6month Update

Long time, no read 😉

Nothing much has happened since the last update. I have become stronger and I can get through my day without problems. I can go for 2 hour walks (which I couldn’t do anymore before the operation). I can do the weekly shopping without having to lie down (which was also not possible anymore before the operation). I can go to work and work 8-10 hours (this was tough though, I really felt every hour after the 6th.)

At 3months post op I started working again. I started the first month with 3hours a day, this went up to 4hours and then up to 6 hours. Towards the end of the 3 month integration I was working up to 10 hours despite not having to (perks of a PhD) and I really felt those. I noticed that anything longer than 6hours got quite tough and I had to take it easy after work at home and that anything past 8hours (which I thankfully only did a couple of times) was really difficult and I had to lie down when I got home. Apart from that I was doing well.

About two weeks ago I went to my 6month check up.
I had another X-ray done…. That’s number 20 in the last 6months!!!
(If you count all the intraoperative X-rays). The doctor was really happy with how it looked. The bone material that was placed on my spine and around the screws is visibly calcified. They shouldn’t move now. All good.
He said I can start jogging again, I can go dancing, cycling and I can go horse riding…. He just said I shouldn’t fall off the horse. Can’t promise that!

Everything being in place and tight also means I have the all clear to go into rehabilitation. That should start in mid May and will be three weeks of intense physiotherapist and the gym along with some swimming. It’s almost 6hours a day of exercise….. I will be beat!! It should give me a good start into muscle building though.
One thing the doctor did say is that I have very little muscle in my upper back and practically none over my iliosacral joints. And that could be causing some pain.

I have been pretty much pain free since the operation. I was completely pain free for the first 4 months! About then when I started doing more at work the arthritic pain started again (the non fused area under the fusion had arthritis before the op already). It’s not as bad as it was before because it’s now just one small part that is causing problems and not 3/4 of my spine. It’s also something I can deal with and I’d be happy if it doesn’t get worse. It is also something that I should be able to minimise, if not even get rid of, by exercising and building muscle to supporter that area. I know others who have developed arthritis because of the fusion and have successfully dealt with the pain by physiotherapy so I’m quite hopeful. Time will tell.

But I am very happy that it has gone so well and that I can now start my new life to the full.

5 week update

Not to worry, the posts will start getting a lot shorter now 🙂

The operation is now 5 weeks ago (que Michael Bublé) and I’m feeeeeling goooood.

I still get tired quickly and the skin on my back, especially around the scar, is very sensitive. I’m quite happy though because the main pain under the fusion is pretty much gone and there is no more pain that pulls into my leg! Yay. My body seems to have come to terms with the new position!

I don’t take any pain meds regularly anymore (!) only when I feel I need them. I do still take the muscle relaxant after getting up in the morning because I wake up very stiff (hahaha) and they help to relax my muscles for the day.
As my body adjusts to its new self, sleeping is getting better. I can now lie on my stomach for a short while. So now I have three sleeping positions, on the back, on the stomach and on the right side. Left side is still too weird.

The little open part on my back is closing up nicely. The scab seems to be falling off in places. It’s defiantly closed underneath. The rest of the scar looks good too. I’ll show a pic soon 🙂

We now have my mountain bike in the sitting room!! It’s on one of those training cycle stands so that I can cycle indoors. I’m not allowed to cycle outdoors because I could fall but I am allowed cycle indoors on a stable home trainer type bicycle. That’s pretty exhausting! 5mins and I feel like I ran a marathon!

We go for short walks almost everyday (weather permitting). I even went food shopping the other day! Had to leave the shop earlier though and sit in the car. That is still really really exhausting!

I can also do small amounts of washing up dishes! It’s something that I couldn’t really do before because standing straight so long hurt….. Now it doesn’t! So that part is already better than before 🙂

So all in all, it’s week 5 and I’m doing really well and I feel good 🙂

Oh and I seem to have grown between 5-7cm depending on what time of day I was measured pre-operation….. So I’m A LOT taller than before 🙂
I used to be 168 during the day…. 169 in the mornings and 170 if I stretched for the measurement.
I’m now 175cm!!!!

From brezn to laugenstange

Firstly, I’d like to apologise for the delay in updating this blog. Secondly, I’d like to apologise for the length of this post. I promise future posts will be shorter.

Saying that a lot has happened is probably a bit of an understatement. To summarise; my back is straight, I am alive, recovery is not fun and I can’t reach my toes.

Due to the time that has passed and the amount of drugs I was on my memory isn’t the best regarding details of the last three weeks. I will however try and string it together. And yes, there are pictures. Scary ones!

Friday morning I was given some anti-anxiety tablets to calm down. I thought I was pretty calm but these pills made it all even better. I didn’t care. I felt nothing. I couldn’t care less what was about to happen to me. I was wheeled to the operating area. I was in a pre-op preparation room. The anaesthesiologist there, Sergio from Colombia (no Katrin, I’m not kidding!), was chatting to me. We talked about language and how he had learned German in only a few months. I got a cannula in my right hand. I had an EKG there too, just incase. I was asked a couple questions regarding my medical history. I was asked about my reflux again. Said it’s fine if I take the tablet. Just incase they had a nurse stand by with a vacu-pump and they tilted the bed head up. I was given oxygen to breathe for a few minutes then the doc put something in my hand and I was told to relax…. I don’t remember anymore.

