After the injection...

*switch on whine mode* My arm feels like I've been thumped, very hard.. it hurts. *switch off whine mode*

Vaccine located!

We *finally* managed to locate the vaccine! Yesterday we got a phone call advising us that it was to be found in the Floriana Health Centre Immunisation Clinic. Since they open at 8am, we decided to go there bright and early at 730am, in order to find parking.

Anyway, Mandy turned into what she called 'Attack Mode' and took charge of the proceedings without much ado. I was, of course, an optional extra hanger-on looking relatively ridiculous at the back. Anyway, we went to the office, only to be told that the injection is of a different form, the one related to, amongst other things, Yellow Fever. Now this relatively unpleasant disease is unlikely to exist in Manchester, and in any case I needed it for an additional nasty little critters known as pneumococci (as a matter of fact, the meningitis bug is caused by pneumococcus but the inoculation also covers for another 23). Anyway, the lady concerned kindly called St. Luke's Pharmacy, and lo and behold, they told us that they had the very vaccine I needed, i.e. Pneumovax II. I was almost stupefied as they had told us that they didn't have it just 1 week ago.

We got to St. Luke's, luckily parking inside the interior car park (remember, today is a work day!) and went to the Pharmacy. Oh, not so fast, I had to obtain a Maltese doctor's prescription. I was slightly cross eyed at this point - I actually saw the vial and was straining not to grab it out of the pharmacist's hand and gallop away with it. We went to the Casualty Department, and found a doctor who gave us the prescription.

We then ran back to the pharmacy.. only to be told we had to pay for it. Obviously, it would be too difficult to be able to pay for it there and there, so we had to find the billing department. We duly paid (Lm10.50 - EUR 24.50, £16.70 or $31.25).

We then returned and picked up the vial. Now I have to go to my GP who has to inject it for me. As luck would have it, today I have a course in the afternoon so I can't take it with me - Mandy had to take it to her work and keep it there for me.

Vaccine Unavailable!

Just my luck.. the vaccine that I need, Pneumovax II, which is used against the very minimal increased risk of meningitis, is not available in Malta and is not imported as the cost of registration makes importing this vaccine economically unfeasible to the importer.

The alternative which is for children, Prevenar, is available on the market but I doubt it's suitable for me. Anyway I got in touch with the MRI to see what I can do about this, and am trying to find alternate channels to obtain this injection.

Further update

I was looking back at my very first post, and couldn't but feel that I was slightly naive and unprepared for what was to come - the strain it put on us all, especially the past four months, waiting to see if I could qualify for the operation or not.

If any reader is at the very first stage of a cochlear implant process, do not lose heart. It's difficult, trying and fraught with pitfalls but I believe the end result is very much worth it. I came out of this all a stronger, wiser person and much better informed about what the surgery and subsequent rehabilitation involves.

My suggestions to prospective implantees follow:

Be informed. Research, research and research. Look up the pros and cons of all of the implants. Read blogs of implantees and other prospective implantees to gauge what the journey entails. Contact them (you can contact me at i_carabott at yahoo dot com if you wish) and ask for advice and assistance.

Write to all of the manufacturers requesting brochures. Ignore the sales crap and compare the different facilities you want. Some people put battery life first (perfectly acceptable, as batteries are expensive), others aesthetics, others prefer accessories that come with the implant or that are available on the market.

Be patient. In this case, patience is not a virtue but a requirement.

Be ready for some hefty costs. Even if the implant is supplied for free by your health authority you obviously have to take time off work, prepare for travelling costs (and obviously accomodation)

Be mentally prepared. It is surgery after all, even though it's quite straightforward nowadays.

Don't give up. I have at times wondered if I would ever manage to get this far, let alone to the surgery and the eventual switch on. It's difficult, trust me - even more difficult than you think.

Be realistic. This is not a cure for deafness any more than wearing spectacles is a cure for shortsightedness. You will still be deaf - if anything even deafer as the residual hearing you might have will probably be destroyed by the insertion of the electrodes.

Anyway, I intend to update this blog a little more frequently than I have in the past few months. I had quasi purposely neglected it a bit - I wanted to put the implant on the backburner just in case I was refused. Now that I've accepted everything has moved to the forefront again, so I think I've no excuse now!

