Shopping in Sydney with a Trigeminal Neuralgia
Shopping in Sydney with the Suicidal disease
Who loves shopping?
I am feeling so lucky to travel so much, to visit so many beautiful places.
This week my Sweetheart and me traveled from Byron Bay to Sydney, Australia.
I posted a lot of photos on Instagram about beautiful boutique’s windows…from Prada
to Miu Miu, Christian Dior. I turned crazy in an old fashioned Australian hat boutique,
I was so curious in David Jones cosmetic department…. I enjoyed so much the little French pastry in the Rocks area. I have to precise, my sweetheart had a beautiful chocolate cake…I had water, since I am under some restricted diet for my health…but obviously that cake was really something…my Sweetheart was melting as fast as his chocolate cake…his eyes were sparkling like hundreds of stars…I enjoyed watching him having so much joy eating that chocolate cake (ooops, nothing like that at home…not even close…he is mainly following my diet usually)
We also walked to Darling Harbor for a wonderful diner. If you never visited Sydney, Darling Harbor is a beautiful place packed with restaurants and boutiques. A pedestrian bridge is crossing the marina, and a huge red lighted heart is hanging on the bridge….A nice and pleasant breeze is playing with our hair…caressing our faces….
Here is the start of a sad U turn in my fairy tale!!!
The breeze is a huge problem for me, as soon as it gets to my left face’s side. My life is turning as a painful nightmare. That is what I would name a triggering event to my trigeminalgia.
When the dentist failed, the physicians followed
As I explained in my post about fibromyalgia: more than one year ago, I had a failed dental procedure which crushed my trigeminal nerve. On top of that the dentist broke my jaw bone without saying it, left me with infections which required 6 more surgeries. My jaw bones and nerve were exposed in never healing wounds. This was certainly not a favorable healthy condition to repair the nerve.
I am the Victim of a Medical Scandal
Because I was living in New Caledonia (200.000 people, only 1 hospital…they all protect each other), this is a very small World, all the Doctors are budies and friends. During the week end they cruise on boats together, they trade a ride of private helicopter with a ride on a yacht, their kids are all in the same private school, they eat in the same restaurants…I know it…I was often invited….before…
But when I visited physicians and explain a doctor their peer’s-buddy’s malpractice…they suddenly turn blind, deaf and mute!!! They were in total deny and were misleading a diagnosis. For that reason, I received no treatment from any of them… I lost precious time…and had to leave New Caledonia to get the right treatment. Except for one neurologist, who took 2 minutes to listen to me…and to tell me he was seeing similar cases so often…and one anesthesist, who gave me medication which are usually not used in that purpose, he gave me an anti epileptic medication which wasn’t knocking me out too much…so fare this is the compromise I found to slow down gigantic pains. To these 2 doctors…hat down and thank you so much…you gave me hope
Reasearches have been done about traumatic trigeminal neuralgia
Famous Universities’ Professors specialized in jaw surgery are publishing reports about many cases reported…this is now turning to be more and more common with the frequency of implants procedures. What appears is that in case of damaged trigeminal nerve (the damage is felt during the procedure, even under anesthesia), it is crucial to re do the surgery to tempt resolving the mechanical crush or obstruction to the nerve.
So by adding the long term infection, the nerve has been highly irritated for a very long time, its natural coating also named myelin, has been damaged forever, letting me with nude skinned nerve.
This is now commonly found in British-English medical publications, but French Doctors are not willing to read in English…their believe is…anyway French are the best….so they stay in ignorance…and arrogance!!!
Why trigeminal neuralgia nickname is suicidal disease
The result of that nerve damaged is one of the worst painful conditions described by neurologists. This condition was called suicidal disease, it is leading some persons suffering from trigeminal neuralgia to commit suicide (some statistics are announcing 50%…which is probably not accurate any more, since we have strong medication knocking out the pain…as well as the patient).
The trigeminal nerve is the 5th pair of cranial nerve, in term of space occupied on the cortex (the surface of the brain analyzing situation), the trigeminal nerve occupies 50% of the cortex’s surface…that pain is really overwhelming.
Persons suffering from that chronic pain are describing different kind of pains. Mine is a mix of electric shocks crossing my head, burns on my half face, scalp, an ice pick stabbing my left eye and a permanent perforating pain locally in my jaw. Not particularly funny to deal with on a daily basis.
I intentionally and with some provocative intents, chose to talk about that pain as a suicidal pain…
I found some blogs claiming it is a scandal to talk about suicide intentions… these blogs are not curated by the patients but by the patient’s family..easy to talk about a pain you never experienced…
This will be a topic for another post
What is triggering neuralgia’s attacks:
It depends from one person to another some are triggered while brushing teeth or appying make up.
For me, any wind, breeze, shower, rain, even my hair tickling my face, any contact (my Sweetheart is becoming a champion in always choosing the right side of my face to lay a sweet kiss…always avoiding any contact with my left side). Smiling and laughing are winners too in my war against trigeminalgia. I am presenting the usual clinical signs of trigeminal neuralgia.
Can patients keep working when presenting trigeminal neuralgia
Each case is different, the degree of pain can be different too, but very often, medications are so strong, if you have a job with any responsability, from driving to taking care of a business, of persons…I believe it is quite impossible.
