Good Bad News, is there such a thing?

So today was Spine Surgeon MRI review day. Even though I had requested my own MRI results (ill list them below) and was some-what prepared for the appointment, I was still feeling nervous about what the outcome would be, wasn't expecting what actually happened though!

I knocked off work a little earlier than the appointment, for those that know me, I like to be early to my appointments and avoid rush and car park drama. His offices were just down road from work and they have a car-park at bottom of the building, such a nice change not having to pay for parking. The small joys.

Right, lets start with the 'Good News' first... my L5/S1 disc looks good! apparently... compared to how it could look. The findings from MRI were are apparently 'typical' of those of someone with my condition and in my age group. Also he believes the same for the L1 vertical herniation, "I see it a lot" he said.  No surgery required 'at this stage'. 

Now for the 'Bad News', if you can even call it that. As there is definite narrowing in the foramen (bony hollow archway created by pedicles of adjacent vertebrae, creating a passage-way through which all spinal nerve roots run) some nerves might be 'irritated' however not trapped as such, so no way of actually telling what is causing my Sciatic pain. My treatment plan apparently is mine to sort out, no referral to a specialist physio, no prescription or even suggestion about medication, just good luck, increase your cardiovascular exercise and it 'should' but might not get better, come back and see me if it gets worse though, final outcome once it gets bad enough will be to fuse my L5/S1 together to avoid any more pressure on the disc once it degenerates completely over time. I will be booking an appointment with my GP in meantime to talk over what the affects of long-term use of Paracetamol or any meds for that matter will be on my Solitary Kidney, Paracetamol doesn't do the whole trick but it helps a little, I refused the Codeine and Tramadol previously, that just leave Gabapentin and other nerve blockers and he said intellectually they are not going to help me when it comes to working 8 hour days. I'm not prepared to commit to any long term use of them without regular checks on my kidney function as I would rather suffer some with the pain in the meantime till I really need them. 

There you have it. Most of the above I had already found out via google so I find it quite comical really. My father and I knew it would be the outcome anyway as most specialist surgeons wait for a pain scale of 10 before taking any action. 

So it continues... I will talk it over with my Pelvic Health Physio at the end of this month but in the meantime I'll try looking into Spine Physio that I have been recommended by a friend from work, maybe get back in touch with the Osteo I was seeing previously, see what she says, willing to try anything at this stage... including exercise, as comfortable as that is going to be maybe that is what I've been lacking lately.

Reminder to self, choose joy, count blessings.

Lots of puzzle pieces!

I feel like I haven't posted in ages and this will be one of those posts that I will edit about 100 times as I forget where I left off and have so much to write about.

I think my last post I talked about the discovery via a Lumbar Xray of my Spondylolysis and Spondylosisthesis. Well.. lots of reading has been done since then you can just imagine! Dr Google been at it again. End of November 2016 I finally saw the Spinal Surgeon who agreed you don't have pain for no reason, everyone deserves a diagnosis before treatment is given. That is the first time I feel like I have been taken seriously, he didn't just talk, he listened, then referred me for my Lumber MRI. FINALLY! it was right on Xmas so I didn't go in straight away and it was nice to just have a break from appts actually over that time, got stuck into some spring cleaning and time with hubby for a week off work then headed in for MRI my first week back to the 'real world'.

I was a breeze this time, being my 3rd one it was actually quite relaxing! they gave me a blanket even, it was an 8am scan and before my morning coffee so nearly nodded off again. I was asked at the end of it if I would be seeing someone about the results and I said a month away, I then started to feel a bit nervous about why she was asking. Thoughts in back of head for past few weeks were hope there is nothing growing in there that shouldn't be as the pain seems to be getting worse not better... paracetamol x4 daily is helping (when i take it) but knowing its not good for my kidney I only take it when I feel like I really need it. Stupid I know but im pretty good with pain. Sciatic pain is not fun however and I really feel for those that suffer badly with it.

