Oesophageal Patients Association
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Scoliosis - 2nd post

It is only me again, the person who left the long post about scoliosis. I appreciated the input I got from Revju and Alan, I just wanted to convey that I am surprised that out of all the people who must be on this site that No one has gotten Scoliosis in light of all the treatment most of us had pre-surgery.

Surprised only because 2 doctors have said that they think that the treatment of EC - radiation and/or chemo may be part the culprit?

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There may be some value in contacting Macmillan Cancer Support. They do have an awareness of some of the late effects of cancer treatment. I suspect it all depends on what are generally regarded as the main cause of scoliosis?

macmillan.org.uk/informatio...

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Thanks Alan - I will definitely look into it. :)

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I have scoliosis of the lower back. I was diagnosed with his about five years ago and nothing has been done. I was told Pilates was good for this and was taught a few basic exercises to do by the physio and given painkillers. Like you I have many things going on all at once including a hiatus hernia, Barrett's Oesophagus, peripheral neuropathy in my feet, mild asthma, etc. I have always wondered if any of these are connected but I suppose we will never know as they are just treated individually. I have always wondered if my asthma medication caused acid reflux and this in turn caused my Barrett's as many people with asthma get acid reflux. I feel my immune system has a lot to do with it all but unfortunately there is no test for that! We can only guess what could have caused what but we will never know!

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Hi Karjade: Thanks for responding to my post. I did not know you could just have scoliosis in one portion of the body - like your lower back. I am pretty much in the dark about it actually. I am not in the dark as much as I was because it is progressing fast like that Volcano in Hawaii - that is a good example because it is like it is uncontrollable. I am hoping the brace I now wear will slow down or stop any progression. I too have that hiatus hernia - I only know because I read the report that I requested. No doctor has ever brought it up to me but it is there - I really shouldn't say it as singular because it feels as thought there is more than one.

I too have peripheral neuropathy in my feet - sometimes hands and sometimes feel that my whole body is affected by neuropathy. I have read that taking Vitamin B as a preventive measure may be good but not to take more than 200 mg. I am no doctor but, if something is going to help what is ailing me then I am all for it. I take enough meds now that one more is not going to hurt.

Have you asked your oncologist if your asthma medication could possibly cause acid reflux? Did you have the surgery for esophageal cancer? It sounds as though you have with all the things that you are going through now.

Does your scoliosis pull you to the right or left like as in a lean or doesn't your lower back affect you in that way... boy, do we have the lists of problems, or what??

I am sending you Better Health Wish... it just goes through cyber space with everything else.... :)

I have yet to find out how people get emojis on this site - I could swear I have seen them.. bye for now... LITS

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Hi. I have not had oesophagus cancer and hope it never comes to that. When you are diagnosed with Barretts Oesophagus (which quite often follows a hiatus hernia if left untreated) you are prescribed PPI's and are usually given an endoscopy every couple of years so I am on Lanzaprazole now for life. I have read somewhere that scoliosis can cause digestive problems and maybe that is how the hiatus hernia and Barrett's started. I have been told I am the lucky one as now I have Barrett's I will be scoped every couple of years and kept an eye on. I did ask if the asthma medication could cause acid reflux but they just said they hadn't heard of that!

What I am finding really difficult to live with is the peripheral neuropathy. It is very scary at the speed it progresses. I have had it for Just over a year and it started in my toes with numbness, burning and tingling and has now reached my lower legs and also my hands. Not coping with this at all and I am due to have a nerve conduction test on the 6 July with a neurologist. I have been prescribed with amitriptyline which sometimes takes the edge off it a bit but could not get on with Gabapentin which they prescribed first. My own doctor has not been at all helpful and I practically had to beg to see a neurologist. Are you on any medication and does it help?

I had an X-ray yesterday on my lower back as I was diagnosed with scoliosis about four years ago and I want to see if it has got any worse. I have been going to a chiropractor for quite a few years hoping that will help with keeping me in alignment.

Like you I am prepared to try anything natural because I hate taking drugs. I hate taking amitriptyline but I only take one a day and they are the lowest dose. My doctor wants me to double the dose but I won't at the moment.