I woke up at some point in intensive care with my mam beside me. I remember getting something into my hand that made my head swim. I think I said “what’s in this stuff? This stuff is great”. Something to that effect. Mam took a photo. I had an oxygen tube in my nose. I remember trying to actively breathe through my nose because I automatically shut off my nose when there’s something in it. My boyfriend came in too. I remember mam asking the nurse if it’s ok if my fiancé came in late after 7. She was afraid they wouldn’t let him in if he was just my boyfriend. Haha. No we are not engaged!
I was so thirsty it was unbelievable! I was so afraid of throwing up that for most of the evening I only just wet my mouth and didn’t dare swallow much water. I slowly increased the amounts until I was guzzling it like it was going out of fashion.
During that night I barely slept. The blood pressure cuffs of everyone in the room went off every hour on the hour! There was an older lady who ended up vomiting. The guy beside me was there for observatIon because he was electrocuted! I remember the nurses and doctors talking to each other at the foot of the bed when they were doing rounds or changing shifts. Seemingly I lost 700ml blood during the op. That’s all I heard. I asked if I was able to turn around on to my side. They said the implant was stable and that I could lie on my side if I wanted.
I had a morphine drip right onto my spine. I pressed the button but felt nothing get better. Didn’t care. Kept pressing it all night! A friend told me they give you the tablets afterwards based on the amount of morphine you get from the drip so I pressed that button as often as I could!!!! They even upped the dosage at some point but I still didn’t notice anything get better when I pressed the button. After it was gone the only difference I noticed was that I noticed the scar sometimes but that was it. I got some more stuff in my hand at some point against pain and fell asleep from it. I asked for more when I woke up. I was given some oral morphine to drink, it was disgusting. I got so sick, I felt like vomiting. Called the nurse again. Got something against that. Fell asleep again.
I remember turning around and finding it rather comfortable. Because I lay on my right side I cut circulation to that arm slightly. Usually not a problem but I had an intra-arterial measurement thingy in my right arm that caused the monitor to beep until a nurse came when I lay on my right arm. My drip was also empty at some point and that gave an alarm. The others in the room also constantly had one alarm or other go off. It was a very very very very long night!!! Possibly the longest night of my life!
The following morning I was assisted in washing my face and brushing my teeth. Then breakfast…. Vanilla pudding.
Here’s me in intensive care just after I woke up! I look rather fit. I thought I was going to look like I was beat up by mike Tyson.

Saturday morning I was brought back to the room. A different room that the one I left.
There I kept pressing my morphine button. Kept falling asleep. My family came to visit then too. Watching me zone out!
Those are the days I remember the least about. Probably because not much happened. Ciara was on drugs. Ciara slept. Ciara was in pain. Ciara got more drugs and slept some more.
The next few days I just remember zoning out whilst doing something. I would take my phone to answer a txt and I would all of a sudden wake up mid txt. I have no idea how often I did that. I know I also saw messages, read them, fell asleep and when I woke up I put the phone away and forgot to answer….. So I’m very sorry if that was you! I think I answered most people after a while though. I also fell sleep while eating. I had barely any appetite anyway and the first couple of days I only got vanilla pudding and cocoa.

The nights were the worst. So much noise outside, so much pain inside. That morphine drip wasn’t doing it for me. I kept pressing and didn’t notice a difference. At night all you got extra for the pain was this oral morphine. That made me sick every time I took it. It also made me sleepy but I didn’t feel an improvement of the pain. I remember one night having taken it and all I was aware of after taking it was that I was about to vomit and that my back hurt! I kept having to get something against the nausea. The antibiotics also made me nauseous. I was so glad when I could stop them!
On the Saturday (day 1 postop) the physios came in and I stood for the first time and took some very shaky steps. My boyfriend was there and had to witness it. Poor guy. I don’t want to know what faces I was making. It felt sooooooo weird!!! A bit painful but mainly weird. Also I was high on drugs so that didn’t help the overall feeling. I didn’t faint though which is a good thing. I was expecting I would. Yay, so proud. First steps!!! From then on one of them came once every day to get me up.

On the Monday all of my tubes were pulled. Morphine drip in the back, wound drainage and the catheter. Was allowed to stop the antibiotics that evening too. From then on I had to get to the bathroom on my own! At first with the help of the nurse of course. She brought me a toilet chair that had wheels. She would come in help me stand up and sit me on the chair right beside the bed. Then leave me to it and I’d have to call her back to get back into bed. Eh… Yeah….. No. That’s not going to work. I can’t pee sitting in the middle of a room with a massive window. She ended up pushing me on that chair to the bathroom and sitting me on the real toilet. After a couple of times I was able to walk back to my bed holding into the chair and the nurse. Then only the chair and then walking to and from the bathroom on my own using the chair. Yay! I was able to pee on my own!!!

