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13th Instalment: Neuro Surgery

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Thankyou text

 The Neurosurgeon!

I think this may be a short blog because I would actually rather forget this part of my journey!

It may be hard for people to comprehend that this was a worse time for me than any other during the build up to my diagnosis but this is me!

 

It was time for my neurological surgeon appointment!

3rd August 2010, a date I thought I would have forgotten but unfortunately for me (not for this blog) the appointment is in my old phone diary I have previously spoken about! Thank goodness for technology right!

I was incredibly nervous about this appointment, luckily my partner was with me as she always is at all the important ones!

It was an early appointment, so not much time to worry about the unknown! I remember sitting in the waiting area, dry mouth, heart pounding!

 

We all get anxious at the Drs…

We all get anxious waiting to see a consultant!

This is what I was telling myself!

All I could think about though was the word surgeon! I was terrified of it & the thought about the possibility of having to have an operation!

When I broke my leg at the age of 18 I remember crying all the way to surgery! It is such a frightening experience that so many people face everyday!

 

I was lost in my nightmare I had created about this appointment when my name as called!

Gulp!

It was time! I really was terrified!

I walked into the consultants room with my partner, heart pounding, legs like jelly

 

 

The consultant introduced himself & asked me to take a seat. I won’t say his name because 1: I can’t remember it & 2: I disliked him as soon as i shook his hand!

 

He took a look at my medical notes & asked me why i had come to see him. Surely he should have that information! I explained to him that I had been referred by my physiotherapist for an MRI which showed a ‘disk bulge’ at the top of my spine that was close to touching my spinal cord. My Dr had then referred me to see him, the neurosurgeon in front of me that had all this information in front of him!

I explained to him that I had also recently had an MRI because of problems with my vision which showed that I may have MS. He asked why I was still seeing him then? Huh!

I told him that I had to have more tests done & I was told by my physiotherapist to keep this appointment as he, the neurosurgeon would know more!

 

He then mumbled into a dictaphone that he was holding in his hand, exactly what he said is not known! He said something to a nurse that was in the room and then told me to sit on the bed.

He drew the curtain around & told me to take all my clothes off except underwear and lie on the bed!

I had no sheet or towel to cover me, no gown to put on. Just open to this man! The nurse had stepped outside which also unnerved me!

When the nurse came back into the room she still stayed the other side of the curtains!

I had a number of tests, I can’t remember all of them exactly, but I think they were all mainly neurological ones! I remember he tested my reflexes. This is one test that I really don’t like!

When he finished he told me to get dressed and sit back on the chair.

He continued to mumble into his dictaphone then looked at me and told me I had wasted his time! He said that the disk bulge was of no concern and that it is because of the MS that I have the pain!

 

There was nothing left to be discussed, he didn’t want to discuss anything else more like! The nurse escorted me & my partner out of the room and we made our way back to the car!

Of course we spoke about the situation, we came to the conclusion that I wasn’t wasting his time because I was told by the physiotherapist to keep the appointment! She must have thought it was worth following through!

 

After we had finished talking about the horrible man and his horrible habits i told my partner that I was glad the disk bulge was of ‘no concern’ as it meant i didn’t need to have it operated on after all!

I was elated by this!

We started to laugh together, I said to my partner ‘its ok, i don’t need an operation because I probably have MS!’

 

How come I found this so funny? Was it genuine laughter or nervous laughter?

 

I hadn’t long to wait now until the next BIG appointment!

 

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12th Instalment: Acupuncture

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Thankyou text
It was the middle of July 2010 when finally I had my appointment letter come through for the Neurology Team at University Hospital Coventry, 11th August 2010 at 3pm! That wasn’t a date that I would forget quickly! It was the day after my Granma’s birthday!

I was still going to work and had to cover at different local branches which meant a lot of travelling! This was really tiring and hard as my vision was starting to get a little worse every day, I still had pain behind my right eye and continuous headaches.