It is lovely to talk to you as we seem to be suffering with the same things and it foes make you wonder if there is any connection! Karen xx

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Hi Karen – I don’t get on this site very often so I don’t see posts as frequently as I should but I am still a newbie at this having had joined not too long ago. Thank God in Heaven that you have not had the EC and praying for you that you never do! (EC is for Esophageal Cancer – I understand that some people – across the pond maybe? say it using an O=oesophagus cancer).

I wish the plan with me would have been to give me an endoscopy every couple of years.

The more I read on sites like this – the more I think I haven’t been blessed with the best doctors and it surprises me, with some of them. My actual surgery took place at the #1 hospital in the country – or they were for some 5 years in a row back when I was there – and, I wasn’t even

offered the MIE – non invasive surgery (which, I did not know existed – shame on me) and come to find out later that the surgeon who was to do my surgery wasn’t one who did MIE’s!!!

You said you took Lanzaprazole – so that must be a PPI. I take Rabeprazole (generic for Aciphex) AND took it for some 8 years prior to my diagnoses of EC. This along with a lot of other things are just another reason why the patient needs to do their due diligence when it comes to their health and the medications they are taking and why they are taking them. You cannot count on doctors or anyone else doing this for you.

You mentioned that you read something about scoliosis could cause digestive problems which may have lead to my hiatus hernia so, I have a feeling that you did not know that I had EC and the treatment (radiation and chemo) and then the surgery, along with it

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You are definitely a lucky one!!!

I too have peripheral neuropathy – it is on my list of ailments somewhere….and medications – there are many – one of which is Lyrica. I am surprised your doctor has not recommended that – well, you did say that you tried or were taking Gabapentin – those two are kind of one in the same however, I tried Gabapentin and it just wasn’t for me… then moved to Lyrica.

Have you found out about your lower back scoliosis? I have found out that I best wear the brace I have as much as possible and my doc said that I might just get to a “breaking point” from the pain and go forward with surgery – but, that is NOT going to Happen… I will do anything I can to avoid ANOTHER MAJOR SURGERY…

Take care,

LITC

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Hi. Lanzaprazole is a PPI and I seem to get on with it okay. I still get nausea quite a lot and take antisickness tablets. If it gets too bad I take two Lanzaprazole for a few days.

What is really getting to me is the peripheral neuropathy which is in my lower feet and ankles mostly. I am finding it so difficult to live with and makes me very anxious. I get horrible side effects from some medication and Gabapentin made me feel depressed and I could not think straight. I was then put in Duloxetine which made me feel really sick 24/7. I refused Lyrica and continued with a low dose of amitriptyline which does not really help that much. How do you cope with this? I got this after taking Lanzaprazole so I wonder if there is a connection!

Had X-ray on my lower back where the scoliosis is and the result is not back yet. Even if it has got worse my doctor has already told me nothing can be done! xxx

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Hi. I do know that radiation is a big contributor to neuropathy but you haven't had radiation - correct? Did the doctor(s) tell you how you came to have this peripheral neuropathy? Do you have diabetes? (I apologize if you have mentioned how it came about). It doesn't sound like your system is willing to allow you to take many prescription drugs without giving you a hard time. I take Duloxetine with no problem and the same with Lyrica. Possibly these 2 drugs help my situation (in that area) wherein it seems your body rejects them. I have so many other areas to contend with - unfortunately,,,,

So, Lanzaprazole is a PPI - do you take it for acid reflux? It seems that you don't have any problems with that one. As far as there being a connection between the Lanzaprazole and the peripheral neuropathy (is that what you meant?) I think that would be a good question for the doctor. It doesn't sound like it would be but I didn't have scoliosis prior to my EC surgery either - so, I wonder....

I think you said that the scoliosis in your back doesn't really affect you? Like, in the way you walk, etc.?

Mine didn't used to - not at all - well, it wasn't even there before so I stood straight up - then gradually and then quite quickly my body started leaning to one side... very strange indeed.

