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CM info needed

Posted , 5 users are following.

Tufayo
Tufayo

Hello. I have CM 5mm. I also have C-spine issues. I have had all the tests. Blood flow is fine and CSF is fine, however, i am very symptomatic. My neurologist felt as though my flow was fine that it most likely has nothing to fo with my CM. Im in process of getting set up with a neurosurgeon to address my c-spine issues as well as my CM. My question is even though my flow  is fine cant i still be symptomatic. They made me feel like it is all in my head psychologically. So im looking for opinions. Thanks

0 likes, 16 replies

16 Replies

  • diana99730
    diana99730 Tufayo

    Posted

    Yes I had symptoms for 3 years before they finally did another MRI and said it was time for decompression my neurologist said same with first MRI continued to treat me for symptoms but said he wasn't  sure on the second that's when I went back to ns

  • b2wc97455
    b2wc97455 Tufayo

    Posted

    Hi Tufayo, if you have symptom, get the NS to operate you..do not leave it too long..as it will damage your nerve...what we have is a defect its not disease..with defect it can only be sorted with surgery (just like knee or hip replacement)
  • Tufayo
    Tufayo

    Posted

    Thanks. I needed to hear that. Im soooo tired of having to convince Drs that something is wrong with me. I feel like just giving up ya know?
  • b2wc97455
    b2wc97455 Tufayo

    Posted

    Do not ever giving up..cause this is quite significant condition, its debilitating but because you look OK..and health care professionals have lack of knowledge of that you need to update them by giving them a print out..if you are in the US then the information from Mayo Clinic, Cleveland clinic is very potent to show them, if you are in the UK ..get it from Ann Conroy trust..or contact the nurse there, see what the advice would that be..but be firm , but ethical when taliking to doctor, they are there to help the patients..so they do not do you a favour..it is their duty to help you... 
  • Tufayo
    Tufayo

    Posted

    I was going to write out my symptoms as sometimes it cant remember things and im saying the same thing over and over. You mentioned printing out Mayo clinic. Exactly what am i suppose to print out and why?
  • b2wc97455
    b2wc97455 Tufayo

    Posted

    Well, because there are lots of information of Mayo Clinic about CM, if your health care professionals are not aware about this condition at least they will trust the print out of Mayo LCinic because Mayo is very reputable hospital mostly for CM. If you forget what you need to write, google it '' the symptom of Chiari malformation'' you will read it and check it which one that relevant to you , read from this website lots of patients expressed it their symptom check it if it is the same as you for examples this was how my symptom were, because every one different:

    1. Dizzyness

    2. Nausea

    3.Ringing in my ears

    4.Fainting

    5. Unable to swollow

    6.Horrendous headache, earache, neck pain

    7.Weak limbs

    8. Unable to balance my self

    9. Unable to walk properly

    10. Back pain

    11. BLur vision

    13.Aching the whole body

    14. Having problem with speech 

    15. Problem with memory

    16. Unable to control my bladder and bowel (I used to wear panty/pad)

    17. Leg and Arms spasm

    18. Sometimes unable to walk completely (debilating)

    That is just a few that I can remember..put another message, ask every one..what are their symptom and compare it with you- then write it down properly which one is similar to yourself. just tell your doctors it is debilitating your life.

    Express it very passionately how helpless you are and how their help is needed. Make them feel important, show how helpless you are.

    GOOD LUCK ..and GOD BLESS

    • cakal76334
      cakal76334 b2wc97455

      Posted

      I have also a lot symptoms of the chiari..i dont have a syrinx..the csf flow is little bit blocked not very much the surgeon said..but my symptoms have increased over the last 11 months..did you had a surgery? What were your symptoms ? After the surgery did you had some relief? How long does it take to heal from surgery.

    • cakal76334
      cakal76334 b2wc97455

      Posted

      Aha you wrote it above what your symptomes were? Did you had a syrinx if i might ask..the symptoms i have are

      Stiffness in the back (lower back mostly)

      Little bit ringing in ears

      Arms feel heavy stiff

      Legs feel heavy stiff

      Pressure on my face

      Pressure on the front off head

      General stiffness in the body

      Left eye tingling sometimes

      If i rase my arms up they feel heavy..like wearing a phone or a bottle..i can move, walk but it is like my body is stiff..

      Anyone familiair with those symptoms with a chiari?

    • b2wc97455
      b2wc97455 cakal76334

      Posted

      Hi Cakal, you have seen my msg right about how to deal with CM1..all of what you had plus more and more, honestly as far as I can remember..I suffered the worst, I used to cry each day, I could not even walked nor sat down more than 15 minutes..it was a night mare..believe me..but the good news is..there is light at the end of the tunnel...I did not think it would be..but here I am..I tried to set up my own business ''body massage and reflexology'' because that's helped me a lot.. no I did not have syrinx..what did your health care professionals said..don't you like to have decompression?

    • cakal76334
      cakal76334 b2wc97455

      Posted

      B2wc here in the Netherlands it is like you have to fight for a decompression. A neurosurgeon said 2 months ago after a cine mri the csf flow is good and the hernation is still the same. He didnt even listened to my symptoms only looked the screens and said there is doubt if a decompression will reduce your symptoms.