Personaly, I had to give up with all my former passions
I am so sad I had no other choice but to stop my practice (imagine a therapist crawling on the floor haunted by huge pains instead of treating yourself…this is definitely a no no situation for my patients). After more than a year, I still have patients calling me, referred by my own patients, hoping I could treat their back, joints, headaches pains…treat their wellbeing concerns.
I loved so much all what I was doing…I guess this helps to be effective in what I was doing…my practice was in New Caledonia and I had patients flying 6 hours from Tahiti to get my treatments…words of mouth…it is crushing my heart to know many patients are relying on me…and I am not present to help them.
My solution: Focusing on positive solutions:
This is why I decided to take a break from working and switched for shopping.
Not the kind of shopping in a Westfield mall or in a Barneys department store.
I am shopping for an excellent surgeon to take care of my neurologic chronic condition.
Since my first failed surgery, I already had 6 more.
I had a general jaw bone infection…explaining the surgeries…
It turned out I got many allergies (because of chronic infections my immune system is overwhelmed)
I understood, by many researches (you can have complete details by clicking here) why a chronic pain can possibly install and persist after a trauma. It is a physiological-chemical reaction in our body. That chemical reaction is linked to serotonin (in case of cranial nerves such as trigeminal nerve). Serotonin is the amino acid (protein-hormone) responsible for transporting the pain to the brain…and to the gut. Indeed, brain AND gut have the same neurotransmitter. Any other parts of the body use other amino acids.
This unbalance in my own body chemicals leads me to…major gut issues, directly linked to auto immune diseases. Even following a drastic diet, my extreme chronic pain maintains my gut condition. Each time I am experiencing a trigeminal neuralgia attack, I know it will be followed by gut issues. The strong inflammation reaction from this attack is provoking painful lymph nodes swelling and inflammations on the side of my neuralgia. I have to be carefully followed about that issue. I have been asked to proceed to a biopsy…I won’t
This dog running after his tail, just like my pain…this vicious circle…I decided to break it
Wednesday, I went to visit a surgeon specialized in jaw surgery in Sydney. He is also a Professor in Sydney University in his specialty.
I explained my case, presented all the medical tests and photos I had in my file, had another scanner done…
His words were: I am really catastrophied on what happened to you in your dentistry experience, from techniques used to bad follow up, everything was wrong. To recap, my case is complicated…he needs a collegial decision with his peers. He is not sure he can do something for me!
I have to say, I have a tough time to believe what happened to me….I am glad I kept all the tests, x rays, photos, reports….otherwise I wouldn’t believe it myself…
I am also glad my sweetheart has the strong desire to help me in any kind possible to treat and solve my health condition, since in France, dentists and any kind of doctors boards are extremely protected. It is almost impossible, even with all the evidences and reports, to get compensations for your medical treatments…I am not even talking about compensation for my “ruined” life and carreer.
I am used to think always positive…in this particular condition it is a powerful workout to find something…anything… positive.
After my failed surgery, I began to write 2 blogs: francesorganicbeautysecrets and frenchglutenfreegourmet
I also restart some studies: I am training and assessed for a Master in Aromatherapy…I should be finished by now…but lost so much time with my neuralgia and surgeries…I hope I will be done in a couple of months!!! So fare all my assessment have been graded 100/100… Challenge J: keeping that level…
Next week I will know what the surgeon decided, what kind of surgery…if any…
I am also tempted to try a specific laser treatment in the US
I tried many many things, from diet of course (which really helped for auto immune diseases), to nutrients, complements, capsaicin, ultrasound,
TENS: helped me for 5 or 6 months, now the crisis are too strong to be managed by TENS
Laser biostimulation,: no effect
Meditation truly helps me managing my pain attacks
Injections of local anesthetic: it helped me during a week.
Of course aromatherapy helped me to manage the importance of infections by local applications, and now, by olfactotherapy it is helping me to manage very bad emotions and anger.
Trigeminal neuralgia is the hardship of my life.
For that reason I will write more and more about that topic. By spreading infos, I hope it will bring more and more awareness on that health issue.
Former statistics are talking about 1/100.000 person, but these numbers are increasing drastically with the augmentation of implants procedures. Not all the dentists are very well trained to practice implants procedures, or they are not trained in case of any complications.
The King London College of Dentistry specialist is now announcing numbers such as 1/100 patient suffering from trigeminal neuralgia after implant surgery. Only dentist reacting very fast can stop the process of chronic pain. It is that simple: the dentist has to admit something went wrong, he has to react fast, in the 24 hours following the procedure…and this will be the end of your pain…back to a normal life. For more info on that topic click here
By offering awareness, by spreading the words, you can maybe avoid one of your family member to suffer for a lifetime, one of your friend, one of your facebook contact….networking…
You can find a longer description about trigeminal neuralgia by following this link: http://www.cedars-sinai.edu/Patients/Health-Conditions/Trigeminal-Neuralgia.aspx…
So please, if you care, don’t hesitate…share
Don’t hesitate if you have any questions regarding the techniques and material, potential allergies to the material used. I collected a lot of scientific informations regarding this terrible chronic pain as well as the traumatic causes.
Don’t stay isolated…let’s talk about it.
Take a good care of yourself, nobody will do it better than you will!!!