Because I was on so many opiates and I had barely eaten my bowel wasn’t moving. Opiates tend to stop their muscle movement. As soon as the nurse heard I could make it to the bathroom on my own she gave me a laxative to get things going. I was not happy about that. All went well but take into consideration the amount of time and effort I needed to go to the bathroom. I had to move a lot faster than I wanted to.
And those bloody drugs! My head was swimming. I felt unsafe walking or sitting. I kept asking about my tablets. That I wasn’t feeling well on them. And more importantly there weren’t enough!! And that I was NOT taking that oral morphine again. (They probably loved me!) I ended up getting a different pain med for the night times if I needed any extra. It took them a few days until I got more tablets after me repeatedly saying that the two tablets I get last max 18 hours and that I was in pain in the early hours of the morning and late evening. One nurse actually said to me that I should organise my meds better then, to take the tablet later so it lasts all night. hem yes so that I have a 6hour gap during the day instead of two 3hour gaps. Smart move sister! I ended up getting something to get me through that gap eventually. But best part!! A different nurse said she would give me another pill which counteracts the side effects of the oxicodon. I said yay. She came in later and exchanged my tablets and said the doctor had a better idea that this new tablet barely had side effects. She said we’ll keep trying until something fits, it’s a bit like doctor house she said. I said ok.
Oh my god! That night was the worst!! I couldn’t sleep at all. I was in so much pain. The extra pain meds weren’t enough! That new tablet wasn’t doing enough! I just lay there, cried and hoped morning would come soon so that I get the rest of my meds. They eased the pain a bit. When the doctor came in the morning I said it. She had an ass of a doctor with her and he just says “yeah well these operations are painful and stopping the opiates so soon wasn’t very smart of you”….. Squeeze me? Stopped opiates? What? I thought I was getting a different kind of one. My nice doc said she’d switch me back plus that anti side effects stuff. I later asked the nurse if I could have that opiate now since I’m supposed to be taking it again now. She asked had I taken my morning tablets. I said yes. She said that I can’t have the opiate until 7pm then because that would be double. I thought it wasn’t an opiate. She tells me it’s so similar that I can’t take it too. So I had to wait until 7pm to get some relief. I was angry and in pain. The nice nurse was right with her original idea that I can take the anti side effects stuff with it. It made a big difference. I mean I was still swimming but not nearly as much. Yay, nurse! Sometimes I think they should be given more liberties.

And here’s what you’ve all been waiting for!!! Some X-rays of the result!! And gory pics of the scar!!!!

24 titanium screws. One titanium rod. One cobalt chrome rod. Th5-L4

Compared to before:

The scar!!!
It has mostly closed perfectly except for the tiny red part at the bottom. That never reattached. It’s now open and slowly scarring shut.

I was sent home with a long list of drugs. Mainly opioids, muscle relaxants and analgesics. I stopped taking most of them the day I got home. I don’t understand how someone willingly takes these things. I felt awful.
The last time I took all of them was before I flew home in the hope of reducing the pain in my left leg, to no avail. I was so happy to finally be home!! In my own bed!!! I only took the relaxant and analgesics for a few days after that and then stopped them altogether. I found that the pain in my leg starts as a pain in my back which I didn’t notice under all those tablets. Now I do, so I lie down when it gets bad so that it doesn’t pull into my leg. That was an awful feeling and must be a nerve being irritated or something. Hoping tins will ease up soon. I want to move about. Since yesterday my head is finally cloud free so I want to move about.
All my drugs!!!

I’ve grown almost 4 cm.
I now can’t stand on both feet at the same time because the left leg is shorter. A good 2cm shorter! I now have to get my left shoe reheeled.

Things I wasn’t expecting:
-My laugh has changed. I have to breathe differently and I find my laugh is now different.
-Sneezing isn’t as satisfactory as it used to be.
-I fall to the left when I sit on hard surfaces…. Probably have less muscle on my left side than the right due to the way I stood before.
-I can’t eat as much as I did…. Although that will probably return to normal once I move more.
-sleeping is not my favourite pastime anymore. It’s actually quite uncomfortable. I can only lie on my right side or on my back so far and it a near impossible to get comfortable. This should also get easier though.

So all in all I’m happy with it and I’m unhappy with it. The fact that the part just under the fusion is causing problems already is really putting a downer on things. I really, really hope it’s going to stop soon and that this isn’t going to happen more often. My main problem is the I have pain under the fusion when I sit or stand and this pain pulls into my left leg sometimes. It means I’m lying around a lot since the pain is gone then. That’s not so good either. Waiting for a response from my surgeon on how to proceed.

I also have to go to the doctor more often because of that scarring part. Need to make sure it’s not infected and it’s clearing up.

Otherwise, cat and I are having a nice time together!!

Day before

So I arrived yesterday. Spent the first night in a holiday cottage with my family. Barely slept…. Been awake since 4am. Had a nervous breakfast, keeping down half a croissant and a cup of fennel tea. Yum.
It was great having my family there to break up the nervousness. (Hi mam, I know you’re reading this!)

This post will be more of a list of things I did today.
Thinking about the operation you tend to forget all the fun things you have to do to prepare!!

To start off my story I must tell you I wasn’t sure if they were actually going to operate because I was sick at the weekend. I got a cold while on a work trip…. But in the end I was sufficiently healthy to go ahead with the op.

Arrived and went to check in. So far so good. I signed a load of papers and was sent off to the ward. There I was sent to my first check up. This only entailed answering more questions, signing stuff and having photos taken of my back and posture from all sorts of angles.

