Recent Posts

Pages: [1] 2 3 ... 10
1
Diagnosis / Re: New to this!
« Last post by swanjackal on Today at 12:29:26 PM »
Yes, every visit.  I am fairly fortunate that the syrinx in my spinal column collapsed, so therefore it was not a priority when I first came to see him.  He has suggested that if there is no change to the syrinx, and the pain/fatigue can be managed by painkillers, then he would not recommend the surgery quite yet, although was willing to do so if the symptoms become unbearable.
 
I also have concerns about work/finances that have so far put me off the operation, and have caused me to soldier on for the time being, but that is my choice really.  Some days the pain is unbearable, sometimes it's manageable, sometimes minimal, but it is always there.  Movement is restricted, and like mentioned in my previous post I have numbness too in certain areas of the body.
 
I am having another MRI scan in 7 days time, not just of the brain base and top of spine, but of all of the spine. So will probably find out soon if there as been a visible change to the CM or the syrinx.
 
I just try and go about with my business and not think too much of the operation.  I almost feel fraudulent compared to some people and the ordeal they have undergone having to have the operation immediately.   So my perspective comes from someone who has been diagnosed a while, with symptoms who has not opted/had the operation.
2
Diagnosis / Re: New to this!
« Last post by behappy84 on Today at 11:41:46 AM »
Thanks Kris


Has your NS said anything to you about surgery as an option?
3
Diagnosis / Re: New to this!
« Last post by swanjackal on Today at 10:45:47 AM »
I feel for your situation, especially with te young family.  Having been diagnosed around 3 years ago, I have periods where I cannot function too.  Any physical activity leaves me drained for days after, as well as producing a headache that lasts for weeks.  I have lost feeling in my left hand, regions of my right torso, but have been soldiering on with work and life, trying to delay an operation as long as possible.
 
Also, I have found periods are worse for me during days when the temperature drop ssignificantly  from the previous day or between day/night.
 
It is so hard for people to understand the pain and fatigue felt when on the surface you appear "normal". Work colleagues do not understand fully (the ones I have told).  One thing I am thankfull for though, is having a partner (wife) and family who are very patient and understanding, as it seems you already have.   
 
I have not had the operation yet, so I cannot give advice on pros and cons of it, but can give you support from someone pre op who has to deal with very similar symptoms as yourself (even at moment arms feel like lead typing this out).
 
You will get depressed with your situation on times, but remember there is support there for you, and despite not posting often on here, the advice and support given to/by others here has been exellent, for myself, and hopefully for you too.
 
My advice is to take your time, only do what you feel comfortable doing, find the right balance between life and pain relief, and try to stay positive.  Your children will grow to understand your situation as they get a little older.  Don't ever feel like a failure.
 
Stay Positive,
 
Kris
 
4
Diagnosis / Re: New to this!
« Last post by behappy84 on Today at 09:51:30 AM »
Thank you. for your kind words. Hopefully I will start to realise I am not alone!!
5
Diagnosis / Re: New to this!
« Last post by losing my marbles on Today at 09:14:20 AM »
Hi,
I'm newly diagnosed too, and haven't had all the extra's to put up with as you have.
Want I want to say is, NONE OF IT IS TRIVIAL, sorry to shout.
I know the more experienced members on here will give you the advice you seek, but I've learnt we are all here to support and learn from each other.
 
Gentle hugs
Bev
6
Diagnosis / New to this!
« Last post by behappy84 on Today at 09:05:21 AM »
Hello everyone!


I am so happy to have found this Support forum as most Chiari websites seem to be American so I find it quite difficult to chat as the time difference gets in the way! Sorry for the long story....here goes! 


I was diagnosed in April of last year and to be honest at first my Neurosurgeon took a 'wait and see' approach, but now I am in pain everyday and I generally find everyday a struggle.


I was diagnosed with Idiopathic Intracraniel hypertension in 2003 and had a pressure shunt fitted in 2009 for that. Unfortunately it became blocked and I had lots of issues with it so had a revision in 2010 I now have a Lumber Pleural shunt which seems to be doing the job.


I feel like my Neuro Surgeon managed to control the IIH but now there is the issue of Chiari.


I am struggling with the most simple tasks (going to the toilet for example) The pain that any form of straining gives me is unbelievable. I have stiffness in my neck and on a really bad day my arms feel so achy and weak also I struggle to grip anything.


