A week or so ago I saw a neurosurgeon regarding the awful pain my back is causing me that also radiates into my legs on a bad day. I decided to pay and see him privately so I avoided the obligatory physio sessions that you have to have on the NHS before you get anywhere near a neurosurgeon.
My back has caused me problems all my life. Since the age of 16 I have herniated discs. I had to sit my a-levels wearing a soft collar because the week before the exams started I had to push my broken down car out of the way of traffic. Whilst pushing the car I slipped and that was all that was needed to provide me with a few weeks of horrendous pain. Not great when all of the exams were at least 2 hours long and would be sat at a desk. My doctor at the time provided the exam boards with a note to give me special consideration as I was answering questions through a haze of painkilling medications and I was also allowed to be seated at the back so that at regular intervals I could get up and move around without disturbing the other students.
In 1999 I injured my back severely during a cool down after an exercise class. Again I had herniated a disc and was in severe pain for several weeks. Unfortunately I worked for probably the most unsympathetic boss ever who despite being informed of my injury still expected me to charge around here there and everywhere with gusto.
This back injury had lasting effects – the side of my left foot went numb and from then on I have never been able to ride a bike without my nether regions going numb. Thats probably too much information for some of you but I like to be completely honest. When I saw a gp regarding the bike riding issues I was laughed out of the surgery. I recently discussed this with my current gp, one of the good guys and he was flabbergasted that such an issue would be treated in this manner. He had no issue at all sending me for a private referral and understood my reluctance to be treated by the same physio I had a few years earlier, who claimed to be a specialist with EDS but had no understanding of autonomic nervous system issues.
I had to pay £185 for the privilege of seeing my neurosurgeon, which in the world of private appointments is small change. The most I have ever paid was £430 for a private MRI and the most I have spent on a private consultant is £300. My eyes are watering as I tot up the amount I have spent outside the NHS since 2007 trying to find answers for my health issues. If only I had known I would find my own answers through Google! However it was still a battle trying to get referred for the appropriate tests on the NHS.
The neurosurgeon I saw works out of a tiny clinic in a village less than 15 minutes away from where we live. Travel is a nightmare for me so to avoid having to go into the city was a bonus. Parking was easy unlike the large hospital where if you arrive after 9am your chances of getting a disabled parking spot are virtually zero.
The Neurosurgeon greeted us at reception, he seemed very hands on unlike all the other consultants I have seen either on the NHS. All the other consultants I have seen regardless of who they work for seem to send someone else out to fetch their patients. My NHS hospital consultant always comes out and gets me, I find that is a much more approachable way of doing things instead of immediately creating a barrier between patient and doctor. It was a long walk between reception and his office so I was immediately regretting using crutches instead of my wheelchair. The building itself had seemed quite small on the outside, inside however it was labyrinth like.
We reached a tiny little room at the end of a long corridor, where immediately the doctor took our coats and hung them up on the back of the door. Inside was a desk 2 chairs and an examination bed and the obligatory model of the human spine!
It was nice to know that the doctor knew my own gp on a personal level and he also had the same air of familiarity about him. I was asked the question that irritates me the most “do you work?” and I explained that I hadn’t since 2008 and the reasons why. For more info on my feelings related to that question please go to the blog post “Do you work?” at blogger or WordPress .
We then had a quick run through of my symptoms and I was asked to gauge out of 100 my back pain assigning one percentage to my leg pain and one percentage to my back pain. Initially due to my issue with numbers in general due to my dyscalculia I didnt get what he meant. Which made me look a wee bit silly. So bless him he explained it in a clearer way for me. “Eureka” I’ve got it! I explained the majority of my pain was felt in my legs I assigned 70% to this and then gave the remaining 30% to my back. Now although I wrote in my post about B12 deficiency WordPress / Blogger that my leg pain reduced after my first B12 injection it hasnt gone and on a bad day it is still unbearable. The bad days have no correlation to my loading doses and my left foot is still numb. I know its early days with the B12 treatment as you continue reading you will understand that there is an issue with my back and that is causing some of the pain in my legs.
Once he had gone through the various questions he needed to ask me I had to be examined. Luckily it was just a case of removing my shoes and my top not exactly a comfortable experience. He asked me to point on my spine where I felt the pain. He then poked and prodded my back asking “does this hurt?” as I squealed in pain and tried to peel myself from the ceiling. He then asked me to bend forward and touch my toes. Now looks can be deceiving, I am not the trimmest of specimens and logic would say I would be lucky to be able to reach my knees. However due to the Ehlers Danlos Syndrome I placed the palms of my hands flat on the floor. The dr responded with “blimey you are bendy!”