Then off to the anesthesiologist for a recap of what she told me in July. Different Woman this time though. Nothing super exciting happened here.

Then we went to the room and waited around until a girl came and said I should go down to the EKG room. Didn’t get an EKG but had my lung function checked. Had to blow into a tube. Lung function is good 🙂

Then back to the room…. PS. This is the view from the room:

Yeah…. Living the hard life, I know!

Then we were told to go to get X-rayed. Asked where it was. She said by the EKG room so down we went. Sat there by a door that said “X-raying” and waited….. And waited …. And waited. Lunch time had come and gone by then. All of a sudden the lady across from us asked if we were waiting to go to the X-ray, said yes and she told us that she had to check in for that around the corner. Got up, turned the corner and there it was… The check in for the X-rays! I had no idea!! We had been sitting there for ages! Anyway, said I was there for X-rays and was told to sit and wait in a different room.
X-rays were really cool! Had ones done from the back, side and then some bending pics whilst lying down. Basically the helper technician grabbed my legs and pushed them to the left without moving my hips from their place and then shoved my outstretched arms with upper body to the left as well. Same was done for the right side. This opens up the curves and can show you what kind of movement is possible and more importantly it tells the surgeons where to important vertebrae are for my correction. This bending unbent my curves but also showed that my lower back had no problem aligning itself if pushed in the right position. So yay!
Then a doctor came in and himself and the technician put on their lead suits and the technician grabbed my legs to hold me and the doctor grabbed my head and pulled!!! While I was stretched they took an X-ray. This one is pretty cool! My upper curve was straightened! Haha.

After all that fun stuff I was back in my room and was called to a doctors office. Dr.platz. My dad was with me here. The doc checked a couple things, had me sign some things and then I asked loads of questions. I don’t think my dad really wanted to hear all that detail but I did. Sorry dad!
Some interesting facts:
-I will get titanium screws, one titanium rod and one cobalt-chrome rod.
-the titanium rod is not as rigid as the co-chrome rod and will be used to hold the structure. The more rigid co-chrome rod will be on my right side because it needs to hold my spine from bending back into the shape it has been for more than 13years!!
-the screws are cool. Their head is moveable and will only be fixed in place when the rod is attached to it. This allows for making corrections once the rod is in place (before the final tightening of the screws holding the rod in the big screws…. Lots of screws).
-the donor bone I will be getting is probably somebody’s femur bone. The femur heads are kept after a replacement surgery and are cleaned. No cartilage is remaining. The bone is then sterilised and sawed into small cubes. These cubes are then brought to the operating theatre where they will be milled along with my own bone (explained in a post below, where what and why) and then placed along my spine.

There was probably more, can’t remember all of it.

After that I thought I was done with stuff so we went for a walk to the beach…. From the above picture you can see it’s not that far! I was sitting down there and got a call that I should come back to the ward. They didn’t sound happy. Would have been nice to have been told that I wasn’t to leave or what else was going on that day. I missed a 3D imaging thing cause I arrived back after 4pm. Ah well, not that important seemingly.

Dr.platz came by my room again and told me that they’d only fuse down to the second last vertebrae, L4. Seeing as I have changes between the L4/5 I was confused and a little taken aback. That was part of the reason I wanted the op, to get rid of that “problem”. He explained it well why they didn’t want to fuse further but I was a little shocked and taken aback at that moment and I was very confused. He said that my surgeon was probably going to come by again and talk to me.

He did. Dr.K came by and explained the same thing. And offered to show us the X-rays. He hadn’t seen the bending X-rays yet. So off we all went to the room next door (the doctors’). He opened all the X-ray pics and measured stuff and showed it to us. He explained why he thought what and that they had discussed it with the prof. who runs the place. Started making sense why they didn’t or couldn’t fuse further. I was (inwardly) calming down and accepted their reasoning. Then we started discussing wether they only fuse the lower part and leave the upper curve to correct itself. We were kinda torn. He called his colleague over and he gave his opinion. He had some good arguments why I should get that part fused right away as well and not wait. And since it won’t make much of a difference to my range of motion afterwards, I agreed fully.
Ended up signing that stuff as well that I wanted the fusion from Th6-L4. And voila… That’s how quick I sign up to be fused my titanium!

Op is tomorrow and I feel curious, excited, nervous, scared and hungry.
Can’t eat again until Saturday! That’s so mean!!

So tired right now though that I hope I can sleep. After the final talks with my surgeon I feel really good about it too. I feel happy with the decision and I’m not as nervous as I was. I know exactly what’s ahead of me!!

Well not all of it, I tried to forget about the operation prepping the night before…. No food, no drinks, laxatives and more fun stuff!

And they’ll be shaving my back tomorrow. Haha.

Now, it’s time for bed! Hope the lady next to me doesn’t snore!!!

Spine Center in Munich (Wirbelsäulenzentrum am Stiglmaierplatz)

I had an appointment with an Orthopaedic doctor in a spine specialised clinic in Munich this week. I wanted to go see him before my operation because these guys are specialised in small segments, i.e. the individual vertebrae and the discs. I wanted to know what these guys thought of my discs.

I can recommend going to them if you need a disc doctor! Found them to be quite good. The doctor explained everything very well. What made him instantly more likeable was that he had read the letters from my surgeon before I went in to him (the ones I gave reception when I arrived) so he was on the ball.