I wasn’t getting the flashing lights as much but it was getting harder to see out of my right eye! I had no sight at all in my right peripheral vision which meant every time I wanted to look to the right I had to turn my head.
This wasn’t the best of things for me to do because when ever I tried to turn my head I would get a pain shoot down my left arm. Much like an electric shock feeling! This is what I was seeing Catherine my Physiotherapist for!
Catherine had decided that because the manipulation she was doing on my shoulder area wasn’t helping with my pain she was going to try something different. She explained to me that acupuncture has been known to help with pain and suggested we try it.
I have had acupuncture treatment before, when a married couple bought our family Health Food & Ethnic Fashion Shop ‘Way Of Life’ They kept the  Health food side and turned the Fashion side into Holistic Treatment rooms. The new owners (Husband & Wife) were the main Acupuncture Consultants and offered the remaining treatment room for hire.
I was ‘kept on’ as Manager of the Health food side and took bookings for the treatments that were offered.
This is when I tried Acupuncture for the first time. I wanted to be able to tell people about the treatment from a ‘firsthand’ point of view.
I loved it. It isn’t as scary as most people think! Okay, they put needles into different areas of your body depending on the treatment but they are tiny, hardly hurt and are quickly forgotten once you start to feel the benefits from them!
Because I knew the benefits of acupuncture first hand i was very keen when Catherine mentioned it. My only concern was having to change physio’s! Meeting new people used to make me very anxious!
But this wasn’t the case as Catherine was also a fully trained, fully qualified Acupuncturist! My luck was in! A new appointment was booked for my first acupuncture with Catherine.
Even though I had had it before I was still extremely anxious about the appointment! I remember thinking how much worse my anxiety would have been if it was with someone new!
Catherine explained to me how she would be doing the treatment, it was a different method to how I had it the first time at ‘Way Of Life’ they used a technique called ‘Moxibustion’

Techniques

As well as needling acupuncture points, a traditional acupuncturist may use other Chinese medicine techniques such as:

  • moxibustion: heat is applied to an acupuncture point or meridian using moxa (a therapeutic herb) and/or heat lamps to warm and relax muscles 

 

Even though Catherine used a different technique to the one I had experienced before with the heat I still found it extremely relaxing and by the time she had finished I noticed that the pain wasn’t as bad! Bliss!

We agreed on another appointment, Catherine said she was happy to continue seeing me until I knew more from my Neuro Surgeon appointment and of course the ever looming appointment with the Neurology Team at University Hospital Coventry!

10th Instalment: Friends are always there

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Thankyou tag to blog

I’ve been trying to remember a timeline to how everything happened, it all seems so ‘muddled up’
My memory tends to be quite good if I can link something memorable with a time!
I asked a close friend if she could remember when we went to see P!nk at the ‘Richo Arena’ (what was the Coventry Football Stadium) but she wasn’t sure.
I remembered I had an appointment the day after the concert because I also remember being so tired for it!
So being the stubborn person I am, I didn’t give in and Googled it!

Continue reading 10th Instalment: Friends are always there →

8th Instalment: MRI Results

Thank you every one for patiently waiting for this, my 8th instalment.

My aim is to inspire & be inspired, to continue to be strong & continue to be confident!

I may be slow at blogging but that is only due to my MS. As with everything, I’ll get there eventually!

 

 

The journey home from that trip seemed to take a lifetime! We didn’t hold much conversation as we knew what we had to do when we returned.

Once we had taken our caravan back to the holding we went straight to the vets to collect Jake’s ashes!
So sad!

When home we did what most do, check through the post!
We had only been away just over a week and yet there was so much post!
One for me from ‘University Hospital Coventry’ my first thought when I saw the envelope was ‘Oh yeah! The MRI scan!’ I had honestly forgotten all about it since receiving the phone call, the one from the vet when we were on our walk in Somerset!

I opened the letter, it was an appointment to see an Ophthalmologist whose name seemed very familiar but I couldn’t place it.

Unfortunately the appointment was whilst we were away! I had missed it! I started to feel very anxious!
My partner read the letter and phoned the number on it. She managed to re-book the appointment for the same week. Apparently the person she spoke to was very understanding and pleasant!

The day of the appointment I really didn’t know what to expect! I was anxious but only the normal anxiety I get when going to any appointment!

I had found out why the Ophthalmologist’s name was familiar, he was a locum optometrist at one of the branches where I worked! Although I had never met him I felt comfortable because we had something In common!

We had the normal ‘chit chat’ that you might have in any appointment, I bought up that he was a locum at the same company that I worked for, which made the appointment feel much ‘lighter’ and less clinical!

It’s not surprising that I only really remember one thing from the appointment!

He spoke to me very relaxed, maybe that’s why I reacted the way I did!

“Your MRI results are back, you will be given an appointment with a neurologist as we think you may have MS. You will need more tests to be certain though”

5th Instalment: The Waiting Game

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Thank you to everyone for patiently waiting for this my 5th instalment!

My aim is to inspire & be inspired, to continue to be strong & continue to be confident!
I may be slow at blogging but that is only due to my MS. As with everything, I’ll get there eventually!