Now, you probably know me well enough now to know I wasn't going to sit around waiting for those results so I emailed the GP's office about a week or so later and asked for the results to be sent through. Hmm not sure that was a good idea! Not only do I have a misalignment of vertebra, its noted that I also have one bulging and vertically herniated disc at L1 and also a bulging disc and annular tear possibly at L5/S1. Not sure at this stage what that means for me as both a mild, but could explain a lot, seems no nerves are looking compressed but the disc nerves may be the issue? Yup, again if I was going to do it, I will do it properly! I now have to only wait one more week to see the Surgeon and see what he has to say. At this stage surgery not likely I don't think but looking forward to some kind of plan, physio, brace, meds (just no NSAIDS) you name it ill try it once! So will have more information and stop make my own diagnosis. I had picked up on the report that my kidney was Atrophied which isn't good, it means that parts of my only kidney were starting to die away.. so I emailed the nurse and asked for that to be queried with my GP, surely that isnt good and why did we not know about that already? Turns out the Radiologist has misinterpreted the clinical coding and that was actually meant to say Hypertrophied.. we already knew that so was a sigh of relief there thats for sure. Always read your results and always be your own advocate!

Today I also went to see a Pelvic Floor Physio, referred to by my bowel surgeon. That was a great appointment! We spent an hour just making notes on the file and having a quick exam and the good news is its better than we thought! No surgery needed at this stage there either, my pelvic floor is short (which isn't normal) but consistent with my long history of IBS and Bladder problems, there are a few muscular issues that need to be worked out and a Bladder Diary to be done but other than that I think the appointment went great, I did get the 'omg you really are a interesting case' look... but Im well used to that now. Looking forward to seeing her again at end of this month, we want to wait and see what the outcomes are from the Spinal Surgeon appt, as my 'anatomy' is my number one contributor to a lot of these issues. 

Still finding the silver lining and dancing in the rain, will update again soon.

Congenital Anomaly #3!

So, its been a while since my last post. I ended up back to the GP to see if she would send me for a MRI or at least to a spinal surgeon to get to the bottom of why my back pain and nerve pain has come out of nowhere. She reluctantly sent me for a Spinal X-ray of my sacroiliac joints and lumbar spine...that was this morning and guess what!? I now have yet another diagnosis... one im sure none of us were expecting!!

Isthmic Spondylolisthesis and Spondylolysis (congential spon″dĭ-lo-lis-the'sis): is the displacement of vertebral disc from the spinal column caused by a lesion/fracture of the pars interarticularis. At this stage im Grade 1 which is 0-25% forward slippage, so conservative treatment options only and unlikely to result in need for spinal surgery.

Spondylolisthesis

This link above will give you the jist, but long story short one of my vertebra sits 5mm forward at L5/S1 which will explain long history of lower back pain and a whole lot of other things! Like why ive never been a runner, hated exercise, have weak legs and never liked sleeping on my back and wake up with pain in my back. Its interesting as once GP left a message on my voicemail, DH googled it straight away and I ticked every box on the symptom list! why wasnt this something everyone thought of? surely they could have googled my symptoms.

Biggest issue now is that its most likely to be causing my sciatic issues in my leg even tho my GP didnt seem to think so, we had a really tense conversation about it as she was happy enough for me just to 'deal with it' and live on paracetomol which only masks the pain, I still feel it through that but im unable to take Anti-Inflammatories due to my Renal Agenesis, so that leaves Codeine and Tramadol. Neither of which I want. So off to a Spinal Surgeon I go, again, not something the GP was keen to do either but grumpily I advised her that im not the doctor here and I need a treatment plan, I cannot continue to work without getting some form of treatment, If the Spinal Surgeon decides not to do an MRI and its just something I have to deal with via nerve meds and physio, so be it, but im not going to just be fobbed off. One of the symptoms of my condition is that butt and leg muscles are tight, so here is hoping treatment is just as simple as a bit of physiotherapy to reduce the compression on my nerve and i'd be happy with that. 

So, again, the chronicles continue. I'm elated we now know what is going on and its not that serious (yet...), again I know my body and I know when something isn't right enough to do something about it. Its my dear friend that keeps me battling, she was always so supportive when I first started this journey however she wasn't listened to in hers and her time on this earth was cut short as a result. I vowed to be my own advocate and trust my gut. Thanks hun, you and I would of really have a laugh at this one, who would of thought id end up with another one on my list and another specialist/surgeon. LOL! Now that i've been referred privately to a Spinal Surgeon its going to be a bit of a wait I think. In the meantime ill be chatting with my Osteo, I don't think ill be going back there unless she can do something magical to help in the meantime.

