Well, a bit of a direction change for me medically - I'm adding descriptions and pics to help understand this - for me too - I have become a science project , well since 2010 with Hashimotos As you know I went to see a Neurosurgeon on the 16th June regarding my Bi-lateral Atypical Trigeminal Neuralgia , on the other side of Denver (3hrs each way) I was expecting quick talk, go over the MRI's and book the date for the Radio Frequency Ablation or the Gamma Knife of both TN nerves. But nope! well there will be kinda-sorta but have to do a few more things first just to make sure . 4 things in fact. All to do with SPG - not Vyvyan's hamster (if you've ever watched the Young Ones - BBC comedy from the 80's - then you'll know that reference)
SPG & Francis 2009 Halloween as Vyvyan with SPG Ok, serious head on again
SPG - is SphenoPalatine Ganglion Neuralgia - it has similar symptoms as Trigeminal Neuralgia. The SPG is in the cheek
SPG - A distinctive syndrome of headaches, better known today as cluster headache. There are two main clinical patterns of cluster headache -- the episodic and the chronic: Episodic:
I am chronic as I am Bi-Lateral Atypical - I have to be special somehow right!
So to make sure the correct nerve is ablated. I need to have 4 injections into my cheek. The SphenoPalatine Ganglion, this is a nerve block. "It is a short, simple procedure numbs the SPG, a group of nerve cells inside and behind your nose. The FDA has approved three devices for doing this. This nerve block works because your SPG is linked to your Trigeminal nerve, which is involved in these headaches and facial pain". So I am awaiting a call back from the Dr who will perform these nerve blocks before deciding on anything else. They had to be done one at a time and I will have them done every fortnight and Alan will come home for each. My left side will be first. Sadly they can only be preformed in Denver, I will be under General Anesthetic each time. So layover each night as I will not be allowed to drive
Oh and a new thing I am doing regular sugar readings too as i went for a vision test in may - got my glasses.. had a test for Glaucoma and i couldn't read with the new glasses on at all. he asked if I had changed my diet - so i have - I had another vision test last week after 2 weeks monitoring and new lenses are being done again - what a nightmare day that was as I have glaucoma and also the beginnings of cataracts aswell
I am currently on Low FodMap and comparing to my Insulin Resistance - this is to help the IBS-C ( (which has been caused by scar tissue enveloping my intestines ) and can only have Insoluble fiber only , So I have to check everything now , literally - for Low FodMap and what kind of fiber it contains- so far this is working and after 4 weeks I had lost 10lbs too - so finally a YAY moment with all of all this
I will update this blog each time so I'm not all over the place and scatty <3
Now going to upload pics as it was Alan's birthday yesterday!
Update 22nd June 2020
Alan returned to Dubois today and will be back on 6th July
My first SPG Ganglion Block for the Left hand side cheek is 12th July in Littleton and the 2nd is 24th July
Updated June 25th 2020
Alan and Francis will be home 3-12th July an Alan will take me to the procedure on the 10th instead of me dealing with taxis and hotels - they'll be doing some wood collecting and cutting in those days too . It will be great having them both here - i better get stocked up on food!
Updated July 11th 2020
SPG procedure #1 - 10th July 2020:
All went ok , the IV, the surgeon decided to do both sides, he saw no point in doing 4 one at a time and 4 trips for me to go to Denver.
It was after the procedure was when it all went wrong. When I was waken after the anesthetic, I woke in extreme piercing pain all around my left cheek and face, screaming and crying fighting to get to my cheek, pulling my mask off to relieve some pain, instantly followed by people scrabbling at my hands trying to put my mask back on, causing more fear and pain for me. Covid was more important than my welfare obviously The surgeon rushed over to me, extremely concerned, someone got me an ice pack but still the pain would not subside. trying to calm me and ask as many questions as he could about what was happening while consoling me, he came to me several times before I was discharged, he was genuinely concerned, the reaction that was happening and the amount of pain I was suffering. He agreed that the TN procedure should have been done not an SPG.
The pre and post care was friendly and warm but Covid mania was first
Alan was not with me and not allowed inside at all with a mask on. He was told to wait in the parking lot, for four hours in 101f heat in a vehicle, this was not going to happen, it is cruel and inhumane to ask anyone to do that
I have just drafted a letter to all 3 neurosurgeons - not impressed and I'm definitely not in a happy place!
But Alan did go see Paddington , hang out and they went to a vinyl store - and I got spoilt with some "you survived hospital again" pressies! :) Yay me which arereally helping as over the weekend I have gotten worse with the facial pain and my left upper jaw is starting to hurt and ache . Great! The boys leave tomorrow so hopefully today will be better, as I hate being like this when he goes, as it adds more worry/stress for him.
Sunday 12th
Light at the end of the tunnel - after reading the small print , this could be the side effects that they list
Alan atm, is staying behind and Jay will return to Idaho . Shall see what tomorrow brings and how I am before he thinks it is okay to leave me alone
after a nap at midday, throughout the afternoon I am starting to feel better , the nausea, sickness is starting to ebb away and not as severe as earlier! So fingers crossed
thank-you to everyone so far contacting me to check on me too - means alot <3
Sunday 19th
The week was quite a challenge and not just for me. Alan has been doing non stop research and finding whatever medical papers he could on how to deal with this specific problem, as needless to say, I have heard zilch from all 3 neuros. no matter hw many calls, voicemails, messages I have left after I know they had seen the letter. I main surgeon - nothing whatsoever - not even to see how I am. Arrogant egostistical A-hole So I have emailed my original Neurologistic in FoCo for a phone consult to find out WTH is happening and how and who is going to help me . But any surgeries now I will delay till after August 15th . I am not letting these pilloks destroy my first ever time of having our granddaughter here on her own for for weeks Also, I am off all TN medication due to the side effects - extreme memory loss, cognitive skills of holding even a basic conversation, memory loss, urinary retention and increased IBS-C problems. Also the painkiller codeine - again IBS-C problems and not working anyway Alan got to researching as he was seeing how much I am suffering , has read many research papers and one thing did appear to be of some benefit and work for patients with Bilateral Atypical Trigeminal Neuralgia - its rare to have both sides. So, Alan came and told me with a warning and I had to have open mind. The topic - Marijuana
Ugh YUK - loathe, detest, anti. you name it I am it But, not the full plant - just one enzyme called CBD - the historical medicinal part of the plant - not the woowoo lala I'm stupid part - as I am anti-MJ and always have been. So after my heckles went up I relaxed and listened and as there is no THC involved (the woowoo part) I thought well if man cant take away the pain, maybe nature can. So i thought about it for a while, the codeine, the oxcarb' medication, hydrocodone, countless painkillers have done absolutely nothing and probably stressed my organs.. or do I try a few drops of CBD under my tongue and see what happens
well, yesterday I went to FoCo and found a CBD store that only deals with this oil. and he selected one for extreme chronic pain, added a flavor (its vile without as he had me test some) and I came home and took a dose of 4 drops under my tongue . Its not instant and has to build up like most meds do.
So now on day 2 , i "think" there's a difference , hard to tell as I stopped the TN med and started taking gabapentin at night (anti seizure med - i take for insomnia - have started taking again for the TN ... so lets see!
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