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Recurrence of Chiari malformation

Posted , 60 users are following.

yeltzer
yeltzer

I had decompression 6 years ago for a servere malformation. Recently I have been getting similar symptoms to those I had before my operation . Can a malformation grow again after decompression? I would not like to go through the operation again.

3 likes, 194 replies

194 Replies

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  • Kamatsu
    Kamatsu yeltzer

    Posted

    I see my GP tomorrow.    He had done everything he can to help me, but the person in charge should not be there.  I know someone else that went to the ER to get help, were there 14 hours and then had to return the next day and spent another 10 hours before getting the MRI results.   This has to change but I can't rock the boat now or I will never get an appointment.

    Thanks for your input.

  • Liz1975
    Liz1975 yeltzer

    Posted

    I had a cranial subocciptal with C-1 Laminectomay and duraplasty 6/13. I then they had to repair my pseudomeningocele, duraplasty and put in a fat grast.  That was about 2 months after the initial surgery. That surgery caused CF build up in the back of my head, where they took out the bone. So I went back in and had a shunt put in.  This did not fix the problem. So they had to add a Y connector (another shunt) to help take out the CF.  My shunt has been adjusted numerous times, but I had horrible pain, like my head is in a vice.  The only thing that I was told that can be done is that they can take out the Y connector and see how that goes.  However when I did not have this in place I was getting infections. So basically Im stuck in a sort of limbo. There is never a day that I do not feel head pain. Some days it is worse than others and Im stuck in bed.  I try to have somewhat of a normal life, but my brain just wont let me. Im so thankful that I have found you guys
    • Kamatsu
      Kamatsu Liz1975

      Posted

      You have been through so much.  I just hope that things stabilize for you soon.

      Do you wear a collar when sleeping?  I find that it is helpful.  Also, I elevated the head of by bed. I have more pain when I'm laying flat without some sort of support.  

      Did you have a syrinx as well?  I had one and it collapsed after the laminectomy but unfortunately I have another one that is giving me grief.  I am having more tests in the 28th.

      Happy Easter

    • Liz1975
      Liz1975 Kamatsu

      Posted

      Good evening Kamatsu,

      My gosh, if it isnt one thing its another.  So sorry youre experiencing such discomfort.  I hope the test have good results so you can feel better (well do us CM ever feel 100%) Please let us know what the results are.

      I did not have a syrinx, this is the first I have heard of this procedure.  The neurosurgeons at Stanford have basically responded like every other Dr on this page, so never wracking.  I live in central CA and there are no neurosurgeons out here and if there are they are not reputable.  

      I hope that we all could some day find relief and soon. All of your post have made me feel that Im not alone, Thank you

    • Kamatsu
      Kamatsu Liz1975

      Posted

      I live in the Toronto area.  My surgeon has amazing credentials, the only problem is getting an appointment. I see him the end of May and will find out if he feels that surgical intervention will be helpful.  It's a hard call as I don't want to deal with the issues I'm dealing with and of course I don't want surgery!  The problem with a syrinx is that if it keeps growing then there is the possibility of becoming completely disabled.

      I hope you can be evaluated by a competent Chiari specialist so you can get the help and answers you need.

    • Liz1975
      Liz1975 Kamatsu

      Posted

      Im so happy to hear that you have found an amazing Dr. there are so few of them.  May will be hear soon and I really hope you will find some relief.  Usually when they do not know what else to do with you, they just send you to the next specialist.  This is what my neurosurgeon did to me.  I spent about 3 years going from specialist to specialist and the only result I got was from a young intern at the neuro opthamologist dept at Stanford.  He said that I have a whole in my eye. That has nothing to do with with CM.  So after hearing that I gave up.  The dr said to start from the beginning and see what the results are.  Told him no thank you. I spent so much time away from home and my daughter and for nothing. 

      Take care

    • Kamatsu
      Kamatsu Liz1975

      Posted

      I know what you mean being referred to one and then another.  It is very frustrating.  There has to be someone that can help you.  Just don't give up and demand the care you need and deserve.  There are support groups that will recommend doctors in your area.  When I told my brother, (who is an orthopedic surgeon) who my neurosurgeon was he said that he checked himout and that I couldn't have anyone better.  Sure made me feel good.  I'm hoping someone will be able to refer you to a knowledgeable Chiari surgeon.

    • Kara9914
      Kara9914 Liz1975

      Posted

      Look up Dr. Batzdorf and Dr Langston Holly at the UCLA medical center in Santa Monica. They are very knowledgeable in  Chiari. 
  • yeltzer
    yeltzer

    Posted

    Well after all this time I think I have sorted my "Recurrence" out. I went for a Lumbar Puncture (spinal tap) Friday. The Neurosergeon reported that the CSF pressure was a bit high but due to my size, being obese, he wasn't particularly worried. However he did draw some fluid off for analysis. Funnily since then the symptoms have gone. Wonder if drawing off some fluid reduced the pressure? Will I replenish the CSF lost and symptoms come back? Time will tell.

     

    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Hi Yeltzer,

      I have the same issues, after decompression I had another 3 LP..it seems I am recovering now...I hope I do not need to do another LP...I recommend others to have this perform if they are still sufferring...

    • yeltzer
      yeltzer b2wc97455

      Posted

      Did you have any follow up procedures after LPs, like pressure reduction or anything?
    • yeltzer
      yeltzer

      Posted

      Told no action necessary I was told. Neurologist is claiming its migraine, all the classic symptoms of CM but told migraine, such rubbish.  

       

    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Wouldn't you think it is best to urge them to MRI/Scan you again? just to ensure that everything is ok?

    • yeltzer
      yeltzer b2wc97455

      Posted

      They did when they realised I never had an MRI after decompression back in 2008 but were happy with the MRI results. Had a lumbar puncture after this and they found pressure was high but still just inside the accepted level (only just).
    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Hi Yelt,

      Are you still working part time?

      So, how are you coping now, what is you rLP level pressure?

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