I will of course do a more detailed post when I know more, I might even update this post... its going to end up a book so I have to keep all my info in one place. 

Also, In the meantime we will be embarking on a new journey which we'll probably also document here, the hunt for a surrogate! its going to take a while here in NZ (if we find one at all), ECART ethics committee deems you must know the person or spend 6 months getting to know them before you get approval. We might proceed with a cycle and freeze some embryos just in case yet. everything is very up in the air right now but we are not rushing ourselves with any decisions, there is lots to look into first. This diagnosis though has really decided for us as NO way I will ever be able to carry a pregnancy. Its a shame, but i'm not going to let it define me... as Lada Gaga says, "Don't hide yourself in regret, Just love yourself and you're set, I'm on the right track, baby, I was born this way".

Sacroiliac Joint Dysfunction?

Yup, just add it to my list. I think going to the Osteo is a double edged sword really. At this stage it has saved me from the inside of a MRI machine for the 3rd time, but weekly visits are hurting a wallet a little at NZ$70 per session.

They are still not sure what's going on.. yes..they. As of this week I now have TWO Osteos. My current Osteo was on leave for the school holidays this week so referred me to a colleague who ended up giving me a second opinion really. I had a really interesting session this week learning how the left is also affected and may contribute to whats happening on the right. I booked in to see him next week before seeing my other Osteo again the following week. At this stage we are working on my major issue, which we are leaning towards the below diagnosis based on my symptoms: Sacroiliac Joint Dysfunction.

Interestingly enough, the sacroiliac joint is where my Fathers condition started, Ankolysing Spondilytis, however I have been tested for that gene and was found not to have it. Due to the Auto-Immune side of things could work out to be plain old arthritis yet, or just lack of proper movement for far too long, we will see, plenty more assessing to do. 

What we do know is nothing from my diaphragm down really moves freely like it should, your organs should massage each other. Time spent at the Osteo is to start to try and fix some of that as I am now entering the chronic category, I haven't been very symptomatic over the past few years but this has been gradually getting worse, seems I'm so used to pain I just muddle through with it. But this nerve pain is a killer. Its not so bad right at the minute but if my nerve is trapped it may get worse and damage might be hard to repair, but enough for me to react to it. Only time i get relief is when I'm lying down in the evening, most painful when sitting and standing, driving. Seems to be ok when walking but tend to run out of energy, chronic pain is quite tiring. I have much respect for those that battle worse situations than I, most of all my Father, he is a true warrior and that's definitely where I get my pain threshold and determination from. I just think of those dear to me who battled and are currently battling the unthinkable, how courageous they are and how very hard life can be. It definitely raises me up.

So, one day at a time now, work has been great, they give me use of the standing desk whenever I need it, my new job has the flexibility to work from home too as my Osteo is close to home, i'm very lucky in that respect. Will wait and see what unfolds really. Both Osteos want to keep me on and see it through as once again i'm a very interesting case and they are learning a lot, bringing out those old textbooks. There is just so much to potentially fix, just trying to concentrate on one thing at a time.

What I know for sure though is this body is definitely not in any fit state to carry a pregnancy. With this in mind its time to explore all options relating to surrogacy as reality is my body may never be up to it, its something we always knew but seemed unfathomable and unreachable here in NZ, we wont know until we try right?

So, its all part of the journey that is my life and I'm grateful for it. I will continue work hard, play hard and be a better person no matter the circumstances.

Between a rock and a hard place

It had been a while since I was at my Bowel Surgeons private practise, coming up about 5 years nearly. Wow their office space is a lot different. A little classical piano playing in background, nice furniture and art on the walls. Noticed they even had a box with hot drink sachets like in a hotel, could smell the lady next to me's peppermint tea. It was very relaxing, lucky I turned up 30 mins early to fill in paperwork as had a little time to look out the window and watch the rain. 

Dr was very busy so was about 30 mins late into appointment but that was ok as team had everything under control at work (I checked from waiting room haha, cant help myself). He asked how I had been, wasn't sure if he actually remembered me, seemed like he did, you kinda cant really forget my weird body once you have heard about it I suppose, he would of brought up my file before the appointment for a quick refresher I bet.

