Dear All,
I am writing to ask all of you a favour. I live in a south coast of UK. I was diagnosed with chiari in 2014, because I was pssed out and being taken in A&E, I have never blamed my health care professionals team but myself, I have been suffering from neck, back, anckle, shoulder pain, I also have lots of chrnic fatigue syndrome from over 15 years..my gps told me that I was suffering from FM (Firbromyalgya) they asked me to slow down, accept my condition, but me being workoholic and being executive hqave lots of team and enjoyed my role so much I just take no notice..I alwys think to myself that FM or sickness is ''a state of mind'' and mostly what I call as a lazyness..so I keep forcing and strhrving myself..until last year.2014..when I became houebound and have to give I up my job completely..as I could not put up with the pain..so I was given so many medication..but none of them were really helping..so..when i MET my health care team either GP/s NEUROLOGIST/S OR NS/s I said to them..Look: '' I would rather die..!!! then being living like this..what can you do to help me?? please..I was crying,...I said,,,,please..please help me..you suppose to cure me..I come to you..so that you can make me better..?!!!..just honestly tell me..how can I HELP YOU..TO HELP ME????, I DONT WANT TO LIVE LIKE THIS... i LIVE LIKE VEGETABLE..., AND GUESS WHAT THEY SAY? : well to be honest with you.. we do our best to help you..we try to managing your pain..chiari can't be cured the only thing we can do is to operate you..but the main goal is only to relieve the pressure of the CFS flow...so that you would not have the headache..if you have any other condition that might..you can think qbout it..have several opinions and decide if you like to go ahead with the operation...some people never come back they carry on with their quality of life, some peope might come back..so..they explained it to me very honestly..basically..they were very honest..inside and out giving me also the pros and contras, benefit and risk etc..etc....
SO I HAVE THE CONCLUSION THAT IN ALL HONESTY IN MY AREA THE HEALTH CARE PROFESSIONALS LIKE THEY TOLD ME..HAVE A LITTLE KNOWLEDGE ABOUT THE CHIARI IT SELF.
For this reason..I would be grateful would you mind to share with me..would you like to post me a message..what would you expect from a health care professional in your point of you should do in term of our condition? because I am going to meet up with them and let them know what should they do to increase the level of awareness of chiari and what is our expectation as chiarian.
I know we might not benefit it, but others who might suffer like us from this area or perhaps other area (health care professionals do move around) might benefit from their undersstanding.
I valued your feed back and support.
THANK YOU
Wow.
I would try to get as much information as possible and go back and see your neurologist. I used to live in the UK for medical problems you have to have a referral and you probably have been jumping through hoops to get where you are. What I would do is take as much information as possible to them. Have you had MRI's done recently as you don't say. But I would make sure you have recent reports and try and search for a neurosurgeon in your area who specializes in chiari. Let me know how that turns out.
Hi,
Oh yes, due to that, I was so lucky, I have seen 3 neurologists and 3 NS, in the end I got the best neuro surgeon who is going to do my decompression (only I just decided..as I joined to many support group) and read so many website and youtube before decided the OP ..finally after reading and hearing so many story I then went back and decided to have the surgery (I have no choice really) I just unable to cope with this headache..inbalance , numbness, less concentration etc
They put me at the end of May - they told me that letter will be sent 6 weeks prior to the date
are you going private or NHS?
He wont take PRIVATE SO ON NHS, but I heard he is excellent, i could not do any better than him, when i DONE THE OP..I setting up a support group..hence I would like to get the feed back from all of you so that I can pass it on to all these health care professionals what chiarian expect fro their health care professionals..I know what I expect,,,as I got it from them..they ALL are excellent to me...but I have to be crying..and begging them..they should not be like that..shouldn't they...?but i suppose I understand now..as they really have not got a clue about chiari...
