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YOUR FEEDBACK MATTERS

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b2wc97455
b2wc97455

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 

1 like, 31 replies

31 Replies

  • whodatbritchick
    whodatbritchick b2wc97455

    Posted

    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.

     

    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      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

    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      They put me at the end of May - they told me that letter will be sent 6 weeks prior to the date
    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      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...
  • whodatbritchick
    whodatbritchick b2wc97455

    Posted

    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.

     

    • b2wc97455
      b2wc97455 whodatbritchick

      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?
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      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.

       

    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      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
    • b2wc97455
      b2wc97455

      Posted

      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..
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      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.

       

    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      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?
  • whodatbritchick
    whodatbritchick b2wc97455

    Posted

    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.

     

    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      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?
    • brendab
      brendab b2wc97455

      Posted

      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!
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      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.

       

    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      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)
    • b2wc97455
      b2wc97455 brendab

      Posted

      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
    • brendab
      brendab b2wc97455

      Posted

      If the MRI's were done on your brain, they would have been able to tell if you have hydrocephalus. You would have to have an MRI of your spine to look for any syrinx (syringomyelia). There is a doctor named dr bolognese in New York that many many people have great results with. He allows for you to send him your MRI scans and he can do phone consultations to discuss what his plan would be. He does charge for the phone call, ( around 300 dollars)but maybe even another opinion from another doctor would be good so you can take it to your neuro there. Just a thought. Many people ( my daughter doesn't) also have something else called EDS when they have Chiari also. There seems to be a large connection in regards to eds , Chiari and syringomyelia. My daughter has a syrinx in her whole spine. Now they are going to go in and look for the tethered cord because her Chiari surgery still looks good but her syrinx is not going away. Sometimes a tethered cord can cause the syrinx to remain and also a tethered cord can cause the Chiari. I hated doing the brain surgery with my daughter but she is just not typical and healing has always been hard for her. I wished the first doctor would have tried to search for a tethered cord first. Remember sometimes a tethered cord cannot be seen on an MRI.
    • b2wc97455
      b2wc97455 brendab

      Posted

      Well I had have MRI/Scan brain contrast 3 times... I have got yrinx nor hydro. so its only chiari 1 - 4 mm - I am going to have the surgery end of may I live in the UK and i just feel each week getting worse......I ve got numb.. inbalance...etc..etc..what else would you think I need to CHECK 
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      My daughter had the same symptoms last year, towards the end before the surgery she also suffered symptoms like vertigo.  Her neuro wanted MRI's with and without contrast all the way down to her thoracic region.  On an up note, she is 99% better, it took her about six months to get back to any normalcy.  She still has the numbness though and it gets her frustrated.  
    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      so I dont need to get the spine scan do I, they told me that I dont have any syrinx nor hydrocephalus or what you call it..your daughter still have numbness in which part?.. well 99% is really excellent though..if you think about it..chiari is a big think..they cut the skull out of her..my of my..she is a brave girl.is she still carry on at UNI now?, does she drive?..she still have to be careful not to do roller coaster..(you know what youngtes do...LOL) she is not on medication at all is she?
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      I would go down the spine as far as they suggest, just to be on the safe side. my daughter's was half way down the her back to the thoracic region. Good luck. 
    • brendab
      brendab b2wc97455

      Posted

      Yes you need to have an MRI to look for a syrinx in your spine, not the brain. Hydrocephalus would be in the brain. BUT a syrinx needs to be looked for in the spine. They probably said no syrinx at the base of your brain but you need to check the whole spine. My daughter has a syrinx all the way down from the top to her bottom of her her lumbar. So have a MRI of your spine.
    • b2wc97455
      b2wc97455 brendab

      Posted

      Hi brendad, thank you so much, I ll go to my go tomorrow and ask for them to refer me to Hospital for MrI for my spine....
    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      yes, thanks I am going to ask my gp to refer me to hosp to get mri/scan for my spine
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      yes  you do, to see how far down your problems go.  She is finishing her senior year and going to uni in the fall.  She can drive and can do no contact sports, she gets headaches from time to time, the only thing she takes is ibuprophen.  But once again you do need to get an MRI as far as they can go down.
    • b2wc97455
      b2wc97455 whodatbritchick

      Posted

      Thank you Hun, I ll let you know how i AM GETTING ON, and please let me know if you are in the UK, we meeting up
    • whodatbritchick
      whodatbritchick b2wc97455

      Posted

      will do  it wont be for a couple of years though.  We just got back from a trip 
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