I told him I was here about pain today. I mentioned I was also seeing and OB/GYN and Osteo about pain and both were wanting me to check with him to rule out any contributing bowel issues. Turns out it was the right call really as got a lot out of this appointment, glad I did for $270!! 

I did think about jotting all of what we talked about down here but you know parts of it are TMI so ill give you the jist... through diet my symptoms of IBS have somewhat improved to the point where i don't rely on the glycerin suppositories anymore, however my bowel still does not function the way everyone else's does and probably never will again. Going 1-3 times in a 10 day stretch is seen as an improvement, still I suffer from constant pain across my belly button and down my right side where we have confirmed my cecum, like the Osteo predicted, is dropping down lower than it should when full and might be causing pressure on my ligaments, but definitely my bladder, so finally after all these visits we have confirmation of whats causing my bladder discomfort/pain. Also my lower back pain is definitely contributed to by my bowels when they are causing discomfort, however they are not causing the nerve issue. To assist in the reduction of pain (whie we try and fix whats causing the nerve issue) he has prescribed me Movicol for the next 6 weeks to see if there is any reduction in pain or improvements in movement, this will add extra water to my system, supposedly not so much that I need to stay close to home (if you know what I mean). Its also a drink, which is great as it means im getting into the habit of drinking more water too. 

He is now tossing up whether to do a follow-up Colonoscopy as my previous one was 10 years ago just about, however thinks we may benefit more from doing a CT Colonography. He will not only check for anything untoward, he will be checking my other 'issues', the length of my bowel, the bowel muscle itself and how I react to pain as he will be blowing it up with air. All of the outcomes of that will determine the course of treatment going forward, he said its likely he will need to act on his findings with surgery so doesn't want to throw that all at me at once, try the Movicol first and look at that next year, hes away at Xmas, so if follow-up leads him to book me in for more diagnostic work, we can make decisions from there. He wants to wait and see what outcome the Osteo has for my back too as he has even offered to refer my for a Spinal MRI now, thinks my nerve pain in leg is disc related. Please do not let that be the case!

Last but not least, he brought up my functional bowel MRI in this appointment to talk about the issues my cecum may be causing putting pressure on my other organs. It was then he pointed to several greyish spots seen on my uterus, spots of what he thought were possibly Adenomyosis. I had never noticed them before then on the scan and wondering if anyone else had? for him to point them out straight away how could my OB/GYN of missed that during my Lap? Sighhh, now Ive got to email my Fert OB/GYN and see what she thinks. That would be something we need to get to the bottom of before our next cycle for sure. 

So I have a follow-up booked for 28th November at this stage. Osteo on Thursday again, will update after that. I have a feeling its going to be another eventful 6 months, lets hope I stay employed as going to need my health insurance!

So....Osteo!

Well I phoned the Osteo and Colorectal Surgeon this past week. Jeez my bank account is not liking this much at all, luckily parts are claimable as im still technically diagnostic for some parts. Turns out the Osteo wasn't taking on new patients for rest of the year, until it I mentioned I was a referral from a surgeon. I then ended up with two bookings in November and my name on the cancellation list. That seems like a long wait, but was sure it would go quickly.

My cell rang today and It was the Osteo clinic. Wow its only been a few days. Cancelled appointment, could I come in at 2pm, sure! Thankfully I have an awesome team at work, so tidies up loose ends and headed over there, knew I had paperwork to fill in and we all know I have a lot to fill out normally. Met the Osteo and headed into appointment. Im not going to go into too much detail but will cover what I think we might have sorted in the first consultation. I was there for my lower back, hip and sciatic pain, there is so much else I'm sure she will fix for me going forward.

I explained to her that its only been the last 4 years that I have come to learn about my differences in anatomy, how my body works differently to others, complications we have faced with fertility etc. She got me to stand and felt my back, I'm really tight right through my shoulders and back and my hips aren't as wonky as once thought! Good start haha. As we spoke more I started to remember things that I hadn't added to my paperwork I filled in, more importantly my lack of half my reproductive system and the shonky ovary. Lol. She hadn't really heard of a Unicornuate Uterus so this was going to be really interesting for her I'm sure. She asked a bit about the fertility treatment history and then apologised and made sure I was comfortable being there considering they were a Midwifery Centre as well. I assured her not only am I not shy, have a high pain thresh-hold but I am also very strong-minded and would be fine.

