The last time I felt great with myself it was back in the summer of 2010. I had a lovely family holiday in Italy, at the seaside town called Ventimiglia.
I really enjoyed the sun, the food, and the people. It was the last time I wore a bikini. It was a holiday without pain.
September comes, back to work. I felt a bit bloated, my tummy was hurting, lately I was having problem emptying my bowels. I tried to eat light food such as tuna, haddock and vegetables.
I went to see my GP. After a quick visit the doctor said: “Don’t worry dear, you have just pulled a muscle, take it easy for a little while…” I wasn’t happy with the prognosis, I knew it was not a muscle problem, I had that feeling…it was something else.
I tried to explain to him all my symptoms, the pain here and the sore there. “Can I please have a MRI scan” I asked. Nothing, he did not change his mind. “Rest and take some pain killer if you need”.
As the months went by, symptoms got worse. Sciatica symptoms began to appear. Constipation, headaches, urinary incontinence, sexual dysfunction, loss of feeling and control of movement in the right leg and foot, dizziness, memory loss, migraine, loss of vision, pressure behind the eye.
My stomach was hurting. I had to take laxatives (and I still do) to empty my bowels. I feel better for a couple days but then I go back to feeling bloated. It looks like I am pregnant. When I go out to work I try to keep my belly in so people will not notice it. I do not feel myself anymore, my confidence is low. I am always in pain! The back, the leg, the stomach.
I had to go back to see my GP because I was really ill. I could not deal with these pains anymore, the GP felt my stomach and he said that I was constipated. He also said the pains were caused by my organs being pushed outwards by my swollen colon. He suggested eating vegetables and working out at the gym.
I took his advice, within two days I came out with diarrhoea, fever and a skin rush. I was feeling frustrated, I was going nowhere, I was not resolving my problem.
Booking an appointment with my GP was/is a nightmare as he seems to be always on holiday…sometimes I had to wait weeks before I could see him.
Anyway, the next time I saw him, he sent me to the hospital for a blood test which came back positive with an inflamed colon. The GP rang me and according to him, I was suffering with IBS (Irritable Bowel Syndrome). He told me “eat lean and white meat and try not to stress out”.
Not to stress out? I was in pain 24/7, feeling bloated, keep going for a pee every 10/15 minutes, constipated, etc. I followed his advice. Two months later I was still in a lot of pain.
One evening in August (2012) after work, I could not take it anymore and I drove myself to the Bournemouth Hospital. The practitioner nurse at the A&E refused to treat me, because according to her, I was not an emergency case as I was not bleeding, nothing on my body was broken or I was unconscious. She evens said that my personal details weren’t in the NHS computer system…She suggested to go to see the after hours doctor.
Sad, crying and a with unbearable pain I went to the 24 GP service. At the clinic, I explained all my symptoms to the doctor who gave me an urine test. The test was positive and the doctor told me I had a kidney infection! I had to take a course of antibiotic for four weeks.
Few days later I was in Naples with my family on holiday. I was walking with my husband and suddenly I felt stinging pain on pelvic area near my genitals. I could hardly walk. We managed to get back to the Hotel. I tried to calm down and I hoped the pain was going away. It didn’t. In tears I called a taxi. I wanted to go the A&E.
Over there I was treated for renal colic and given pain killers. My holiday was cut short and we went back home in UK.
Frustrated and annoyed with my GP I decided to change medical clinic and GP. Feeling hopeful, after few weeks, a met my new GP, a woman this time. I thought she would understand me more. Once again I begged for a MRI scan, denied this time because “You are too young to have a MRI scan, there are too many radiations…”
She wanted to do all the checks again, this is standard procedure. Here we go again! Blood and urine test, some strange swab tests in my vagina ( I will later find out, by chance that my new GP tested me for gonorrhoea and STIs without ME knowing ) and an ultrasound scan (on the referral letter she wrote that my pain was on the left side of my body instead of the right!!!)
When I confronted her about the swabs, she said “we have to rule out everything”. The ultrasound scan came back negative. Fed up and disappointed with the new GP, I went back to my old one. I lost a lot of time and effort and all my pains were getting worst.
One day after work I was in so much pain that I drove myself again to A&E. After waiting for few hours they checked me for kidney stones (as I was complaining of lower back pain, groin pain, leg pain so they automatically thought that I had something wrong with my kidneys) and kept me in for the night. I really hoped that they would give me a MRI scan (as I knew that with it I would find out what was wrong with me) but they didn’t.
The next day I went home still in pain and feeling hopeless. After the Christmas and New Year’s Holidays 2012 I went back to my GP to demand a MRI scan. He told me that he would request one (still to this day now October 2013 I am still waiting for it… and I do not know why he never did it either). Anyway with the New Year I was determined to find out what was wrong me with me, so I decided to seek help privately at my expenses.
As I had colon problems I went to see a private consultant gastroenterologist (The Harbour Hospital, Poole, £ 150) and after telling her all my symptoms she than felt my tummy with her hands and she told me that I was all clogged up with excrements. She suggested having a colonoscopy. She tried to sell me a private procedure for about £2ooo and I could have had done in days. I declined the offer so she told me she would book one for me through the NHS as she was working for it as well!