 

5th Instalment: The waiting game

 

Thank goodness those scans were over with! I just had to wait for the results now.

When I next saw my physiotherapist she said she would have a look at the MRI results for my shoulder problem as it was done at the same hospital.
I did think she meant there and then!
When she finished putting all the acupuncture needles in she disappeared which wasn’t unusual!

I was having acupuncture to help with my pain as nothing else Catherine my physio tried was helping.
She always used to disappear when the needles were in place, leaving me to ‘cook’ as she called it, so this was nothing new for her to have left me.

When she returned she said that the MRI results were back and showed that I had a ‘disc bulge at the top of my spine and was very close to touching my spinal cord.
I was to wait to here from my GP for further instructions.

Only a few days passed before I had a phone call from my Drs surgery to say I was to make an appointment to see my GP.
When I saw him he told me exactly the same as what my physiotherapist had told me. He also said that I would be referred to a neuro surgeon for further investigation!

I didn’t ask my GP any questions about the appointment with the Neuro surgeon. Thinking about it now i guess i should of but it frightened me too much to be honest! It wasn’t the word neuro that scared me! It was the ‘surgeon’ part that terrified me!

I tried my best to put it to the back of my mind and continued to concentrate on my work.

I was still to hear about my scan for my eye. I didn’t let this bother me because working in an opticians I knew if it was anything ‘serious’ it would have dealt with already!

It was at this time that I had been told by the regional manager that he could see potential in me and was offering me the position of ‘store trainer’.
What this meant was to travel around all the regional stores training new staff and refreshing existing staff everything that is needed to be known about dispensing optical glasses and contact lenses.

I was also considering taking the appropriate course and exams to become a dispensing optician. So to hear the regional manager offer me this position was extremely flattering and made me realise I was going I the right direction with regards to me career.

 

 

Firstly I would like to apologise for the delay in posting the next part to my journey but I haven’t been at my best so have had to take my time writing! Told you I would get there eventually!

 

 

4th instalment, on to the next…

 

So, the first scan done! On to the next…

Again I dosed myself with ‘Arnica’ and ‘Rescue Remedy’ this time I was taking ‘Rescue Remedy’ for a longer period!

I thought I knew what to expect but the second scan for my eye problem was so much different!

I took my music with me to ‘drown out the noise’ or at least have something else to focus on instead of the panic button I would hold in my hand!

When I passed the CD to the staff. They told me the music wasn’t working and so wouldn’t be able to listen to it! Gulp! Sheer panic set in!

I lay on the scanner bed and was told I had to have a piece of equipment over my head which can only be described as a cage! This is so that u stay in exactly the same place for the entire time in the scanner. The images the consultant wanted to see was of my head and my spine.
Instead of ear phones I had ‘pads’ put on my ears to protect them from the sound of the scanner. They didn’t do much good if I’m honest!

Ok, second time in one of these machines! I can do this! Deep breaths Vicky, deep breaths.

The cool air started to circulate and the noise began. I could feel my heart begin to race and my breathing quicken. My eyes were shut so tight because the noise was so much louder without any earphones or music!
Tears started to fall down my cheeks. It was just too much for me and I ended up pressing the button again!

My partner ended up coming into the room where the machine was. All jewellery had to be taken off, keys and phone left outside because of the magnets that the machine uses.

She stood at the bottom of the scanner bed and put her hand on my shin to comfort me. Every time the scanner processes a new image a different sound starts and a timer starts on the outside of machine. My partner could see how long each scan had left and started tapping the seconds on my shin with her hand, counting down from ten so that I knew how long until the next scan would start.

Although this was really comforting to me the tears still came. I just wanted it to end. I was so uncomfortable and felt trapped!
I needed to do this! If I pressed the button it would only delay it longer!
I started to focus more on my breathing and the tapping ofmy partners

My breathing started to steady and I could feel my whole body starting to relax!

45 minutes later the machine stopped and the scanner bed started to move. It was over!

All I had to do now was wait for the results!

3rd instalment: MRI

You would think I would have been concerned with not knowing what was wrong with my vision but I wasn’t. I was more concerned about the thought of going into the MRI scanner!

I had an accident involving a horse when I was 18 years old and somehow managed to shatter both the Tibia (shin bone) and Fibula (smaller bone next to Tibia) in my right leg! I now have a pin that runs from my knee to my ankle and 2 screws holding it in place!
This was the main concern for me, knowing that an MRI scanner is just basically a giant magnet. I didn’t think that it would mix well with the pin in my leg!