There were a few things I wanted to know.
(As info: my spine is to be fused to the last vertebrae, L5. The question is still half open wether leaving the L5 free and fusing only down to L4 is sufficient. This is the part I’m wrecking my head about. I will be fused, but the question remains how far.)
1.
What does he make of my disc between the L4/5 vertebrae. According to the MRI it is damaged and has a reduced signal in the scan. He said it looked alright, not the best but it’s not bust. Wouldn’t worry too much about it. Of course he couldn’t tell me how long it will last because that is different from person to person.
2.
Will that disc L4/5 be able to deal with increased stress when the vertebrae above it are fused? He told me he can’t tell. He can tell me, however, that right now it is under strong one sided pressure which has caused the damage so far and that after the operation the spine will be straight and the pressure will be more straight down as it’s supposed to be. The amount of pressure is higher but it’s in a normal position. He said he can’t tell me how long the disc will stand the pressure before causing problems. That I should trust the surgeon in Neustadt on that account because he has the most experience with this level of spinal fusion. Problem is, the surgeon gave me the choice, fusion down to L4 or L5?.
3.
Would I be able to get a prosthetic disc when the time comes and it goes bust? The doctor was quite realistic here and said no. There are many reasons I wouldn’t be considered for a prosthesis. For one thing, they don’t last for ever and under increased pressure from the fusion they would need to be replaced faster than in a non fused spine. Also, and more importantly, the likely hood of the actual disc causing a problem is significantly lower that the joint behind it causing pain. The prosthetic wouldn’t help in that respect as the joint will still be moving and cause pain, i.e arthritis. And considering I already have arthritic changes in those joints chances are good that will be the problem and not the disc. He also explained that having such a long fusion above a prosthetic disc wouldn’t be good. It would mean I’d have a long steel lever in my back. And lastly, the prosthetic probably wouldn’t be able to be attached because I will already have two screws in the vertebrae…. no space for the prosthesis screws! So that’s a no no.

So all in all, no to the prosthetic disc, trust the surgeon and good luck.
BUT it has helped me make up my mind. I still want to be fused to the last vertebrae L5. Reason being that the disc isn’t happy and won’t get happier through the fusion and the fact that I already have osteoarthritic changes in the joint between L4/ L5 means the degenerative process that has started the won’t ease up if it’s not fused. The osteoarthritis is the main reason I’m going ahead with this surgery. It’s really debilitating despite mine only starting up. It’s nowhere near fully inflamed and I don’t want to feel it if it ever gets that bad. I could deal with the odd pain here and there, tight muscles and a poking pain between vertebrae but I cannot and will not deal with the arthritic feeling in my spine. It renders me immobile and useless and I don’t want to feel this old! End of story. I don’t want to.

Here is an image depicting the area I was talking about. The lumbosacral disc, between the lumbar vertebra (L5) and the sacrum (S1) will be the lone survivor. Chances are high that I will get lumbosacral arthritis where these bones will erode and cause pain. And then a possible fusion of the spine to the sacrum. Also the iliosacral joints (these joints join the sacrum in the middle to the ilium on the left and right. Shown on one side with blue dashed line) will probably not be so happy about all the movement and cause problems.

My last little disc, L5/S1, has been named Fritz. Fritz will have to deal with everything I do all on his own! I will do my best to take care of Fritz as best I can.

The countdown has begun!

Set a date!

(CAUTION: some images may disturb you….. Just letting you know.)

Our journey started on Wednesday at noon. My friend and colleague, KG, accompanied me on my trip to see the surgeon. We flew from Munich to Hamburg then took two trains to Neustadt in Holstein. We stayed overnight and made our way to the clinic on Thursday morning.

First was a quick stop at the bakery to get breakfast and then to the beach! It’s a really pretty place. The clinic is right by the beach so I will hopefully have a nice view from my room!

The first time I met Dr.K he seemed quite frustrated. Turns out the computers weren’t showing any of the X-rays or the MRI pictures. They had been doing that all day seemingly. It’s understandable that a surgeon who relies on these images to make a prognosis would be annoyed and frustrated when he can’t see anything. We ended up switching rooms where it worked. He warmed up then too, even to the point of joking around …. Once! … Haha.

Basically what was said was that he’d definitely suggest surgery too. It’ll just get worse and even make the operation more difficult and the result less positive. He also listed a whole bunch of things that could go wrong. Mentioned having kept a patient’s back open for a week before closing it… Lovely. Also the risks of paralysis, thrombosis, etc. I received a looooong list of possible complications. Had to sign that I was told and that I understood the risks.

He then sent me to the secretary to make a date and then to the anaesthesiologist.

The anaesthesiologist was really nice. Explained the complications again, asked me questions and explained some more stuff.

I’ve a couple of medical issues that need to be addressed before the operation. I need to get my heart approved for surgery. I need to get my acid reflux checked because I’ll be lying with my head down during surgery and the acid could burn up my oesophagus and possibly cause an infection in my lungs. And I need to donate blood so that I can have it transfused during the op…. Not sure how well that will work with my iron deficiency but I guess we’ll see!