As it is, I've something minor to report - today I will be taking the very first step towards the actual cochlear implant surgery that I'm due for. I'm to have a 23-valent pneumoccal vaccination (Pneumovax II) to minimise the risk of meningitis. An unproved link between cochlear implants and meningitis has been found so as a precaution people are inocculated against it at least 4 weeks prior to surgery. Seeing that I might just get called up out of the blue for surgery (unlikely, but possible) I thought I'd get this done soonest. So off I am to my GP for a needle in my arm. Not fun, call me chicken but I don't like needles!

Surgery details

I thought I'd put this information I found on the British Cochlear Implant Group Website, which describes the operation details somewhat.

The Operation
Before the operation, you will be given a general anaesthetic. After which the hair behind the ear is shaved in an area about four inches from your hairline. The operation takes place in theatre and will take between two and five hours to complete, but normally, in straightforward cases, it will take approximately two hours. You will wake up with a large bandage (like a turban) on your head. 24 - 48 hours later this will be changed for a small dressing. There will be a pack in your ear canal which should be left for a week to protect the wound. A follow up surgery appointment in Outpatients usually takes place about one week after the operation where the ear pack is removed and the scar is checked.

Recovery
Recovery after the operation is variable but most patients feel better very quickly. Most patients do not suffer significant pain after the operation. You are required to check into the ward the day before surgery and you will remain in hospital for one to two nights after the surgery. We recommend that you take two weeks rest at home. Once your hair has grown back and your scar has healed, the only evidence of the operation will be a small bump just behind the ear.

Risks and side effects
A cochlear implant operation carries the same slight risk as other ear surgery. You should, however, be aware of the following possible side effects:-
The risks associated with having a general anaesthetic
Temporary dizziness and/or temporary disturbance of balance
Temporary increase in tinnitus
Numbness in area of scar
Change in taste sensation
A risk of infection
Facial nerve bruising: This nerve running near the site of surgery is carefully monitored throughout the operation. This ensures that bruising of the facial nerve is highly unlikely.
The possibility of implant breakdown in the future, in which case a further operation would be necessary to replace it.
Because the operation is relatively new, the long term effects of electrical stimulation are not known. The amount of electricity involved however, is minimal and during the past fifteen years in which people have received cochlear implants there have been no indications of long term damage.
If you are particularly concerned about any of the above risks you should discuss them with one of the doctors.

Post operation
While you are on the ward one of the nursing staff will show you how to wash your face whilst at the same time protecting the scar area. You are encouraged to wait a minimum of two weeks after surgery before washing your hair. You need to take care to keep the wound dry and be very gentle with that area for the first month. After the first month, treat the wound as normal and if you are a keen swimmer you can restart then. Flying should be avoided for four weeks following surgery.
If required you will be given painkillers on the ward and some to take home.
The surgeon will generally use dissolvable stitches, which do not need to be removed. The area around the scar, including part of your ear, will be numb and sensation will slowly return over a period of six months. However, this may never return fully to normal. You may also have some swelling around your ear, which should settle within the first two to three weeks.

Take care of yourself
We advise you to avoid all activities that might cause a blow to the head, e.g. rugby, football and boxing as these could potentially cause damage to the implant. Also, we would advise against doing such activities as scuba diving as the pressure changes involved in deep water diving could damage the implant.

From another source for operation details:

Prior to Surgery

The implant candidate is anesthetized with a general anesthesia.

Preparing for Operation

Some hair is shaved off where the surgery will be done. This is usually a small amount of hair. The area shaved is behind the ear.

Making the Cut

An incision is made and the skin and tissue flap is lifted so that the surgeon can drill into the skull bone behind the ear. A receiver is placed into the drilled-out area and an electrode array is inserted into the cochlea.

Closing Up

The surgical area is closed up with stitches (a small permanent scar may result) and the head is bandaged.

After Surgery

Depending on the length of the surgery and other factors, the patient may either be sent home shortly after surgery or have to stay in the hospital for a short while.

Recovery Period

During the recuperation from the surgery, there may be minimal side effects such as temporary swelling. Side effects are minor if they do occur and generally temporary: pain, changes in taste, dizziness, inflammation, bleeding, etc.

The results..