I got my appointment but it was months away. I couldn’t wait that long. I decided to make some phone calls in the country I was born, Italy, to see if I could have a colonoscopy don quicker than UK. My other aches and pains are STILL THERE; my lower back pain is getting worse!
Luckily I found a private hospital near the village where I used to live, that was offering a colonoscopy in less than two weeks and for half of the price I was quoted in UK. I booked my appointment and my flight to Italy.
Finally I had my painful medical procedure done. It came back negative. I was not full of excrements! What a relive. Still, my problem was not solved.
The Italian consultant suggested having a gastroscopy. I agreed to have another painful procedure.
The medical results were that I had gastritis, colitis and hiatus hernia. Not good. The consultant told me to eat bland food like chicken, fish, rice, and to cut out pasta and bread and dairies and coffee for a few months. So I did. I was very hard as I love my Italian food, especially pasta carbonara...
After three months of diet, nothing had changed. Same bloated belly, constipation and generally feeling bad.
As most of the painkillers do not work or they work partially on me, I bought myself a TENS machine. (TENS is a well-
May 2013, Harley Street, London. Fed up of waiting for a MRI scan with the NHS, I decided to pay for one. £1500 for a full body MRI scan plus an additional MRI scan on my lower back (£450). Time is running out, the pain on my back has become unbearable.
I had to wait for a week for the results; it felt like the longest week of my life!
My life goes on, pain or not pain. Family, work, keep me busy. Every day I use my TENS machine, it is a comfort. I don’t sleep well at night, the pain on my right leg and back keep wake me up. I feel always tired, the coffee keeps me going.
On May 21, I received an e-
I goggled S4 sacral cyst and for the first time in my life I read of the Tarlov cyst. I was in shock, all the symptoms described on all those web pages matched all the conditions that I had.
I was also relieved because I had found a meaning, something responsible for my pain, a thing that would cause all this agony…See people, this is real, it is not in my mind,
The bloating, the dizziness, loss of vision, constipation etc., were all related to cyst pressing on the nerves.
Back again to my GP, that once he read the medical documents said “I am glad that you have found out what you have got...” Not thank you dear Doctor…to be honest, I think that my doctor is useless but I need him just to find the light at the end of this black tunnel.
Anyway, I have got a referral to go to see a Consultant Orthopaedic and Spinal Surgeon at the Salisbury Hospital. I am feeling positive and I can’t wait to go to see the specialist in the matter.
July the 4th, finally I was at the Hospital with my husband, to see Dr Chapple. To tell the truth I never saw physically Mr. D.Chapple but one his junior assistants. I do not know the reason, probably is a normal procedure. He was next door anyway.
After a quick visit and a little chat, the assistant doctor went to see Mr. Chapple. He came back with the diagnosis. “Madam, you have got arthritis on your back and a stiff back that does not like to be handled”. I did not expect that to be the answer. I tried to mention the cyst and the name Tarlov. He quickly reassured me that the cyst has got nothing to do with my symptoms.
My husband insisted about the present of the cyst and that he researched the internet about the Tarlov cyst. The doctor replied with a bitter “sometimes you want, you think you have those symptoms...” He made me feel I was mad and doubting what my body was feeling.
He prescribed some steroid injections. We left thinking, what a waste of time and money. I wanted another opinion about this cyst on my back.
It was nearly August, time for our family holidays in Italy. Once again I managed to find a spinal specialist in my country. I was not keen to go on holiday because I was feeling depressed and low. Sometimes I wanted to open my back with a knife and remove the cause of my hell.
The second opinion from Dr. Panzarasa was not better than the first one! On the 19th of August I went to see this well-
I was feeling confused and angry. What if is he right? Am I too sedentary and need more exercising? Before it was arthritis now it is lumbago…Are the two doctors wrong? Are they both right?
Dear Doctor, I came a long way to see you, but your arrogance was more painful than the money I paid to trust your expertise!
I won’t give up, my body, my head is telling me to carry on and try to find another doctor a third opinion. Why is nobody telling me, yes you have a cyst, it might be the cause of your pain?
We were nearly at the end of our holidays, my husband whiles surfing the net came across the news that Dr. Feigenbaum, an American Neurosurgeon with extensive experience in treating Tarlov and meningeal cyst, in November would be in Cyprus at the AIMIS clinic.
I got in touch by e-
I did everything they asked me to do and after about ten days I got the diagnosis. This is the e-
It was a Saturday evening when I got the e-
Finally after three long years I have found to my own expenses what it is wrong with me. This could be the beginning of the end of this long journey.
All I wanted to do was to get all the information together, when, where and how much it will cost me. So after exchanging a lot of e-
I didn’t see any other options. Stay with the pain and gradually get worst, end bed ridden or on a wheel chair for the rest of my life it is not how I saw my future.
The surgical procedure is going to cost 29500 euros (operation, two nights’ hospitalisation, seven days hotel and transport from/to airport) plus flights to Cyprus.
I am going to use all my savings to try improving my health. I say improve as I know that my sacral nerves could be permanently damaged leaving me with a degree of disability.
On the 21st of November 2013 I had my life changing operation, my two sacral cysts were successfully removed. When I woke up after the surgery, I knew that it went very well as all my aches were gone.
The day after the operation, Dr. Feigenbaum came in to my room and he helped me get out of bed and us walked together in the corridor. After three years of terrible pain, I felt so relieved.
I am happy again :-