After we sat down by the reception and wanted a quick coffee from the machine. It wouldn’t work so we got one from the waiting room. When we sat down by the reception again there was a man who wanted coffe, the machine had taken his money and wouldn’t work so he called the receptionist. The portly lady strut over to the machine and started beating the daylight out of it, no kidding. She didn’t get it to work, they gave him his money back and she arrived shortly after with a sign to say the machine was out of order. It was Hillarious to watch and the sign she put up was even better. (Translation: toilet not working)

Went back to Hamburg then and spent some time by the docks. It’s pretty there! Flew home the next day. Was so wrecked after all that!

what will be done? (warning: graphic)

He measured my curves again. 66degrees lumbar and 48degrees thoracic. That would indicate it has gotten worse….. but I think it’s all just a measurement error. That exact X-ray (see below) has been measured by three different doctors now. And they differ. 62/44, 63/56 and now 66/48 … And the X-rays before have been 62ish/42ish. …. So I’m going to assume not too much has changed. Defiantly not the 1degree per year they said almost 12 years ago!!!! I’d be 74/66 then and it’s defiantly not that bad!

My newest measurements lie at 66/48. The operation indication is 40/50 so I’m way above on the lumbar side and closing in on the thoracic indication.

This here is my spine (X-ray 2013 taken from the front. The newest X-ray looks the same but the quality is worse). You can see at the top of my lower curve that the vertebrae isn’t fully in line with the others. I think this is the one that “dislodged” itself while I was in college. I’ve never asked the doctors about it, keep forgetting.

These are the bony protrusions my body has added to my vertebrae because that area is such a high pressure point! (MRI) to the left and right of my spine are my kidneys. I have two. That’s good 🙂

Here I’ve marked the vertebrae that will be fused together. Th6-L5. Perhaps they will start one higher at Th5 or even Th4. That will be decided during the operation. (Red lines) and I’ve marked that dislodged part again.

Here the MRI of that dislodged part. That’s one of the areas I have pain most often…. Makes sense when you see the images. The disc shouldn’t be that dark either. It’s really squished and dehydrated. To be honest I’m surprised I haven’t had any herniated discs!! (Knock on wood I don’t get any either.)

They will leave my discs in place. The spinous processes (see below) will be removed and put through a bone mill to get autologous bone shavings. These will be stuffed onto the back of my vertebrae and help it to calcify and therefore fuse my vertebrae together. I will probably require allogenic bone too (from a bone donor. The bone is crushed and autoclaved.) they are also using a method to collect my blood during the operation. It will be sucked up and immediately mixed with heparin in a specially designed machine. After they have at least 500ml (a pint) it will be centrifuged and the red blood cells will be transfused back to me. It minimises the need for blood packs. I will also be under neurophysiological monitoring. I will have two electrodes on my head and a number on my arms. They will monitor the nerves. If something is off they will wake me up and make me move my legs. They used to do that at every operation but with the new technology they don’t have to. I will also get a blood pressure monitoring device in, yes inside, my arteries on my forearm! It will give a continuous readout of my blood pressure, the oxygen level and all sorts. It gives instantaneous information for the anaesthesiologist. I will be intubated and ventilated. The anaesthetist said I’d get a sleeping cocktail and they wait for me to stop breathing. Then they ventilate me and the operation will begin. I’ll be in a slightly forward position so a lot of pressure will be on my face and I’ll be getting fluids so they’ll probably accumulate in my face too…. I’ll look like Klitschko afterwards. Good thing I’ll be hidden away at the ICU the first night.

Spinous processes

Spinal parts so you know what I’m on about.

So when is all this happening????
Friday the 13th November.

I think it will be a lucky day 🙂

If you guys have any questions, feel free to ask 🙂 I think there is a button for that somewhere on the page….

This will probably be the last post for a while. I will keep you updated if something happens or something changes 🙂

Who, where, when, what?

My name is Ciara and I’m currently 26years old and living in Munich,Bavaria-Germany.

I have idiopathic juvenile scoliosis with a double major curve. (Explanation in the previous post)

A review of the last 20 years to get you to where I am now and why.
(Careful, this is a long post.)
My scoliosis was first seen at a pre-starting school checkup. I was sent to an orthopaedic and an X-ray confirmed that I had a curve in my spine. I was sent to the physiotherapist and then to get a small wedge to wear in my left shoe to equal out my leg length. I was told my legs were unequal and the wedge would correct the tilt. I should mention that at the time I still lived in Germany with my parents.

Not long after, we moved to Ireland! Unfortunately my scoliosis was pretty much forgotten because there were so many other things that needed attention so that we could start a life there and no available physiotherapist or anyone with knowledge really. I stopped wearing the wedge too…. bold me.

Fast forward a number of years and we noticed that I was pretty crooked. So off to the orthopaedic and a new X-ray. Yep… Pretty darn crooked at that stage. So my parents and me set off around Ireland trying to find an orthopaedic that had conservative methods of treatment. Nope, couldn’t find one. ALL of them wanted to operate immediately cause the curve was so big. True, my degrees were above operation indication, but I had absolutely no pain or problems!!! Thankfully my parents kept saying no. They also knew that conservative methods were available in Germany and that they worked! But Ireland didn’t believe in braces (corsets) or physiotherapy so we were back to square one. One of them also said my legs were of equal length so I didn’t get a new wedge. (Spoiler alert… They’re not!)