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Hi. I do not have diabetes and I have never had radiation. I just started to get tingling and numbness in my toes just over a year ago and I went to the doctors and he said "you have peripheral neuropathy and there is nothing you can do!!". I had never even heard of it. Slowly it started to spread up my feet to my ankles and I went back to the doctors and he prescribed amitriptyline and I asked to be referred to a Neurologist and he refused! This went on for another few months and I went back to my doctor and insisted I was referred and this time he did. I had blood tests, circulation test and nerve conduction test which were all negative. I am going back on Friday for another nerve conduction test but I have been told it is idiopathic neuropathy when they do not know what has caused it. How long have you had peripheral neuropathy and how has yours progressed? This has pushed the Barrett's and hiatus hernia to the back of my mind whilst I am trying to deal with this. It is the nausea that reminds me I have it as I do not get acid reflux. Before I was diagnosed I had slight chest pain, nausea, difficulty swallowing certain foods and burping and after about two years I was referred for an endoscopy and that is how I knew about it. This being another diagnosis I had never even heard of!

Are you in America? I am sorry but are you male or female? I live in the UK and female. Hope you do not mind me asking but what age group are you in? I feel as I have got older everything has gone downhill all of a sudden!! I try and keep as active as I can because I do not want to give in to this and I am not the sort of person that likes being housebound! Karen.

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Hello lightsinthecity

I have a kephosis which is a bending forward of the spine (which fortunately remains straight as opposed to the side-to-side S-bend of scoliosis - despite having lost two ribs on the right side), leading to the typical 'dowager's hump'.

This was occasioned by something as yet unknown in the whole EC IL saga.

Firstly I had of the order of 27% skeletal calcium loss. Dumping followed by hypoglycemia

initiated a full-blown seizure, when I foolishly continued walking soon after a meal. The fit was of such severity that I fractured two thoracic vertebrae which had been weakened by calcium loss and which then collapsed ventraly (towards the stomach).

I wore the dreaded plastic corset for many months but discarded that on advice that I had to build up sufficient muscle strength as to be self-supporting. I have been more or less stable for twenty years that is until last Sunday when I crashed my quad-bike!

It feels as if I have undone everything, we shall see. Our lives are never dull are they?

So my case is down to loss of bone strength maintaining the column but I understand that yours is due to loss of muscle supporting the vertebrae in their normal front-to-back S-bend configuration, with the result that the column corkscrews.

At least one other member has suffered a similar misfortune.

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Hi! I hadn't heard of Kephosis - yes, scoliosis seems much worse and if I did not say it before - radiation may have had something to do with it along with surgery - possibly, even though I am 9 years out there are things that have happened because of the surgery or treatment that took their time showing up. It was like another mountain to climb to recover and right when I though I was at the top (and, trust me, it took a l o n g time) then I started to go back down that mountain with other things happening to my body - unfortunately. I am curious, how did you lose two ribs? My right rib is sticking out and if there were a way to take it out before it busts through my skin might be good.???

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In all honesty I can't recommend a costectomy!

I lost Right 5 & 6 as the metastasis from my primary oesophageal carcinoma (presumed - no tissue typing) had arisen in the right lung and spread into the bone. 'Reconstruction' comprises a patch of mesh into which tissue grows.

Obviously it only provides limited structural support which is noticeable when lifting, breathing strongly, or any other exertion. Also it is relatively inert and so tends to be painful at the margins.

That said your protruding rib may be a pointer. Costectomy is a treatment for idiopathic adolescent scoliosis but I don't know if it is relevant later in life.

Here is a link to the summary of a paper on that subject; coincidentally I knew the 3rd author quite well but can't question him as he is wielding his scalpel in another (hopefully higher) place.

ncbi.nlm.nih.gov/pubmed/394...

How is your lung function?

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Hi GW:

Although I figured out what a costectomy was - I googled it anyway just to make sure :)

was not thinking seriously of doing something that dramatic - but, you are right - it must be a "pointer" because it points right outta there like it is about to break skin (my doctor said otherwise the other day).

As far as my breathing - it is what it has been which is the best it can be with COPD.

Although I have never brought that aspect to this board, I am told that the COPD is likely from all the radiation I had.

Thank you for both your input and the attached summary.

LITC :)

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p.s. oops! pls. exchange dramatic with drastic

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