At the same time as I was waiting for the MRI appointment I was also seeing a physiotherapist for a shoulder problem.

I had woken one morning before the issue with my eye and my left shoulder felt as though I had a trapped nerve in it. This can be common for a lot of people so I never thought anything of it, not until it persisted any way!

A couple of months passed and I started to loose a lot of strength in my arm & particularly my hand so I saw my GP and he referred me for physiotherapy. After quite a few sessions with Catherine, my physio, she found that nothing she was trying was helping and requested an MRI.

The appointment for my shoulder MRI came through and was only one week before the MRI for my eye!
Because they were at different hospitals they couldn’t be done at the same time.

Now I had the worry of 2 MRI’s and believe me I am a worrier!

MRI number one!
Because my family used to own a health food shop I knew the right things to take for anxiety!
I dosed my self with Arnica when I knew my appointment date and then on the day of the scan I was taking Rescue Remedy as well!

I had a chat with the staff there about the pin in my leg and was told because it has been in for a long time it shouldn’t be going anywhere.
I didn’t take much comfort with that purely because the word “shouldn’t” is questionable!

I knew you could take your own music to listen to so I went armed with ‘Kings Of Leon’ hoping it would be loud enough to drown out the noise of the scanner! Wishful thinking!

If you have never been inside an MRI scanner before, it’s just like a tunnel with not even enough room to adjust your position! If you have an itch on your nose you can forget about scratching it because one, you won’t be able to reach and two, your not allowed to move otherwise the images will be blurred and you have to stay in longer!

Before they send you into the machine they give you a ‘panic button’ just incase you need to come out.

I lay flat on the scanner bed, ear phones on, music paying and alarm in hand ready to go, deep breaths Vicky, deep breaths!
Five minutes into it and I pressed the panic button! Wimp or not I hated it! I carried on though as I was told through the ear phones that it wouldn’t take much longer and thankfully it didn’t!

When I came out of the scanner I was shaking!
If you don’t like loud noises or tight spaces it really isn’t the best place to be!

All I could think was ‘I have to do that all over again next week’!

And so it begins!

MeSsy days!, , , ,

So this is how it all began, my story of my MS. What my symptoms were, through to diagnosis, and up to now!

 

2010 turned out to be a very tough year!

In the March of 2010 myself & my partner where in discussions of selling our house & moving, we had seen a house that we had fallen in love with & put ours on the market with the intention of buying the one we had seen.

It was in this same month that I started to have problems with my vision.
It started in my right eye. In my outer peripheral vision I was seeing flashing lights, the best way I can describe it was like the flashing from a sparkler on bonfire night!
I thought I was getting a migraine, I have had these before so I knew what to expect… A violent headache followed by sickness. This never followed though! Instead the flashing continued and I started to get pain in my eye.

Luckily at the time I worked as an optical assistant and so the next day I asked the optician at work to check my eye. She said she could see ‘something’ but didn’t have the equipment to see properly so referred me to the eye hospital. Due to it not being an emergency I didn’t go straight away, instead I waited until the next day (Sunday) and went to Birmingham eye hospital. This hospital is further away for us than the eye casualty in Coventry but they were closed on a Sunday!

Sunday morning, we were up at the crack of dawn and made our way over to Birmingham. We wanted to be there as early as possible so I could be seen quickly.
I had my eyes dilated, that’s painful enough even when ur eye doesn’t already hurt! Again the ophthalmologist could see something but didn’t tell me what. He said he wanted me to have an MRI before he would know for sure. I was referred for this and sent home.

I made my way to work the next day, pain still the same except I noticed everything seemed so much brighter & blurred!

When I got into work the pain and light sensitivity was getting much worse and I ended up having to call a paramedic because it was so bad! 

When the paramedic arrived he decided it would be best if I got seen at A&E straight away and took me to hospital.
I phoned my partner to let her know and she met me at the local hospital.
Because they don’t have an eye specialist at local hospital, a dr had a brief look at my eyes. It became apparent when he was looking at my eyes that I had lost vision I my right outer peripheral, the same area I was getting the flashing lights!
I was told I needed to go to the eye casualty in Coventry.

When I arrived there I had all the same tests again that I’d had at Birmingham and was told the same as I was there but this time I was to be booked in for a field test to check my peripheral vision.
It was about 3 weeks later by the time I had done 2 field tests and was back in for the results. They showed a definite loss of vision so it was then decided I should have an MRI scan.