After that debacle with all those doctors my dad searched the internet and found a rehabilitation clinic in Germany that treats scoliosis with specialised physiotherapy. Seeing as the irish don’t believe in “voodoo exercises” we saved up and my parents sent me over by financing it themselves. I was there for 4 weeks in November/December 2003. During that time I was taught many exercises to strengthen certain muscles that would help stabilise, support and straighten my back. The before and after pics were great! Even though I was fully grown at that stage I also received a brace (corset) which corrected my posture. I wore it about 23hours per day for 9-10months I think. When I was back in Ireland I didn’t continue the exercises but I did wear my brace…. Towards the end I wore it less and less. It was uncomfortable and annoying.

In retrospect I don’t think I should have been at the clinic by myself. I was 15 and putting all that responsibility in my hands was a bit much. One parent should have been there to learn the exercises so they could continue them with me…. I mean, of course I wasn’t going to continue them on my own. I don’t think that the clinic really understood either. In Germany its normal that girls go there, learn these exercises and then continue them at home with a local physiotherapist who also knows them. I didn’t have that. So in retrospect it was pretty useless all of it. Short term it looked great but long term it made no difference I don’t think. Same with the brace. On it’s own it couldn’t do much because I was fully grown. Perhaps with the exercises it would have helped. Meh, expensive piece of plastic.

Fast forward another few years and I’m in college. It’s summer break and I’m working at a pharmaceutical company in a lab. My back hurts to stand or sit or twist on Thursday and Friday. I had two weeks holidays from that Friday…. I woke up on the Saturday and couldn’t get up. The pain was excruciating! I couldn’t straighten up, I could stretch my legs. I lay there in a foetal position and cried. I spent a good week laying down and hobbling around crouched to get the the bathroom. I was overdosing on ibuprofen and received a stronger tablet from a friend that completely knocked me out! As soon as I could kind of walk again, a little straighter at that stage, I went to the college doctors place. I couldn’t see a doctor because I didn’t have an appointment so I saw a nurse who asked what happened. I said I woke up like this she didn’t believe me. She kept saying I probably fell Friday night and don’t remember (we were in Ireland after all and falling around drunk is the norm) and she wouldn’t believe me when I said I don’t drink and I wasn’t out. She told me that I’m too young for a slipped disc and I should just keep taking ibuprofen that I’ve probably just hurt a muscle or something. So I went back to lying down and flooding my system with tablets. A friend of a friend at the time had a bad back too and went to get acupuncture at a polish ladies house. He gave me the number so I rang there and she said that her master/teacher was there (the guy that taught her and who is also a chiropractor! Bonus!). So I went off to see the polish chiropractor. He looked at my back and said there’s a vertebrae out of place. He pushed it back in and stuck some acupuncture needles in me. Lo and behold, two days later I could walk straight and I was pain free!!! Thank god that was the end of that. The following Monday I was back at work having spent my holidays lying around the house in pain.

About two years after that, I had finished college and was living in Spain working as a volunteer at a donkey sanctuary. It was all hard manual labour in the Spanish sun. My back did give up a little quicker than other people’s would but no pain, no problem. Because I was curious after the two week dislodged vertebrae incident I paid to have my back X-rayed privately. (Long story but it would have been near impossible in Ireland, I tried after the dislodging incident, to no avail). My back was still as it was except that one vertebrae looked a little… Well… Dislodged. Because the previous X-Ray had been almost 9 years prior I can’t say if it was that two week incident or one of the numerous times I fell off a horse or was thrown into a fence. Ah well, I felt fine so all was good. The curvature didn’t get worse by the looks of it.

Shortly after Spain, in November 2012, I moved to Hannover Germany and worked as a veterinary nurse and did a lot of lifting (from guinea pigs to German shepherds or 20kg feed bags). No back problems really. Sometimes a little tired but nothing serious. I didn’t last all too long there and I moved to Munich the following year.

About half a year after I moved to Munich, I sought out a physiotherapist and a scoliosis specialised orthopaedic. I thought it was probably best to start with the physiotherapy again seeing as it was available to me in Germany. New X-ray, same curves. They hadn’t gotten worse. A curvature progression of 1 degree per year is anticipated in most cases. Mine had changed by 2 degrees over 10 years. And that could be considered a measurement error. Pretty amazing really.

At this point in my life, at 24, my back started troubling me. At first I noticed it got tired more and more quickly. I stopped wearing high heels because my back would hurt the next day. I stopped carrying handbags because the one sided weight would strain me. After a while I had to switch from nice flat shoes to running shoes because I needed the dampening effect they had. I only recently realised how much I had given up because of my back. My whole social life got more and more difficult and I would decline offers to go out or go to the cinema or even go to dinner after work because I couldn’t sit or stand that long. Walking trips got increasingly difficult to the point now where I can walk maybe half an hour on a bad day. I can forget hill walking and even simple tours strain me too much. It’s ridiculous!

