My GBS Journey
Date - 22nd March, 2018 Name - Vigneshwar Bhatkurse
In This Story
1. My Background
2. Initial Symptoms
3. Doctor Diagnosis
4. Medical Treatment
5. Hospitalization
6. Post Discharge
7. Current status
8. Summary
9. Other Information
1. My Background -
Hello all, my name is Vigneshwar and I am an IT professional working in the manufacturing industry. I am 47 years old and live with my family in southern India. My wife is also a an IT professional and our daughter is studying in Xth standard and preparing for a major milestone in her schooling journey.
We all had an excellent new year celebration as year 2017 came to end and heartily welcomed year 2018. However couple of days into the new year followed business as usual, but soon life had a bitter surprise for me as I picked up GBS. I do not know the source of this virus and how I got it, it’s a sheer bad luck that struck me.
2. Initial Symptoms
On 3rd Jan as I finished my dinner and watching the news on television, I had little tingling sensation in my feet and palms. But I ignored as it did not bother me too much.
Next day morning when I woke up, my wife noticed that my left eye had drooped. (it appeared smaller as compared to the other eye). Also the tingling sensation in palms and feet continued.
Left eye dropping
The major setback I felt was when my hand grip becoming weak as I tried to hold a glass of water. In the past, I never had similar weakness, hence got worried and thought to visit the doctor. This decision of visiting the doctor proved to be the right thing as I my journey with GBS got started.
3. Doctor Diagnosis
I went to a nearby multispecialty hospital and met the General Physician who after understanding the symptom’s asked me to consult the Neurologist
Hospital Admission
The Neuro doctor was sharp and did a detailed observations and tests. He noted the following :
Facial weakness (pupils reactive test)
Left eye ptosis+
Power level less than 5 at Knee, Ankle, Wrist
Power level less than 4 at Shoulder, Elbow, Hip
My Reflexes were sluggish
Based on the above, my doctor suspected that I had GBS & asked to get admitted for the IVIG treatment.
4. Medical Treatment
Based on the advice of doctor I got admitted on the same day. The initial health parameters were checked and the IVIG treatment started in the evening.
During this period, there was a rapid spread of GBS and within a day I became immovable with legs, hands and entire body muscles refusing to listen to the brain.
As I had to take 35 bottles of IVIG, this infusion took 4-5 days with every day approximately 7-8 bottles of IVIG being consumed.
Medical Treatment
Due to the acute and aggressive spread of GBS, I had to be shifted to ventilator support soon as I started having difficulty in breathing and swallowing. Tracheotomy was done and feeding pipe was inserted through my nose. Specialists in the hospital also performed Nerve Conduction Study (NCS) and Lumbar Puncture. Result confirmed that I had classic GBS and all were happy that diagnosis was in the right direction. Also, the sample collected through Lumbar Puncture test showed no infection.
5. Hospitalization
Progress I was in ICU for almost 4 weeks with multiple body insertions like –
Trach in my throat
Feeding pipe
Urinaly Catheter
Cannula on wrist for IV fluids, injections
During this period my voice was blocked and I was not able to speak. This was the most difficult part since my entire body was immovable and I was not able to call for any help. All I could do was to make the nursing staff read my lips and later indicate the alphabets of the word with my eyes as they hold an alphabet chart in front of me.
The first two weeks in ICU were critical as my condition deteriorated rapidly. I was sedated for few days when multiple tests were done for diagnosing any other disease presence. I don’t remember this phase of my ICU stay.
I also picked up lung infection during my recovery leading to few more days of stay in ICU.
Treatment Progress
From 3rd week my condition started improving slowly as my legs, hands & fingers showed signs of movement. Physiotherapy was being done twice daily though I was not able to do any movements on my own. Later I started breathing on my own. Doctors took all precaution while de-cannulating like lung expansion, sugar levels, ENT, swallow capacity, breathing with T-piece, abdomen ultrasound, etc. and finally shifted to general ward for few days before discharge
My motor power gradually improved with aggressive physiotherapy. My power showed 3 / 5 when I was getting discharged from hospitalization. I was just able to stand with support and was advised to continue physiotherapy at home..
6. Post Discharge
I came home knowing it would be a long recovery process. We arranged physio to come to home daily to monitor the progress as well as improve my muscle power.
Wheelchair and walker were arranged at home for my recovery. In the whole process I lost weight ~20 kgs
Lower limb / legs improved gradually and within couple of weeks I was able to walk inside the home.
Upper limb /shoulder did not improve and hence the physio started simulation by giving muscle activation therapy ( similar to mild electric shocks).
In the wheelchair at home
In couple of weeks the hand motor movement improved. As I started improving and becoming independent, the physio’s visit to home got reduced to 3 times to 2 times and eventually one per week. However I still need to do the exercises daily on my own till full recovery.
7. Current Status
Now it is been almost 3 months since I got GBS. My recovery is progressing good, but still a long way to go. I need to do the physiotherapy daily till full recovery which may take another 3-6 months. My Power has improved to 4 / 5 . Recovery is as followed:
Legs as I am able to Walk / climb staircase
Hands as I am able to do most of the tasks
Independently able to sleep, get up
Able to slowly type / send messages
Going forward - I need to get my power in hands as I am not able to lift heavy items. Fingers to come to normal since they are very slow to recover.
Staircase walk
8. Summary
To overcome the GBS journey, one needs to be mentally strong and have patience. I did not give up hope as my body parts refused to move.
Early treatment helped to control the nerve damage
Physiotherapy should be done at regular intervals which will make the muscles gain activation and power. There is no short cut to this.
My Inspiration
My Journey of GBS started with quick diagnosis and treatment. My condition deteriorated rapidly, reached plateau and then started improving. Due to multiple insertions on the body developed few complications which delayed the recovery. The doctors ensured that I am monitored closely in ICU. Family and friends came to meet me daily which kept me going during the tough times. Overall I am happy to put the tough time in the past and looking forward to future for full recovery.
9. Other Information
ICU Hospitalization Family support
# Description Response
1 Where you are located India
2 Age of diagnosis Less than 3 months
3 Date diagnosed 4th January, 2018
4 What residuals you have if any None from GBS medication. However discharge advisory as –
To continue physiotherapy daily
To control food habits as I am diabetic
5 Can other GBS fighters contact you Yes, I am happy to talk to other GBS fighters and share my experience
6 GBS Variant Not identified
7 Treatment used Intravenous Immunoglobulin - IVIG
35 bottles of IVIG were utilized for the treatment spanning 4-5 days
8 What your symptoms were Tingling sensation in palms and feet
Left eye drooping
Hand shivering when holding glass of water – Hand grip weakness
Less confidence when using hands/legs, example driving
9 If you had a tracheotomy or feeding tube Yes, had both.
I slipped into ventilator support after a week of admission to hospital
Feeding tube inserted since I could not swallow
10 Your favorite quote Don’t Give Up, testing time will be over soon
One month post discharge
* Family, Friends & Well-wishers support is very important to cross this GBS journey. Without them it would not be an easy phase. Thanks to all.
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I "Justine" wanted to show you the beautiful job that Vigneshwar did on putting together his story. Unfourtantly this blog didn't
accept the format so I had to make some changes.