The first I heard of it was when my daughter was diagnosed last year. She's one year post op this month. Doing good. She suffered will right side numbness before the surgery and still suffers. She had vertigo symptoms along with neck pain and headaches which went after the surgery, the headaches come and go occasionally but ibuprophen eases them. Still unsteady on her feet. I see a little sign of limping from time to time. Gets tired easily and has to keep rehydrated. She's 18 years old so she has her life ahead of her. Her neurosurgen was excellent. We were lucky to know doctors in our area who recommended him. Good luck and keep the group posted.
Have you got any feedback what you expect from them?, so your daughter still suffering?, not as bad as before though? when you said unsteady on her feet what do you mean?, is she still being looked after by the NS,,where do you live?
She gets frustrated because she has no feeling in her hand, she drops things. I would say she is 99 percent recovered (her only real symptom is numbness now). Her neurosurgen said because of the numbness her right foot doesn't have the same sensation as her left so if she walks on something that isn't even, it's going to be uneasy on her gait. If she has a question or problem, we can call him (as it's been a year we don't have anymore appointments). I am an expat living in New Orleans.
Ah OK, are you going back to UK sometime? OR YOU GOING back for holiday..if you are expat..you must get an excellent health care woth blue cross or BUPA? oh that is good then at least she is one of the successful decompression surgery..you must count your blessing though
It is nice, I remember when we used to be expatriates when we worked abroad anywhere..we always have an excellent remuneration..the package always fantastic..
no we live here permanently we have to pay for our healthcare. So Deanna's surgery was 15,000 (that's with our insurance). But it was all so worth it. I think we would have lost her otherwise.
Oh..dear..but then..when you think it is your life what can you do..money worth nothing..well, in the UK, it is not free we paid out insurance, I paid 50% taxes all my life now when I can't work, I got sick leave expanses exactly the payment as people who have never contribute in their entire life (how fair is that)..so I -paid nearly £3000 per month for the past 15 years..look what i have got now???..but not to worry though..chiari is not coz to ending life is not like cancer or thing like that even though is more pain than cancer and tumor... i hope she is OK now..so you like it better living here than in the UK?
It's cheaper than the UK to live (house prices etc) but when it comes to medical that's another story. Although we feel you get what you pay for. I miss my family we come back about every two years.
Your family still in the UK...you can skype can you?, where in UK are they? distant is not a problem at all now..well when are you back here?
Please make sure you receive and MRI on your spine as well to look for any syrinx that may be in your spine. My daughter has had four brain surgeries and four spine surgeries for her Chiari. We had a very good well recommended neurosurgeon at first. But decompression surgeries wasnt one that he Would do often. So he just did the typical surgery that many get. She had many problems after. She now has another surgeon who has much knowledge, but because if previous surgeries, she now has a shunt in her brain. But two things you should check for is any syrinx in your spine ( syringomyelia) which is a symptom of Chiari. And also please be checked for a tethered cord. Sometimes, a Chiarian has a tethered cord and having surgery on that could be an easier surgery to try before brain surgery. My daughter is now going on to have a tethered cord surgery. Sometimes there is a tethered cord that cannot been seen on and MRI which is tethered cord oculta. Many people with Chiari has this as well. And it is something recent that surgeons are connecting Chiari with . Gooduck with your surgery. Many many people have wonderful outcomes from surgery!
yeah we go back about every two years, we do skype, but it's not the same, you can't give a computer pic a hug. we do seem closer than when we first moved over. Technology brings everyone closer.
Its true though, funny when you are far away its seems they miss you so much..they cn appreciate you much more..and little thing..reminding them of you (LOL)
I had three MRI SCAN (contrast) they did not tell that I have syrinx nor hydrocephelus...how would they know...I am glad you let me know qbout this..i am going to make appoint ment to my gp tomorrow and get me to have MRI ON MY SPINE..CAN YOU PLEAE TELL me..what do I NEED to do to find out whether or not I hve syrinx or hydroce. as my back is really killing me these days.. thanks brend...xx