Time Flies

Its been around six weeks since i last posted. Not much has been happening during this time for me. I’ve mostly been on loads of pills and in bed.

After 2 years of monsoons failing this year the south west monsoon came back with vengeance causing widespread floods, the worst in over a decade. After such a prolong drought everyone was looking forward to the rains but not the floods as many people suffered due to this and left a lot of families displaced.

Luckily for we weren’t affected by the floods as the area we live in although received a lot of rainfall escaped the worst.

The days leading upto the rains were very hard on me as my pain flared up significantly. I’ve heard from other fellow chronic patients that weather affects their pain levels as well. Scientifically there is no exact explanation how this happens but in my case I can always tell whenever a storm/ rain is approaching.

The weather got me down a lot and was mostly in bed struggling to cope with the extra pain.

Now the heavy rains have ceased and my pain levels are back to normal (which is still a serious amount!!).

 

Following up on the meeting i had with Dr. Dammika Dissanayake (Plastic Surgeon)

From what i understood after the meeting there are at least 300 BPI patients a year island wide which is quite a  significant number. In countries where there are many motor cyclists the chances of BPI are higher following an accident. In Sri Lanka another way patients get this injury are people who were injured during a battle while in the army. A gunshot wound can also cause damage to the brachial plexus. So for a country that was in civil conflict there are quite a lot of these patients unfortunately.

The problem though is that even now in the present day the referral system in Sri Lanka doesn’t work properly therefore many patients don’t get diagnosed in time which means that treatments cannot be done in time, if not ever resulting in many patients been undiagnosed. Specially in rural areas.

In my case back in 2000 this same problem was there. Even back then there were a few doctors who did perform exploratory surgery for BPI patients and carry out repair work on the damaged nerves. Although seeing 20 – 30 doctors at various hospitals (Starting with the national hospital who didn’t even diagnose my injury) i was never referred to any of these doctors and at that time there was very limited information on the internet as well. If I had been referred to the correct doctor back then maybe there would’ve been a chance to get some recovery on my hand and experience less pain.

Anyway the past is past and nothing can be done to change that so hopefully with this awareness and support group I can help other patients get the correct help and support in time.

From a surgeons point of view after consulting Dr. Dammika he mentioned that if a patient is referred within 1 year of the accident then a surgeon would attempt surgery. After that window the chances are very low that a surgeon would operate as chances of recovery are slim after that period.

Another problem is that there are very limited surgeons available who would operate on a BPI.

So to summarize;
The referral system in Sri Lanka doesn’t work
There aren’t enough surgeons available in the country to perform this kind of surgery
Many patients, their families and general public aren’t aware of this injury

The 2nd point there is nothing we could do about however the 1st and 3rd point mentioned above there is something we could do about and i’m hoping by distributing leaflets of the injury and directing patients to our support group this would slowly help in creating awareness.

I’m trying to get this out on the newspapers too but this hasn’t been that easy upto now.

Dr. Dammika Dissanayake was very helpful and said he will write out an article on the current treatment methods in Sri Lanka. I will update the site as soon as i receive this from him.

Currently i’m just finalizing the designing of the leaflets which the graphics guy promised me will deliver by this Sunday. (fingers crossed) After that get them printed and distribute them to hospitals.

Andrew de Bond

A step forward

Monday
24th April 2017

Woke up this morning to some good news!

I’ve been contacting doctors in Sri Lanka who specialize in BPI/ nerve patients.

I got in touch with Dr. Dammika Dissanayake exactly a month ago and after couple brief messages I finally got a meeting to meet him this Thursday.

His profile from www.omicsonline.org/

Dammika Dissanayake obtained his MD in year 2000. He initially had training in General Surgery that was followed by Plastic Surgery which included special training in Hand Surgery. His special interests include aesthetic surgery and micro surgery. He was trained in Sri Lanka, India, Australia and Singapore. He has several publications in indexed journals to his credit. He also has delivered many lectures/presentations in international forums. He has been instrumental in conducting several free reconstructive surgery sessions for the underprivileged patients amounting to hundreds of operations over the years.

So over next couple of days must work out the questions I need to ask him at our meeting on the current treatment methods of BPI patients and also to refer patients and there families to the online support group for support.

Lets hope it goes well!!

Will update over weekend on how it went.

Andrew de Bond

Me today – 23rd April 2017

Whole purpose of me starting this awareness/ support group is to help others suffering with similar nerve pain.

Also another reason is so that I can start writing again as I haven’t done in awhile.

Times gone by rather quick… The last time I stepped out of the house was on the 28th February when I went to collect my last pay cheque and have farewell lunch among my ex-work colleagues.

