time.

As for the pain itself..that is a little more complicated. The post op pain has diminished to soreness. He now feels he’s been hit by a bicycle instead of a bus. He is still having some facial pain. This is not nearly as intense as before but has slowed tapering off of the medication he was on for TN while the cause is established. The docs want to eliminate possibilities other than TN ..so we are off to the dentist and then we will see.

When your life slows down to a crawl you have time to appreciate the mundane. Oh the benefits of brain surgery!

Love

Gilly Edit

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smile

posted by Gilly Cannon, Friday, November 18, 2011, 7:30 AM

Dear Family and Friends,

As you may have gathered by now I love the sunlight. The sun breaking through the trees or streaking through the sky as it sets, always makes me smile ( probably because it was quite a rare occurence in England). So when I woke up this morning to a crisp, sunny day it felt rejuvenating and hopeful.

Yesterday, Benjy surprised us with a beautiful and moving email message. He titled it "Smile" and part of it described his fear at what he would see when he entered Jonny's hospital room in Hopkins for the first time, before he had surgery. benjybgoes on to describe how all his fears dissipated, when Jonny, through his pain and drug induced sleepiness, gave him his classic warm, large smile. Even then Jonny was able to make others feel at ease, with a simple change of expression.

And now, his smile is so much bigger. It is what those who have seen him, comment on most. He has his smile back, allbeit through his Taliban beard. And that glint in his eye, as you watch him form some hilarious comment in his mind, about a simple act of daily living, is present again.

Serious illness and surgery, certainly makes you reflect on the very simple things that you have taken for granted before and it means your mail is much more interesting and uplifting to open. Amongst the bills, adverts for Macy's sale and my sister's latest purchase on ebay( actually opening Anna's parcels, is always fun), have been cards and letters filled with well wishes. When receiving a hand written/drawn/made note is such a rarity, each of these is a special gift. For these and for all your wonderful phone and email messages of love,hope and humor, we thank you for making us smile.

Shabbat shalom and love to you where ever you are.

Gilly Edit

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Two steps forward one step back

posted by Gilly Cannon, Wednesday, November 16, 2011, 5:15 PM

Dear Family and Friends,

The doctors warned us that recovery from brain surgery, does not follow a straight path. Some days are easier than others and doing too much will often lead to a slow day following. In the two steps forward one step back dance, we have hit the one step back. The last 36 hours have been very challenging due to post op head pain and emotion. The reality of the last three months has begun to take its toll and the distance still to be travelled seems long and arduous. For someone used to making hundreds of decisions a day it is tough to feel reduced to finding accomplishment in showering with help or getting up and down stairs without needing a sleep to recover. Whilst we are all cheering at the small steps to success, Jonny is wondering how he came to this point.......

But perhaps the fact that he can even begin to question what an ordeal he has been through, is progress. Until now,he has been in too much pain, on too many medications on ultra high doses and too caught up in immediate post operative side effects, to be able to contemplate anything else.Now as the fog is beginning to clear, his clarity is returning and with that the brutal reality of his roller coaster ride has come into sharp focus.So working through the emotions that are bound to surface is a good, necessary and an important phase of healing. I am sure that any of you who have been with us through this whole ordeal are wondering how it took this long for the shock to hit, how Jonny managed to stay so positive, upbeat and in good humor through so much pain and distress. But you also know that because of his attitude to life,ability to look at the big picture and his ability to self reflect, this is just a small step back before he begins to take another two steps forward again.

Roll on tomorrow!!

lots of love

Gilly Edit

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celebrating the small and big milestones

posted by Gilly Cannon, Monday, November 14, 2011, 11:15 AM

Dear family and friends,

I have often thought about how it is in one's nature to respond to the tough things. When something bad or tragic happens we stop everything and run to help, not thinking about whether we have a choice, and thank goodness we do! However, when it comes to celebrating that is something we can choose to respond to or not. Choosing to celebrate is harder as you have to find time in the schedule to put in the effort, to decide to take the time to plan and then to follow through.

So with that in mind we have 2 things to celebrate and I am going to take the time to tell you about them.