      I could not stay like that..because in the meanwhile my symptoms were getting more and more..progressive as the time went on. So i went to Belgium and Turkey for their opinions 2 chiari surgeons. Both said there is a little bit blockage of your csf flow. Belgium surgeon said in some cases we still operate people like you because even there is doubt ..there is a good chance that physiotherapy ..painkillers ..waiting ..relaxing..and all will not help you... The one in Turkey said i advise you to get operated whether here or Germany or Netherlands where ever you want.

      So i came to my regular neurologist here in the Netherlands and showed him the letter of the Belgium surgeon. He decided to send me to an another surgeon in the Netherlands who might help me. The first one dont want an operation because there is doubt if it will help me..

      All i can say is it is really having impact on my life now. Like you write with sitting in the car..laying on bed..going takig a shower..brushing your teeth..it all doesnt go easy like before..my lower back hurts...arms/legs.. sometimes a nausea feeling coming from my stomach..

      So i hope this new surgeon who is also familiar with this disease will listen to me and operate me. I wait for an appointment with him. I really want a surgery..meanwhile i am scared. Should i be? Does the recovery take long..It is like what many of you know ..that you have to convince the surgeon that you have symptoms..despite there is an chiari and csf blockage on the mris... no syrinx either..

      So it is really difficult..

      Any advices for me with the new surgeon appointment ?

    • b2wc97455
      b2wc97455 cakal76334

      Posted

      Dear Cakal, I am so pleased the first surgeon will not operate you, he/she does not know enough about it..can you need find out from your website, could you not call these clinics finding out which neurosurgeon they recommended, I was lucky enough my neurologist referred me to a local Neurosurgeon in Southampton City - he was very honest when I asked about success story (he has not done a lot) so I asked him to refer me to other more experience one..and here you go I have got referred to Mr Graham Flint - which is the best Neurosurgeon in the UK (they recond)..I had to wait for sometimes but it was worth while...we still keep in touch (Mr Flint and I) He did not put dura on mine, to avoid more complication. could you not call these clinics below and ask them if they would be able to give you an idea who would be the expert..once you have got the name..find out their port folio, your country has such excellent health services you just have to be persistent and get involved, be assertive, firm but cooperate,  say to them that your life is in their hand..tell them that you know some one mother died (My mother) due to lack of knowledge of the health care professionals about Chiari..also tell them it is their responsibility to look after you and your quality of life, in the meantime google it if you have local or national organisation which dealing with neuro...

      Oosterparkbuurt, Oost

      Tweede Oosterparkstraat 274

      1092 BV Amsterdam

      The Netherlands

      Phone number020-4602290

      [THE Hand Clinic]

      2. THE Hand Clinic

      [5.0 star rating]

      1 review

      SurgeonsZuid Oost

      Hettenheuvelweg 16

      1101 BN Amsterdam

      The Netherlands

      Phone number020-3420430

      [Meijer Orthopedie]

      3. Meijer Orthopedie

      [4.5 star rating]

      2 reviews

      OrthopedistsHelmersbuurt, Oud West, West

      1ste Constantijn Huygenstraat 68

      1054 BW Amsterdam

      The Netherlands

      Phone number020-6180555

    • cakal76334
      cakal76334 b2wc97455

      Posted

      Hello b2wc,

      The first surgeon is unfortunatelly experienced in this disease that is why i went to him..but i am really diasppointed and confused..dont want to help me..dont listen..did not check me neuroligacally..said the csf is going good through the foramen magnum..it is like he has no empathy or just dont care..

      The surgeon in Belgium said you are a doubt case if we operate.. will we fix you or not is not 100% it is 50% ..that is why he doesnt want he said about him..

      All i know is having those symptoms..and i dont get better..stiffness..heavyness..pressure on face..ringing in ears and so on..

      Aynway the neurologist sended me to a good surgeon called Andre Grotenhuis here..although i heard from people here he operated people with chiari i will ask how many and all..but on the other hand i am tired of searching and searching..

      He is good and kind i heard..so i must really ask for an operation..i have fear for the operation but on the other hand my body really want it ..is it scary? Does the recovery proces take long..anyway i must really ask for help to my new surgeon like you say..thx..

    • b2wc97455
      b2wc97455 cakal76334

      Posted

      Look Cakal, believe me Neurosurgeon who refuse or dubious to help their patients is not worth for you to be operated by..some one might not as experience as others but if they have the gut and heart to do it - they are so confident they are able to do so ..they are health care professional s they sworn an oath that they ought to help - its their calling...being health care professionals mostly a surgeon is a calling, you have to let them know that you trust him..make sure you contact ''pro bono legal organisation''  (just in case) I thought netherland have a fantastic health care system..but do not worry..you trust in GOD?  I will pray for you..honestly..just go to A&E if you can not put up with your pain then they realise how terrible it is for you..write them a letter you like to take a chance to have surgery..yes..the recovery quite hard for at least 6 weeks after that..you will be laughing..you will have your life back (ONLY IF YOU TAKE EASY AFTER)

    • cakal76334
      cakal76334 b2wc97455

      Posted

      Yes you are right about that..it is not worth to go for him..even if he is experienced he is not the only one in the country..

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