She asked me to lay down on the examination table and  relax so she could get an indication of where this pain as originating from... its so hard for me to pinpoint. It shoots out from my lower back into my hip/sitting bones then heads down my thigh into my knee and down to my right foot. I'm thinking it has always been there for a while but was somehow exacerbated by my Lap surgery. 

One thing they tell you at the Osteo (if you haven't been to one before) is that sometimes it feels like they are doing nothing... but they are always doing something. I likened it to a nice light back and abdominal massage, it was actually her exploring my anatomy while we talked about the location of things. In particular we talked about all current 'issues', missing parts, parts that aren't where they are suppose to be and then we focused on this strange painful long lump in my right side. That bothers me a lot of the time and is separate to my Endo and Back Pain. Turns out she thinks is Bowel, which I have always said that is was, where it gets interesting is that its possibly Large Bowel but shouldn't be down there? Its something I'm going to get to the bottom of though as its been noted on my ultrasounds but nothing was found during my lap surgery, time to revisit those scans I think, she was going to access them and take a look. Good spotting by her! lucky I have one more appointment with her before the Colorectal Surgeon in a few weeks time.

One thing she noted is there should be series of ligaments that would have been present on my right hand side to hold onto my kidney may or may not be there, what is holding my right ovary up there near my liver, with that lack of structure it is possible other parts of my anatomy have decided to claim that space? We shall see.

There are definite links to what is going on with my ligaments, nerves, musculoskeletal system right throughout my abdomen and its going to be a lengthy and costly process to get me to start to come right I think, she warned me after today I may feel worse for a few days after all the poking and prodding, I assured her that I can handle it. She is now off to get her text books out before our next appointment as I am a bit of a complicated but interesting case (surprise surprise) and again she might draw on the knowledge of her colleagues too, I feel like I'm in good hands. I'll continue to take Paracetamol when it gets bad enough and try not to sit or stand for too long.

Meanwhile you know I'm going to google it all right, there has GOT to be someone else out there with the same thing going on surely. Next week should know more so likely I wont update until then, it depends what I find on Google.

OB/GYN again

So today was the OB/GYN followup visit, one week since I met with my NEW OB/GYN. How many does a girl need? this is my 4th haha.

He was looking forward to our appointment, turns out he has been thinking of my case and hes been talking a bit to colleagues about it. My stray ovary still seems to fascinate him and he was quick to tell me again today that once I have children he is taking it out. Its not staying in there he told me. Not looking forward to that surgery!

Turns out my NEW OB/GYN Fert. had not been in to see him, she mustn't of had time so he quickly scanned her notes and then we had a chat and DH and I filled him in. My real reason for seeing him today was to see if I needed to revisit a Lap for my Endo and we quickly go back onto the subject of pain. Where/when do you have pain currently.... so just the usual.

We talked about my NEW pain since seeing him last and he agrees with my new specialist that it would be very unlikely Endo would come back with vengeance in a two year period, possibility it could have been stimulated by my hormone treatments but again very unlikely. He popped me up on the bed to check out my abdomen and it turns out the the pain I mentioned then was not related to the tissue in my abdomen but more so the bone. Yup, knew it. He got me to stand up, checked my shoulders, made me sit down and checked soles of my feet. You have curvature in your spine and you're lopsided he proceeded to tell me. Something DH has been telling me for some time. He ha now suggested that I go and see his Osteopath whom happens to specialise in pregnancy as well (lucky me). He said she will refer me again if she thinks is a Chiropractic matter. He thinks my other abdominal pain could be related. Once that pain is under control we will have more of an idea of where my Endo is at and probably try medication over surgery. We will see. 

So outcomes from today? Im now officially handed over to NEW Fertility specialist as she also is a Lap surgeon specialising in Endo. I will only go back to my other OB/GYN for the ovary removal i'd say. I'm a case he wants to continue to follow. He is seeing my NEW specialist at a meeting tonight so they will chat and he'll pass on all my photos to her.

I'm phoning tomorrow to book Osteo appt #1 and following that a Colorectal Surgeon follow up appt. Im sure it doesnt matter which way round I do those. Just need to get onto it, especially while I still have a job and health insurance! 

Update after next appointment.