The last 7 days has seen 5 friends from the Chiari forum attend appointments for decompression surgery. Two of them have already been sent home after a very successful surgery and a very fast initial recovery proving just how effective that having a positive attitude can really help. Two unfortunately have had their surgery postponed until later in the year and early in the new year, yet remain positive. Another has had a troublesome time with their own surgery, but today I hear that they have made lots of progress over the last 24 hours and are being told that they can contemplate going home.

So all in all a very positive week so far as surgery goes proving that a positive attitude and great support from friends and family has a dramatic effect upon how your surgery can go. Decompression surgery does not have to be a scary experience, nor does it have to mean an extended stay in hospital.

I have had my own Chiari related positive experience this week too. For those that are aware of my own situation, please allow me to briefly explain for those that are reading this for the first time.

I had decompression surgery last April to alleviate symptoms from my 12mm herniation and Syrinx from C1 to C3 (may have been larger at the time of the surgery as my MRI was in the previous November and my symptoms worsened greatly after the new year before surgery in April)

My surgery experience was very positive, much like the two above and I can safely say that my Chiari related symptoms lessened immediately, but was left with symptoms more indicative of Syringomyelia, which unfortunately worsened gradually over the next few months.

I had a follow up appointment 3 months after surgery, and I have to say at the time I did feel quite good. I was fatigued, I had a few aches and pains and reduced independent mobility, but I felt so much better in respect to how I felt before surgery. My appointment was just a “ticking the boxes” kind of appointment where I was in withy my NS for about 10 minutes.

My symptoms began to worsen, and I became worried, so I brought my next appointment forward to the end of September rather than December. My NS had been brilliant pre-surgery and my surgery was went very well, however, my last appointment with my old NS was less than satisfactory. To say it was a waste of time would be an understatement, he basically told me that he was retiring and couldn’t wait, he had no time, nor interest in listening to my explanation of my symptoms, cut me short, swore and swaggered (and yes, in front of my wife) and was enveloped in his own euphoria regarding his imminent deserved retirement. He fobbed me off with a referral to a physio / rehabilitation appointment, and had not even heard half of my symptoms. He then dismissed me tapping his watch and telling me that he had another appointment to attend to. He shook my hand, ushered me from the office and totally ignored my wife.

It took over a month to get his letter and around 7 weeks for the physio referral to come through. He explained to my GP that there was nothing further that he could do for me and it was now in the hands of a rehabilitation service. He also told my GP that he had discussed my symptoms at length and had examined me. He basically lied about how the appointment went. He also drew up a short letter that I had asked him to do for me to send to the DWP. He basically wrote the letter explaining that I had indeed had treatment for Chiari and Syrinomyelia and that it can be a chronic condition, yet I was only showing “mild” symptoms!!!!

Anyway, I felt like complaining, but he was retiring anyway, so what was the use.

I decided to go for a second opinion and went to my GP to get a referral. I had a choice of going back to Manchester or I also had the option of going to Walton to see the specialist team there at The Walton Centre. With the support of the forum, I decided to opt for Walton. In the mean time I also got a letter from Manchester informing me that I had an appointment with my last NS replacement in January, but I had already had an appointment booked for the beginning of December at Walton.

So I plumped for going to Walton to see how it went.

Anyway, back to this week.

I had my appointment yesterday at Walton. I was told at the reception desk that I was to speak to a Neurosurgeon called Miss Burns. Now, she is the only NS that I have never heard of at Walton. I was a little disappointed that I was not being seen by the NS’s that I have heard so much about from Walton namely Messers Malluci, Broadbelt et al. However, I went through the door with an open mind.

My wife and I were greeted with a very firm and engaging handshake from a young looking Irish Senior Registrar called Mr Alan Hewitt. He immediately set us “both” at ease and asked us both for a brief explanation of that I had already been through with regards to my treatment. He also explained that he understood that I had come to Walton to get a second opinion and that he totally understood and that it was normal practice.

I noticed that he had a file, but I also noticed that all he had in it was the letters that my old NS had sent to my GP, therefore he had a very restricted amount of information. He didn't have any of my surgical notes nor copies of my previous MRI scans. So we offered to show him the picture of my first MRI that is still on my wife's mobile phone. He looked at it quickly and acknowledged the appearance of the syrinx and the obvious Chiari herniation.

I explained that I had had a more recent MRI and that the syrinx was the same length overall but had shrunk in mass since surgery.

I went through my symptoms including permanent pain, excessive fatigue, painful sensations in my left foot, clawing of my feet and hands and the worsening dexterity in my hands, muscle loss, weak joints and muscles et al.

He then went through some basic Neuro tests and concluded that I have mixed up reactions towards applied sharp and soft items on my skin. Probably due to residual nerve damage or through mixed up signals as my syrinx changes, some nerve tissue that has been “stunned” rather than damaged beyond repair etc.

He did say that they didn't necessarily need my old surgery notes and previous MRI scans, which to be honest I found rather odd. They did say that it couldn't hurt having them, but that they were in no rush to get them or look at them, as they had enough information already.

He went through basic explanations of what Chiari and Syringomyelia is and how it applied to me. I listened intently, although I do know from my own research a fair bit already. I am glad that I did as I learned a lot more from the his explanation. It seems that with a Syrinx, you can see improvement after surgery because sometimes cells are “stunned” rather than destroyed, which means that you can actually see improvement. Great news for some of us!"

Anyway, he said that they were not just going to write me off with physio, but because of my progressive symptoms, that they were prepared to go ahead with a full body MRI to check for other complications such as a tethered cord and the possibility of Hydrocephalus forming. The latter being unlikely as it may have showed up on my other MRI’s, however it seems that it can come and go in mild forms.

Not only would just one NS be looking at my case, but it is usual practice at Walton for ALL of the NS’s to get involved in a meeting to discuss each case. Therefore patients at Walton benefit from the experience and time of other NS’s. Great news as far as I am concerned, whereas in Manchester my fate was left to just one man, and one man with a poor attitude as is has been proved.

They have already applied for an MRI appointment for me which should happen within the next 6 weeks and have made a strategic appointment for me to review it within a matter of weeks. Then to go through and discuss the appropriate treatment.

It all sounds very positive and a mile away from where I was a few months ago. I feel vindicated again, that it isn’t again just inside my own head or that someone feels that I am malingering or hunting for attention. I have symptoms, and they have been recognised.

I guess it goes to prove that once you are diagnosed and treated that struggle doesn’t just stop there, and that someone who has generally a lot of experience with this condition can still fall foul of either a doctor having a bad day or someone not having the time or energy to allow you the right treatment.

What it definitely proves, is that if you have a positive attitude and stick to your guns than you can get the right result.