Actually in fact on the 5th of March I did come to Colombo for a meeting along with Dilki. But since then I’ve been home bound. Mostly room bound!

It’s been almost the same routine daily. Some days I wake up very early like 4ish and can’t get back to sleep and sometimes I’m in bed for 2 – 3 days in a stretch, excluding the toilet breaks and the occasional cigarette.

It’s been over 2 months and I haven’t even edited my CV yet. Currently I’m fed up with working and not in a proper mental state to start process of applying for jobs again.

I’ve been rather lucky over last 7 years as I’ve never had to face a proper interview for a job and kept my job for long periods of time. But right now my confidence is so low and body much weaker that I fear having to go through the process of applying for jobs again.

So over the last 2 months or so I’ve gone through various experiences. For times I binge drank for days/ weeks, stayed in bed for days at a stretch.

Only thing I’m happy that I’ve achieved is setting up this awareness & support group for brachial plexus injuries in Sri Lanka and Asia.

There’s much more work to do but things moving rather slow as getting replies, etc takes time.

Overall I would say right now I’m ok ish… Most certainly lost and can definitely be better!

Andrew

andrew.de.bond.brachial.plexus.injury

Doing Very Well

i’ll be at squires with vimi, jude n my mum. n my dad might also come along. ..

i’ve been doing really well since last october. havent really posted anything on coz ive been working so many hours n i’m exhausted most of the time. the amputation really did change my life around. i havent been depressed at all since then. still does hurt a ++#% load but i do my best to keep my self busy. i’ve also cut down on my pills… stopped taking my sleeping pill (7.5mg zopiclone) completely. then reduced to 600mg pregabalin from 750mg , n from 100mg tramadol to 50mg. going to stop taking tramadol completely soon… i occasionally take 0.5mg of clonazepam at night to help me sleep. i think cutting down on the pills also has made me do more things, be more confident of myself n socialize more.. anyways… i’ll catch up with all of u at squires.. vimi might not be able to make it sometimes coz she works every weekend now n she just started a new job. but will see…..
Andy

Oroginal Post, posted myself 10-12 years ago..

Link

Quick Question

for ppl who dont know me…. had accident in aug 2000, got arm amputated on june 2007… lifes def better than b4… but still after 8 yrs i still have not figured out a way to fall asleep…. i spend atleast 4-5hrs each night with pain unable to sleep… with or without my pills its the same…
Last Christmas i gave up my sleeping tablet called zopiclone and that made me do more things like work n i had a more clear head..my plan is to stop all my pills soon but to just have a REALLY REALLY good sleeping pill for emergencies when im having a really bad night. The last few weeks i gave up taking tramadol (after abt 4 yrs)… and clonazepam… the pains been horrible!!! (Only at night when i try to sleep though… ) during the day i managed to keep it under control…and im not working right now so i guess my body doesn’t get tired enough…
so right now the only pain killlers that i am on is 150mg pregabalin in the morning and 300mg pregabalin at night…. im hoping to stop that gradually in the next few weeks as well..
can someone plz reccomend a really really strong sleeping tablet that will help me sleep instantly when im having a lot of pain…. i dont wanna use it regularly but only for emergencies coz ill be going back to work in the new year hopefully and it s hard to wake up at abt 7am when u fall asleep only at abt 4 or 5 every night…

Andy

Oroginal Post, posted myself 10-12 years ago..

Link

 

Hi Everyone

Hi everyone…

i’ve been rather quiet lately … i’ve been going through a lot of stuff lately… with my health. i had a really nasty kidney infection a few weeks ago and i had to call the ambulance bout 2 weeks ago as my temperature was in the 40’s and i live alone so couldnt really do much as i was really weak. spent abt a week in hospital. got discharged last week. still on a lot of antibitotics. the pain in my hand shot up significantly when i was ill. im feeling better now. got the swine flu vaccine today as my gp recommended i get it and im going back into work tommorow. been feeling a bit low lately as well. probably coz of the weather… i dunno exactly but i’ve asked my gp to refer me to a psychologist. i was finding it extremely hard living alone recently and wasnt eating properly. i’ve got my mum over now. she ‘s gonna stay with me til early jan. i really need to put on weight fast. i saw a dietician when i was in hospital and she asked me to ask my gp tp prescribe me sme protein shakes. i’ve lost 18kgs in the last year… mainly coz of all the stuff i went through at the start of the year wit my ex. but since then i just dont seem to be putting on any weight…. right now i’m just 46kgs. hopefully the protein shakes would do smething. still managing without any pain killers except for the occasional tramadol if its really bad but other than that i dont take any pain killers or sleeping tablets…

Andrew

Oroginal Post, posted myself 10-12 years ago..

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