Published by ICSEB at 29 January, 2018
Surgery date: February 2016
THE STORY OF MY DISEASE AND RECOVERY
I remember that since I was 3-4, I used to see vibrations of colours that moved and, at the same time, I had the sensation that I was flying upwards. I was a quiet child, I didn’t like active play and preferred quietness, silence and heat. At 12, although I became more active, I found gymnastics classes difficult. I couldn’t climb the rope, my chest would start to hurt and I had no strength in my hands. I didn’t like running, jumping and had unpleasant sensations in my head and neck. Since childhood I haven’t been able to distinguish smells.
After giving birth to my first child (the birth was natural and difficult, since I had no contractions and needed a blood transfusion), in my thighs appeared pitting oedemas 30 cm long and 3-5 cm deep. They didn’t hurt, but were horrible to see. They disappeared one year and a half later.
When my son was one year and a half, I returned to work. I brought a lot of work home with me and in June 1984, while working at home, I completely lost my vision for about 15 minutes. They called the ambulance, the doctors were in shock while checking my blood pressure, I heard them say: “With this blood pressure you can’t live”. I was hospitalised, but they were not able to identify the cause of my problem. After this episode, I started having occasional, intense headaches, with low blood pressure, vertigos, nausea, vomiting. I often had the sensation that I was about to faint and started having ringing in my ears.
In 1985 I gave birth to my second child. I had no contractions this time either and they had to induce the birth. It was a quick birth. I spent the following year with a permanent cold. After a year, wounds and cuts stopped healing and could remain swollen, with pus, for months. Scars were left and no treatment would help. At the same time, my heart started hurting, when I lay on the left side I could hear my fast heartbeat, I even noticed it in my ears. My pulse was 92-125. I was diagnosed of chronic tachycardia, but they couldn’t find the cause. Everything kept on like that until 2002.
In 2002 we were living in New Zealand and bought a butcher’s shop. The job was physically hard and I was very cold. During this time, I was very stressed. In July-August I had my first crisis: I lost consciousness and when I woke up, I had a terrible headache, couldn’t move my tongue, I dragged my left leg and my left arm felt like hanging and in horrible pain. The left side of my face felt like falling off. I was admitted to hospital and had a brain MRI done, but nothing was detected. During 3 months I had several crises with tachycardia, low blood pressure, nausea, headaches. In one occasion I was clinically dead, my 20-year-old son was with me. When I recovered, I was very swollen, with a strong pain in my heart and headache. I was hospitalised during a week. Tinnitus started again and at times I couldn’t hear anything because of that.
After being discharged from hospital, I started feeling pain in my right knee when I got up from sitting and it was so strong that I screamed with pain. I was treated with no results and after 2 years the pain was gone as unexpectedly as it had appeared. In those 2 years and following a complete MRI with contrast, I was diagnosed of Syringomyelia and Chiari I.
At the end of December 2005, we returned to Tomsk (Russia). Every now and then I would have a crisis, especially in 2008 and 2011. A couple of times a year a neuropathologist would treat me with vitamins for the brain and antidepressants. In 2008 I became very irritable. My hands and feet had been cold all my life. Despite that and the pain, since 1998 I had been training every day because I knew that would help preserve the strength in my lower limbs.
In 2013 I started having constant burning pain in several parts of my body: my joints, muscles, bones of the left leg. I had cramps with horrible pain in my feet, which would last 15-30 minutes. I also started having problems with my bowel; I couldn’t hold it and had a few “accidents” while I was out.
In 2014 I started experiencing falls when I was out, as if somebody was hitting me on the back of my knees. In 2015 I began to fall when I got up in the morning, with pain and weakness in the Achilles tendons. I couldn’t walk more the 2 km because of the intense tiredness, vertigos, weakness, nausea and vomiting. It was difficult to climb stairs – I live on a 5th floor with no elevator.
On February 23 2016 I underwent surgery at the Institut Chiari & Siringomielia & Escoliosis de Barcelona and was discharged on February 24. The intervention was a success and I’m feeling well.
FIRST MONTH AFTER SURGERY
Oedema in the eyes, pain in the eyelids (mainly the right one). Until 02.03.2016 I had a lot of eye discharge in the morning. On 02.03.2016 the sensation of eye fatigue disappeared and it was easier to look to the side and upward.
On 03.03.2016 the skin colour of my hands changed, the redness and the oedema disappeared. The oedema in my face and eyelids was gone. My eyes looked bigger. I no longer heard my heartbeat when lying on the left side. Since surgery, my pulse has been 73-75.
For 15 years I could not lie on my stomach because of the strong lumbar and dorsal pain, but since surgery I sleep like that (it’s my favourite position). I have no pain in my bones or joints. I realize that my bowel and kidneys function differently, now I can hold it. I had an “accident” just a couple of times. I’m walking a lot, approximately 5-7 km, and I’m not getting tired.