I also have pressure issues with my ears...at times it feels as though my ears are blocked.


I have two young children and it is difficult to explain to them that I am in pain as they don't understand!


My husband has been so supportive and understanding although I feel like I am a burden to the family everyday as I feel so useless! I had another MRI scan on 29th of May and my Neuro Surgeon has asked to see me regarding the results. I am wondering what the treatment options are and really just trying to chat to anyone who has been through surgery and how the decision for surgery was made etc.


I feel I have suffered for long enough now and just want to be able to do normal things again. I mean even shopping and carrying heavy bags gives me pain so I really am finding it very difficult. I used to drive but do not anymore as I have visual problems relating to my IIH. So I started walking my children to and from school. But even that has become a struggle for me and they now travel to school via taxi everyday which make s me feel awful and a little lazy to be honest as some parents at the school do not understand.


What I find really difficult is the fact that on the outside I look perfectly healthy (to those who do not know me) so i guess it is difficult for people to understand.


I am guess my emotions are up and down and I am a little confused over what is happening to my body. I have gone from being healthy and happy to miserable and feeling like a failure! I am taking anit depressants to help with my low mood but sometimes I feel so isolated and alone and I know my children feel frustrated with me because we cannot do the things we would normally do. Even if I try we always end up leaving early because I am feeling unwell. This may seem trivial but it is disturbing my life so badly I just want to be pain free. There is no morning that I wake up without pain it really is frustrating. I would really like to talk to anyone who understands where I am coming from...if thats atall possible lol!


Thanks for letting me vent and sorry for the long message! :-)
7
General Support / Re: New to forum. Diagnosed last week and already getting fobbed off!
« Last post by Spurs Chick Nic on June 18, 2013, 12:08:10 PM »
Hi Lisa,

First of all I would contact the imaging department at the hospital and recommend getting a copy of the scan you had done, it costs anything between £10-£20 depending on the hospital but well worthwhile, once you have that I would insist that the GP refers you to a neurologist perhaps at a different hospital or at the same one if your happy with it and once you have an appointment make sure you give them a full detailed list of symptoms and how it affects your daily life, if they think its necessary they will then refer you to a neurosurgeon or will try to manage you with pain/ preventative medication first, although they will look at your scans and they are helpful they will always treat your symptoms first rather than what's seen on your scan, hope this helps!
8
General Support / Re: New to forum. Diagnosed last week and already getting fobbed off!
« Last post by losing my marbles on June 18, 2013, 11:45:10 AM »
OMG I feel so awful for you, and feel I've got off very lightly in comparison.
Those on here with far more experience than I ( as I was only diagnosed 4 weeks ago ) will I'm sure be very helpful, and we will all offer support to you.
I imagine if a private consultation with an ns is not an option for you, then a request for a second opinion cannot be ignored'
 
All the best
Bev
9
General Support / New to forum. Diagnosed last week and already getting fobbed off!
« Last post by lisajo on June 18, 2013, 11:34:05 AM »
Hi, I'm new to the forum.  I had an full spine MRI last week due to having numbness in my feet and legs (and occasionally my hands and fingers).  I was expecting the MRI to find some nerve root compression but instead found a 'mild/small' chiari malformation (no idea on mm) and a dilated central canal.  However, the spinal surgeon wasn't concerned so I came home feeling OK about things.  He even said it wasn't clinically relevant (probably because I hadn't told him about my other symptoms!)  It was only when I did some research and spoke to a friend (who is on this forum and great) about it, that it all started to add up.  I get a lot of headaches (which I've always put down to sinus issues), ringing in my ears, dizziness and obviously the numbness.  I am now in a quandary what to do next?  I went to the GP today but she didn't seem worried either but my other half insisted that she wrote to the spinal surgeon I saw who could then suggest a neurologist.  The GP said that all the neurologist would do was reassure me and say that I am fine!  Basically she didn't listen at all.  I feel like they are making me look like a drama queen and I feel really uncomfortable about the whole thing!  What would you do next?  Thanks in advance xxx 
10
General Support / Re: 1 year anniversery held in the hospital
« Last post by leanne on June 17, 2013, 04:17:32 PM »
Hi,
so sorry to hear you have been having problems still. I hope your ns apt goes well, and you can find something to help you soon. Take care, Leanne x
Pages: [1] 2 3 ... 10