In a last attempt, hoping the problem was muscular, I was sent back to the rehabilitation clinic for 3 weeks to give my muscles a kick start. That was no fun. I could barely complete all the supervised training and I usually missed the free training times because I had to lie down, I couldn’t stand any longer. I lay down over lunch time, I lay down after training, I spent my time there trying to recuperate so I could continue the following day. The only positive thing that happened their is that I was able to move my right leg again!! I had had a trapped nerve for almost a year (!!) at that point which wouldn’t allow me to lift my leg and made the effort very painful. (Caused, most likely, by a massage I had as the problem started only a few hours after it.) oh and that leg still isn’t right. I can move it again and its not painful in everyday use but if I lift it and try and hold it up it really hurts still. Its also weaker than it was. I think the N´nerve was damaged and it wil just take a long time for it to heal up again.

Story is not over yet. After the failed rehabilitation I got a new brace in the hopes that it could hold me and reduce the pain so that I could exercise…. Nope. Doesn’t work. Now I have another very expensive piece of plastic floating around.

The pain I have varies. There are a few different kinds that I can distinguish between. One is very low near my hip and is a more dumb pain, a prodding, poking pain upon certain movements. It’s not always there. It comes and goes. Another is between my ribs, mainly on the left side, which hurt when I lie down, when they stretch. It’s a sharp, stabbing pain and often catches me unawares when I stretch or move in a certain way throughout the day. It usually takes my breath away. It’s also there when I relieve my back of weight during the day by hanging onto something or putting my upper body weight on my arms and shoulders. It eases up after a short while but it’s right back again when the weight is put back on my back by straightening up or standing. It’ll ease up in that position then again. It’s not constant, just upon a change in pressure. Another pain is similar to the first. It prods and pokes around the middle section of the lower curve. Probably the discs again or that dislodged vertebrae. It also comes and goes. I sometimes have pain in the sacroiliac joints. They can be very annoying because walking is difficult. All those are there again and again and can be very painful but I can cope with them. One pain however is extremely debilitating despite not being very painful. It feels like I’m rusty. My movements are sore and difficult. It’s just extremely uncomfortable, even when lying down. It doesn’t go away. It stays for weeks. It prevents me from sitting or standing long. It prevents me from doing much after work. It’s even gotten difficult to last all day at work, I often don’t anymore. Going food shopping at the weekend is difficult. Basically all the things I should be doing as a 26year old are getting increasingly difficult. I feel like an 86year old.

About a month ago I went to see a specialist near Stuttgart who reiterated what my orthopaedic said that I should be operated on to prevent my back from worsening and hopefully reinstate my life. He also showed me that my legs are definitely different lengths. He sent me to have an MRI of my spine as preparation. The MRI showed various degenerative processes happening. I have arthritis due to the localised pressure from the curves, my discs don’t look too happy and teh vertebrae themselves are starting to twist and slide off eachother. It’s definitely time I have the operation. Once my spine is fused the degenerative processes will stop. I should be in a better shape than beforehand.

In conclusion, I never expected this. I wasn’t prepared for this. I was never told that I could develop arthritis at 26! I thought that if my curve didn’t get worse I wouldn’t get problems. I thought the “worst” that could happen were slipped discs when I was older. I think if it wasn’t for the arthritis I still wouldn’t get the operation. But its too debilitating for me not to. As well as that I know enough to understand that there is no use in waiting for a degenerative process like that to get worse. Its going to get worse and I’m already suffering because of it, physically, mentally and socially. That said I am very very glad that my parents always said no to operations. Now I have made my own adult decision to have it done. After seeing the MRI results I’m positive I’ve made the right decision. I’m currently looking forward to it. It will be painful and difficult but I believe it will be worth it. This blog will be following my trip from this point on.

First on the list is a 900km trip to see the surgeon who will perform the operation. That’s next week. I will let you know how it goes and also explain the operation procedure.

So what’s this all about anyway?

I have decided to follow my life in a blog in the hopes of talking through some issues and most importantly, maybe being a support for others as well as being a guide for my friends and family to understand what I have and what I’m going through.

My name is Ciara and I have scoliosis.

Scoliosis means that your spine is S shaped (or C shaped) when looking at it from the front or back. All humans have, or should have, a natural s curve in their spine if viewed from the side but it should be pretty straight if viewed from the front.

Most scoliosis is idiopathic meaning the cause is unknown. It’s seems to run in families. More women than men have it. It is split into congenital, caused from birth usually due to vertebral abnormalities, or according to the age of onset, infantile, juvenile, adolescent, adult. It can be caused by several other defects and diseases, this would then be a secondary scoliosis as it arose secondary to a different problem. It can also be caused by injury. All mammals can have a scoliosis.

I have an idiopathic juvenile scoliosis. This means we don’t know why I have it and it started when I was a child. I have a major double curve meaning I have two (actually 4) curves, one is a large lumbar curve of 62 degrees and the other a thoracic curve of 44 degrees.

I realise a lot of scoliosis patients have it worse than me. That said, a lot have it better than me. My curvature is large but has given me very little trouble…. Until recently. And when the problems started they decided to go full hog and have left me very weak and incapable of pursuing my life as I had been or as I should be able to.

In this blog I wish to talk about my experience. The treatment possibilities and what I have tried as well as how and why it got worse but most importantly, my success in getting back up on that proverbial horse.

I wish to share my experience of my rehabilitation and hopefully inspire you to do the same. Get up and get better. Better than before (hopefully). I’m not there yet but I’ve taken the first few steps and I will continue to walk slowly until I can run, run faster and further than before.