Hi everyone, we're back from Manchester. To say we had a nerve wracking time is quite an understatement.. but anyway.. in a nutshell, I've been approved for the Cochlear Implant :)

On Tuesday we arrived in a cloudy Manchester (wonders never cease).. and promptly went to the Arndale Centre (ditto regarding wonders, ceasing!). We took some time to see the sights as it had been some time since I'd been to Manchester (OK I'd been in January but didn't have the time to sight see!). We got to see the Town Hall (lovely), the Cathedral (Mandy got bored there!) and also had a run around with Maria at Wilslow Park (nice, small park close to our hotel).

Wednesday dawned and we went to the MRI for the first appointment. My first one was a CT scan (which is a sort of hi resolution X Ray). This was subsequently followed by an MRI. I was quite apprehensive of this scan, as I am slightly claustrophobic and you are requested to stay immobile for the time that the scan takes place. Anyway, I sat down and was slid into this tube, and suddenly a very loud clattering started and the scan commenced. I started feeling sort of small electric shocks in my fingers which was uncomfortable but not painful. During the process, I played some mental games Mandy came up with to get over with the claustrophobia. She suggested that I think of 10 ways for us to become more environmentally friendly, a manner we could paint our house in different colours, and a 4 course meal with a vegetarian starter, Maltese inclined main course and a dessert devoid of chocolate (hard for her, that one). I was so engrossed in the menu I was coming up with that I was quite indignant when they dragged me out as I hadn't finished the full menu! Once that was done, I was given an appointment for the next day to review the results.

9am the next morning, we were at the ENT department at the Manchester Royal Infirmary. My heart sank when I was told the scans would take a few more minutes to be completed, and was asked to return in an hour or two. My nerves were shredding, we went to the Manchester Museum close by in a vain attempt to keep our minds occupied. At 1035 we could bear it no longer and went back to the hospital. We were met by the secretary responsible for cochlear implants who told us that the surgeons had seen the scans and that were clear. At first I understood this to mean that they were clear enough to be interpreted, but then Mandy turned to me with joy in her face and she told me that the scans were clear, that I did have some otosclerosis but that the surgeon found no problem to operate.

My feelings at that point were undescribable.. I felt joy, relief and, for some reason, apprehension, somewhat like a child might feel when given a treasured toy and is afraid that it would be taken off them. From there I was walking on clouds but at the same time I was not as elated as I thought I would be. Maybe because the reality of surgery started to loom on the horizon - hospitals, anaesthetic, memories of my previous ear surgery and the horrible nausea and vertigo that came with it, the thought of a few weeks not hearing a thing... well, I was quite happy but not over the moon as one would expect. Anyway, we were scheduled for an appointment the next day with the head of the Cochlear Implant department. As luck would have it the appointment was at 3pm which was too late for us to be able to get out of Manchester to do anything much, so we decided to go to Bramall Hall which is a few miles out of Manchester (7.9 miles according to Google Maps). Of course, our very helpful bus driver dropped us off 2 miles away from the ruddy building, so we had to leg it, pushing a bloody heavy pushchair, with Maria's assorted paraphenalia (including her potty for wee wee breaks!), not having the foggiest idea where we were. We finally found the place and it's absolutely lovely, but the long walk spoilt it a bit (try pushing a pushchair uphill, in the sun, for 2 miles before making any snide comments!!!) and in any case we wanted to make sure we were on time for the appointment so we made our way back quite quickly.

Her Majesty Maria was snoring away happily during this Livingstonian expedition and only woke up when we happened to walk past a playing field. Slides were duly slid and swings were duly swung, tantrums duly thrown when we left, then we caught a train from the charming town of Cheadle Hulme to Piccadilly.

We then proceeded to the University of Manchester to meet up with Deborah - who is a wonderful, warm person responsible for the Cochlear Implant programme. She explained all the details for me and confirmed that they were ready to go ahead with the surgery for me. Then it sort of sunk in that it was going ahead. We discussed the technicalities of the operation, and decided to go for my left ear which is my better ear (or should it be my less bad ear?!). Moreover, based upon my history, my ear 'geography' and my requirements, they suggested I go for the Cochlear Nucleus. I personally concurred with this because apart from the fact that Cochlear is by far the market leader, I'm not very happy with the fact that there were 3 recalls from Advanced Bionics, and I wasn't really convinced by the Med-El. I went for a beige BTE processor (boring I know!) and a brown headpiece to match my hair.

Anyway in a nutshell - the surgery should take place in September, the surgeon will be Mr Saeed.

Phew! Quite a blog that!