When for surgery they had to place the IV, the wound healed immediately, while before it would have taken much longer to heal and a scar would have formed.
The colour of my nails changed. Before surgery the nails of the first and second toe of both feet where black and irregular, while now all my nails are smooth and shiny.
Since 29.02.2016 I’m clearing my throat less frequently, while before, especially at night, it seemed as if liquid was running down my throat and I kept coughing.
My body temperature changed. At night I don’t need to wear socks any more, I even feel warm. It seems that my blood circulation improved. My head seems clearer and I no longer notice ringing in my ears. The irritability is gone, I feel calmer.
On 03.03.2016 I got cramps in my left foot, which disappeared in a few minutes. On 04.03.2016 I had my postoperative check-up and improvements were reported in everything. Even the grip strength in my left hand improved with 10 kg (prior to surgery it was 7 kg). They changed the dressing and the wound was healing well. Now I can sit with no problem. On March 5 I had a mild pain in my left shoulder and arm during a couple of hours. I can now walk for hours, I’m full of energy.
The old scars on my legs from the 2015 dog bites and the falls from the stairs are less visible. Today is March 6 2016.
On 07.03.2016 I was on my way back to Tomsk, I had a good flight, the wound hurt a little.
In 2001 and 2006 I underwent two abdominal surgeries to remove a seroma. After that, my abdomen felt like a pillow and as if it were not a part my body. Since the sectioning of the filum terminale, the nerve connections recovered and the skin of my abdomen now feels good. Furthermore, the post-seroma keloid scar on my abdomen reduced a little this month (today is March 5 2016).
In the morning I’m coughing up white mucus – am I clearing my lungs this way?
SECOND MONTH AFTER SURGERY
My health is stable. Sometimes, very occasionally, I feel a very mild muscle pain in my legs which lasts half an hour. I still cannot have sex, we tried but the internal scar started hurting. This lasted 2 weeks. I had a couple of mild headaches. I’m still coughing up white mucus, it feels like my lungs are clearing up.
I’m training with my upper body 20 minutes per day, stationary biking 5 minutes and walking 5-6 km. After 3 sessions of stationary biking my lumbar spine (the wound area?) started hurting. I stopped working out for now and will see if the pain decreases.
The night between the 14 and 15 of April, my knees, elbows and arms hurt a lot, I felt the pain but could not wake up. The next morning only my elbows hurt and after exercising the pain disappeared. Two days later I woke up at night because of a strong pain in my thighs, which was gone in the morning. I noticed that the pitting oedemas in my right thigh and the buttocks are less visible. I keep having a mild lumbar pain. My bowel functions completely recovered 2 months after surgery, now I can go for a walk and hold it with no problem at all.
THIRD MONTH AFTER SURGERY
My health is good, I have an active life.
The night between the 25 and 26 of April I woke up because of an unbearable pain in my lower limbs, which went from my groin down to my toes. My muscles and bones hurt for about half an hour, after that the pain was gone. The following night my knees hurt for a short time. Were my nerve endings recovering?
On May 1 I had an intense burning pain in my wound, I took paracetamol during 2 days and the pain disappeared. On May 10, at night, my right arm hurt for a short while. Between the 19 and 21 of May I stopped coughing up white mucus.
The last week of my third month post-surgery, I was hanging wallpaper, going up and down the stairs, and my lumbar spine started hurting. I took paracetamol and the pain decreased, just a mild discomfort persisted. I’m assuming it’s too early to carry out these activities.
My left eye started hurting slightly (today is May 23 and I’ve been in pain for a week already).
FOURTH MONTH AFTER SURGERY
My health is good and stable. I’m walking a lot and I’m active. This month my cervical spine hurt and made me feel tired for a couple of days.
FIFTH MONTH AFTER SURGERY
My health is good and stable. I’m walking a lot. We travelled to Vietnam, I walked a lot and felt well. On June 27, at night, my knees hurt for about half an hour.
SIXTH MONTH AFTER SURGERY
3 days before my birthday, the wound started hurting. The pain lasted for a week and I stopped exercising for a couple of days. Now I’m in no pain at all.
On August 30 I saw my ophthalmologist, he told me that my vision improved by 70%. Now I can drive without wearing glasses. Before surgery my vision was -1.5 in the left eye and -1 in the right eye, with -1 bilateral astigmatism. Now my vision is -0,75 in both eyes and the astigmatism in the left eye is cyl-0,5; ax45º.
ONE YEAR AFTER SURGERY
I’m feeling well and I’m very active. The only problem is a mild lumbar pain. In April I’m going to update my MRIs for the check-up. We will see how it goes.
E-mail: [email protected]
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) complies with the established in EU regulation 2016/679 (GDPR).
The contents of this website are a non-official translation of the original content of the website in Spanish. The translation is courtesy of the Institut Chiari & Siringomielia & Escoliosis de Barcelona with the purpose of facilitating comprehension for anyone who wishes to Access the website.