This morning Aron passed his driving test. We schlepped to Largo -( no I didn't,know where that was either),at 7.15 am to avoid the traffic and I wondered how I could leave Jonny for the first time in 8 days. I paced back and forth, peeking around the corner to check Aron was still the one driving after each maneuver ( if the examiner takes over -he has failed) and asking silently for something to be straightforward in our lives. As he came back still in the driver's seat some 20 minutes later,smiling it began to dawn on me that he would consider this his biggest milestone so far and in amongst his father having brain surgery, his twice weekly EMT classes and frequent exams( to be an emergency medical technician on an ambulance) and junior year, he has managed to pass this test and we MUST celebrate. He celebrated immediately by taking my car to school and I am going out to buy balloons and his favorite cookies because I can.

Jonny's progress is also something to celebrate. Even though the steps are small, each day brings a little more healing.He was able to sit up in bed alone today.He is learning to manage his pressure headaches. He slept most of the night relatively peacefully. He was able to read some emails and he spoke to Aron on the phone when he called him to tell him he had passed his driving test.He had his first trip out today -( ok it was to a doctor and he is still recovering several hours later but a trip is a trip right?!). I know he will celebrate this trip as a milestone and the beautiful trees and the sunshine and the fact that he can walk to the car and I will celebrate this too. Not sure if he gets a balloon and cookies though!

Love to you all and looking forward to celebrating many happy milestones big and small,with you.

GIlly Edit

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Home Sweet Home

posted by Gilly Cannon, Saturday, November 12, 2011, 6:45 PM

Dear Family and Friends,

thank you for all your uplifting pre and post Shabbat messages. We are so happy to let you know that we came home this evening and Jonny's blood pressure has dropped dramatically just being in familiar surroundings.We are both exhausted.Hospital is certainly not a place to get any rest .We will fill you in with more details over the next few days and let you know when Jonny is up for visits.Surfice to say Jonny coped with the drive home really well and is very excited to be sleeping in his own bed. I'm pretty happy too!

This will certainly be a shavua tov - a good week. Wishing you all one as well.

Gilly Edit

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The English Patient ( thanks Jojo!)

posted by Gilly Cannon, Thursday, November 10, 2011, 12:00 PM

Dear Family and Friends ,

What a difference a few days make!

Jonny is 4 days post surgery and still at Johns Hopkins. The surgeons remain very optimistic about the surgery and are very pleased with his progress. He has begun to take some small but significant steps towards recovery which we know will take some time and is not a straight line. Managing the post operative pain is a challenge right now, however this will reduce with time and rest. Jonny will need to sleep alot over the next few weeks to keep his progress steady. Plans are being made for discharge and when we have more details we will let you know.

Thank you for the amazing outpouring of love and care. We have read each and every message you have sent by email,text,this site and hand written and greatly appreciate you taking the time to be in touch with us. I have been reading them to Jonny and you have brought a smile to his face.

I am looking forward to Jonny sleeping at home, as much for me as for him,since the recliner that I have slept on in his room has had a habit of making itself upright in the middle of the night with me in it! Talk about waking up disoriented!

Looking forward to moving forward.

Gilly Edit

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The joy of a cup of tea

posted by Gilly Cannon, Tuesday, November 8, 2011, 3:30 PM

Hello Everyone,

I am delighted to report that Jonny has had his first cup of tea back on the neuro ward.He came out of the ICU about an hour ago and looks more peaceful than he has for months.( I know it is not just from the tea.)

He is in quite a bit of new surgical pain -- this is to be expected for a week or so. Dr Carson told us today that

the nerve and the blood vessel were right on top of one another ("stuck together"), further explaining his severe TN pain and the reason the first surgery did not work. They separated and buffered the nerve and vessel from one another and are optimistic that the primary problem has been solved. Time will tell for sure.

Now Jonny has to concentrate on recovering from the invasive surgery and all that entails. At least we know this part has a known course and an end point. Thank G-d!

More updates to come soon.

Gilly Edit

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Out of surgery

posted by Gilly Cannon, Monday, November 7, 2011, 5:45 PM

Hi Everyone,

This is a quick note to let you know that Jonny is safely out of surgery and will spend the next 24 hours in the neurological ICU .The surgeons found a large artery pulsating on the trigeminal nerve which they have buffered to stop the nerve from feeling intense pain. We will know in the next 24 to 48 hours if the surgery has been successful. In the meantime he will feel as though he has been hit by a truck and has a terrible headache. The good news is that the meds will actually be able to control these pains.