I am sure many doctors see the diagnosis of EDS and don’t quite believe how flexible we are, especially if like me you are a little on the large side. I am incredibly flexible and my back is probably the bendiest bit which is why it gives me the most trouble. He then took me through the Beighton Scale, almost as if to re-confirm the diagnosis. As I know what the scale is I threw in a few extras for free just to freak him out! My Beighton scale has been upped now from a 7/9 to a 9/9 as previous doctors didnt think my elbows were hypermobile. This doctor did but it just goes to show how subjective the scale is and how it should really be measured with instruments rather than the naked eye.
Having “proved” once again that I do have EDS I was then made to lie on the examination couch. I had to do various exercises like push his hand away with my big toe and then with my feet. All went really well until I had to elevate my legs. The right one went up so far and so quickly if I had not been careful I could have bashed myself in the face. Its not something I ever do at home so I wasn’t expecting the left leg to be any different. Bizarrely I only managed to lift it a little before it became stuck and would move no further. The doctor must’ve seen the look on my face because he asked if I was in pain. The answer was no, my face was displaying sheer panic. It just wouldn’t move any further and was stuck. It caused no pain at all. Its very hard when you are used to your limbs being elastic and they suddenly aren’t the same anymore.
Examination complete he asked me to get off the examination couch and get dressed. Thats where the fun started! When I get up from a lying position I have always found it easier to roll onto my side and lift myself up. Only my back was having none of it and my arms werent much use either. I lay their stranded like a beached whale. He offered to help but I declined embarrassed that I couldn’t do the simple task of sitting up. After what seemed like an eternity I made it to a seated position. This was still too quick for my body and I ended up having a pre-syncopal episode.
Once I finally made it back to the chair he took out the model of the spine and went through what he believed was wrong. Apparently I am showing the classic signs of Facet joint arthritis. At 40 I am a little young to have this condition (its mainly found in people over 45 who have been athletes, dancers or done hard manual labour) but EDS can cause early onset arthritis. I suspect I have a touch of arthritis in my fingers also as they can be very stiff and painful on waking. He then went through my back / leg symptoms and said they were all pointing to a nerve root compression at S1. The fact I couldn’t lift my leg was a textbook symptom. Luckily all my reflexes are intact, my mum who has the same problems as me is much worse having lost the reflexes in her leg and therefore requiring extensive surgery.
He then went through the various treatment options however we will know more when I have an MRI scan later this week. I will be booking an appointment to see him once its been done, thats another £130 privately. I could be waiting several months on the NHS for an appointment to do exactly the same thing.He will then go through the results of the MRI scan with me.
Its really stupid but I am terrified that the MRI will show nothing at all and I will be accused of making up all my symptoms. Its a pretty expensive way of getting attention but thats not what is going on. My phobia about doctors is just kicking in and although I know I am showing textbook symptoms I can’t shake the element of doubt rattling around my head.
My options are depending on how bad the damage is are injections or a nerve root decompression operation. The nerve root may need to be decompressed on both sides of the vertebrae as I am developing symptoms on my right side also when its a bad day. The doctor informed me an operation like this doesn’t come without risks and he would go through them at a later date. He is sure however should I have an operation the pain will be gone when I come around from the general anaesthetic.
My operation would be carried out on the NHS, I just don’t have the funds to pay for it myself. The surgeon also works for the NHS and would do the operation himself rather than pass me off to another surgeon. I told him if I had the operation he would be the only one doing it. I asked my gp when he referred me to this surgeon who he would have treat him. He answered this neurosurgeon, I trust my gp’s judgement.
At the end of my appointment the Neurosurgeon warned me that after the examination I would be in pain, he wasn’t wrong. I ended up having a flare that lasted three days (where the pain was close to being a 10/10 on the pain scale) and it’s taken until today (15 days later) for it to completely settle down. When I say settle down I don’t mean zero pain, I mean a pain that I can deal with and that goes away with additional painkillers should I need them.
Since the examination I have found that there are now things that are acting as triggers and exacerbating the pain. Bending forward is causing a lot of back pain and I am locking up more frequently when I try to straighten up. Maybe its just because I am more aware of the issues with my back where as before I adopted the head in the sand technique who knows?
Of course I will update you once I have had the scan…….
Willow keeping company whilst I recovered in bed after the appointment.