Your support has been invaluable in getting us through. I promise to write again tomorrow.

lots of love

Gilly Edit

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Sunrise over Baltimore

posted by Gilly Cannon, Monday, November 7, 2011, 8:00 AM

Dear  Family and Friends, 

One of the (few) advantages of having to be in hospital here on the 8th floor of the Meyer building at Johns Hopkins is that each morning I get to see the most stunning skies and then the sunrise over Baltimore. Today was no exception. As the sky went from red to yellow and  we caught that moment when the whole sky was filled with bright light, it was possible to visualize the extraordinary love and warmth  that is enveloping us from our friends and family,as well as the care that seems to be the Hallmark of everyone working at the hospital. I don't doubt that if the success of the surgery is purely dependent on willpower,support  and prayer then mine has already succeeded.

However there is the small business of the actual surgery.As any of you who have had surgery know, there is no food or drink permitted from midnight the previous night and my surgery is now scheduled for mid afternoon.This means that not only am I unable to have my morning cup of tea,I won't have my tea at 4.00pm either.What I will be doing at 4.00 pm is once and for all putting an end to this horrific pain,which in one way or another has been part of my life for the last 3 years. I know you probably never expected an English person to be saying this but I think it's worth giving up a cup of tea (or two) to get this done.

I look forward to you hearing about the success of the surgery and enjoying a cup of  tea or something stronger with you very soon.

Jonny

Yonatan David Ben Zlata v Yitzchak Yosef  Edit

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14 hours and counting.....

posted by Gilly Cannon, Sunday, November 6, 2011, 8:00 PM

Dear family and friends from all around the world,

As we head into the final hours before surgery (and of course we gained an extra hour of waiting with the time change last night,) I cannot help but reflect on the remarkable goodness in people. There is no doubt that the last three weeks in particular have been incredibly challenging.Today Some of you witnessed Jonny's stoicism in the midst of the incredible stabbing pains, but you also witnessed his constant thoughtfulness,kindness,humor,intelligence and generosity that radiated between the dark episodes and fog of the medication. We in turn have been wrapped in love by all of you and you have made sure we know we are not alone.

To those of you far away who have made the effort to be in touch and make us laugh - you are very close in our hearts, and to those of you who are nearby and are nestling us in your warm embrace, we are hugging you back with love and thanks.

I cannot tell you I am not anxious about seeing my husband into brain surgery, but I know for sure, he has no choice if his quality of life is to be restored. So I am putting my faith and the love of my life, in the hands of his surgical team and G- d and praying along with all of you for a successful, complete healing of his body and soul. My Father's favorite psalm was psalm 121 Esay anai . He taught me to say it during the Yom Kippur war and I have found comfort in it ever since. If you want to say a prayer for Jonny, please find something that resonates with you. The power of your special prayers will surely be that much stronger.

Gillyxxxxxx Edit

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Shabbat shalom

posted by Gilly Cannon, Friday, November 4, 2011, 11:15 AM

Dear Family and Friends,

Nerve pain is a challenging opponent. Trigeminal nerve pain has an armory of weapons and is difficult to fight. it has unpredictability,suprise,increasing intensity and immunity to medication on its side. It shows no mercy,bombards for hours with electric,stabbing like pains and demands attention day and night. it tortures its victim for months and his loved ones who feel helpless and lacking any weapons with which to fight.

Just this morning at 5.15 am even though Jonny was loaded up on pain medication he was woken by a recurring headache that keeps visiting on the left half of his forehead - the same side as his neuralgia.It triggered his neuralgia and spiraled into uncontrollable,brutal pain and distress only coming under some degree of control as I write this post at 3.00pm.

So how do you mount a counter attack in the face of all this pain? ( All puns intended!) . Well an MVD with world class surgeons is certainly an impressive weapon, but all the months leading up to this the trigeminal neuralgia has been on a winning streak. How has the soldier and his family kept fighting? Well that's because of all of you - your love, concern,support, food,emails,calls and texts and willingness to do anything and I mean anything to help and listen to our ups and downs has given us the strength to get to this point.

Thank you for looking after us and our children, we couldn't get through this without you.

In this weeks parsha, Lech Lecha, Avraham famously begins a new journey, putting his trust in G- d to guide him. As Jonny enters this momentous week in his life, please can you say a prayer or spare a thought for a successful surgical outcome for him.

Shabbat shalom and all our love

Gilly Edit

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Next steps

posted by Gilly Cannon, Thursday, November 3, 2011, 12:00 PM

Dear Family and Friends all around the world,

Jonathan was admitted to Johns Hopkins Hospital in Baltimore Maryland ( about 45 minutes drive from our home) on Tuesday of this week where they have been working with us to manage his pain as best as possible. Because of this exceptionally intense pain the Neurosurgeon made the decision on Wednesday that Jonathan needs to remain hospitalized until the surgery can take place. In hospital they are able to manage the pain to a greater extent and Jonathan is more comfortable but getting less sleep than he was at home!

The trigeminal neuralgia neurosurgical team have been working very hard to find an earlier date for an MVD surgery( you can see our initial posting for more details about this surgery or go to the Johns Hopkins website). We are pleased to share with you that it will now take place next Monday morning November 7 /10 Cheshvan. We know that it's a serious surgery and that it has a significant recovery period but more importantly, we know that it has an extremely high success rate and that hopefully within a few weeks Jonathan will have recovered from the surgery and will be relieved of the Trigeminal Neuralgia.

The team ( Dr Carson and Dr Lim) who will be carrying out the operation is one of the most experienced in the world and together with your incredible support, friendship, humor and prayers, please G-D we will be able to look forward to many years of pain free health.

Shabbat shalom and love always

Gilly and Jonathan Edit

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Update

posted by Gilly Cannon, Tuesday, November 1, 2011, 3:45 PM

Thank you all so much for signing up to be part of this online community. We have an update for the the site more quickly than we could have imagined (or hoped). On Sunday and Monday, the pain continued to increase in frequency and intensity and on Monday night the team at Johns Hopkins made the decision with us that Jonathan should be hospitalized in order to bring his pain under control. We are writing this on Tuesday afternoon at the hospital with Jonathan receiving some much needed IV pain relief.  We are waiting to meet with the Neurosurgeons to discuss long term plans and will keep you posted.  

So many of you have asked how you can help. Humor has always been a way to help us through tough times so feel free to tell us a funny story or post an amusing link. We have just figured out how to get the wifi working in the hospital so we can read and post. Love to you all.

Gilly & Jonathan  Edit

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Jonathan Cannon

posted by Gilly Cannon, Sunday, October 30, 2011, 11:00 AM

Three years ago Jonathan was diagnosed with a condition called Trigeminal Neuralgia. At that time, over a period of four months, the symptoms were managed effectively with medication. This summer (2011) it returned with greater intensity and did not respond to medication. In early October Jonathan underwent a non -invasive surgery that was intended to relieve the symptoms for between 1 and 6 years.  The surgery was unsuccessful and following the surgery the condition has become exacerbated. Medication has increased and still Jonathan's symptoms are now more frequent, painful and debilitating. As a result he will be having an open skull (brain) surgery called an MVD in a few weeks. (See description below)

We would love to hear from you. Please feel free to leave us a message on this site. We will also post updates on Jonathans progress.

Thank you for all your support
Gilly and Jonathan


Taken from The Johns Hopkins Website

"Trigeminal Neuralgia is an extremely painful condition usually involving one side of the face. It usually occurs spontaneously. It has a characteristic feeling of “shock-like” pain which travels through the face in a matter of seconds, but can occur in a repetitive fashion. Sometimes it is triggered by specific things ,mostly it starts and stops for no reason and an episode can last from minutes to hours at any one time.
The intensity of the pain is exceptional, and it is felt to be more severe than experiencing a heart attack, passing a kidney stone, or even having a baby. There is no other pain quite like this.

Trigeminal neuralgia can be very active for a time, and then seem to disappear, sometimes for long periods, but always recurs later, often with more intensity. We also know that the most commonly accepted theory of what causes trigeminal neuralgia is vascular compression. There are blood vessels that travel with the nerve, and if they cause pressure on the nerve or irritate it, pain can occur.
Microvascular Decompression - This is the most permanent and curative procedure that exists today for treatment of trigeminal neuralgia. It is usually offered to patients who are in reasonably good health and are not too advanced in age (70 years is a usual cut-off age). This is invasive brain surgery, and takes about four hours in the operating room under general anesthesia."

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