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4 month post op i think

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leanne73120
leanne73120

I has decompression in september 2017 i was fine for first wee while but past 4 weeks iv had bad head pain in left side near temple when i move head sometimes to left i get pains in neck or head anyone else have this problem? My ns app isnt till march 12th iv been pit on diferent meds n still dont really help

0 likes, 27 replies

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  • cakal76334
    cakal76334 leanne73120

    Posted

    Hello Leanne where are you from?

    Did you had syrinx? Was the operation succeed in september 2017? Did they opened your dura and put a patch?

    About the head and neck pain..it could be from that and also not..ask a new mri..

    Did you do exercises for your neck muscles ?

    • leanne73120
      leanne73120 cakal76334

      Posted

      No syrinx from uk no exercise wasnt told to do any an iv not been to see my ns yet
  • kathy14843
    kathy14843 leanne73120

    Posted

    Go get neck spasms and was given muscle relaxer. And take Tylenol. If concern contact your Dr office. Praying you heal. My Dr said it can take a year. I’m Post operation 6 weeks. As long as I do not overdo it I get better each day. 
  • j031017
    j031017 leanne73120

    Posted

    Hi Leanne

    I hope you're feeling a bit better than you were, and that your appointment brings some relief.

    Can I ask what factors were considered when deciding whether to have surgery? I apparently have 8mm herniation with small syrinx

    • jacqueline59201
      jacqueline59201 j031017

      Posted

      I have Chiari Malformation and syrinx on the spine and am symptomatic.

      i am still debating whether to have this operation.

      I do not know the size of my herniation but do know I have no space and that my spinal canal is narrower than average.

      Can I ask what symptoms you've all had? 

      I suffer from migraines and  sharp intense head pains. Sometimes I get tinnitus, I have frequent neck pains. I have a prolapsed disc in my neck from coughing and I get vertigo and have had a few occasions where I struggle to swallow.

      Im trying to avoid surgery, unless some tells me all their symptoms or most go after recovery.

      Any opinion on this would be much appreciated.

      thank you 

       

    • j031017
      j031017 jacqueline59201

      Posted

      I have terrible neck, shoulder, arm and back pain - both muscular and nerve related. I have some balance problems and trouble swallowing and breathing when lying flat. I find it hard to get my words out sometimes and am very clumsy. The head pressure is the worst, someone on this forum once described it as a balloon inflating inside your head and that's a perfect description. It makes my ears feel blocked and they ring quite often. Things seem surreal, foggy. I think I also have reduced sensation because I'm always burning myself and don't realive straight away, and I have no tickles whatsoever!

    • j031017
      j031017 jacqueline59201

      Posted

      The NS I saw in October said they prefer not to do it as it's a serious operation and success rate isn't great but obviously they do it in some cases. Im seeing a different NS at the end of March to discuss options. I'd really rather not have surgery but am unsure if I can manage symptoms indefinitely either. What did your consultant recommend?

    • leanne73120
      leanne73120 j031017

      Posted

      My surgeon said it was 50 50 i could either get op now n hopefuly releive some preasure as was affectin my sight aswell or wait till something bad happens n have no choice basicaly he said i could wake up 1 day n be completely blind but not to panic as its just the pressure n once had op i shud beable to see again
  • leanne73120
    leanne73120

    Posted

    Hey im now 7 month post op still feel rubbish still get head aches not as intense still feel dizzy sometimes got my first appointment next week. So wel find out what the surgeon says hopefuly i dont need to go for 2nd part of the op. Were he cut the bone from my skull feel rank like a hole in my head very strange i cant even brush my hair daily as my head is very sensitive on strong meds but tbh they dont seem to help much.
    • j031017
      j031017 leanne73120

      Posted

      That's terrible, it definitely seems the op is not a cure all, I would like to think after 7 mths there would be an improvement. Are you able to work?

      Hopefully your appointment will help you get things straightened out

    • leanne73120
      leanne73120 j031017

      Posted

      Slight emprovement headaches arent as bad diferent part of my head but still see myself lying on the couch haven to close my eyes and sleep because im in so much pain. I take tramadol and gabapentin but still feel crappy. Hopefuly they give me some answers i couldnt wait for stitches to come out to brush my haor again was ok for couple weeks but now i just cant its to uncomfortable
    • Stable2309
      Stable2309 leanne73120

      Posted

      Hi leanne73120

      We haven't caught up for a while. Sorry to find your still experiencing problems, especially the headaches.

      I had my 7 month anniversary last Wednesday. Still get headaches, and still have fatigue, memory & cognitive issues. Working 4 days a week, but no where near levels pretty diagnosis. Just taken neuropsychometric testing to find out how poor I am.

      Hope you get progress

    • leanne73120
      leanne73120 Stable2309

      Posted

      Ok still dont understand but thx lol i googled it iv got hosp this mornin so see what he says
    • Stable2309
      Stable2309 leanne73120

      Posted

      Unfortunately this condition means we face a very long marathon, as nothing appears to be resolved quickly

      Good luck with next step on that journey.

    • leanne73120
      leanne73120 Stable2309

      Posted

      As far as im aware its a condition that never goes away we have an operation and it just trys to stop oir symtoms getting any worse but wel always have it wel always be chiari sufferors (zipperheads)
    • leanne73120
      leanne73120

      Posted

      So folllow appointment didnt give me any info to be homest was a complete was of my time all he said was u need another scan fatigue and the pain in my head is nothing to do with my chiari bloody joke
    • Stable2309
      Stable2309 leanne73120

      Posted

      Yep, sounds familiar. I was told by NS everything physically had been done in surgery and passed back to neurologist.

      The headaches and fatigue are far too familiar.

      We must stay positive and look for best ways of coping.

    • leanne73120
      leanne73120 Stable2309

      Posted

      Oh an fatigue isnt 1 of the sytoms and neear is my new head pain coz iys at a diferent side
    • leanne73120
      leanne73120 Stable2309

      Posted

      Just fed up now thot id feel normal guess this is normal for me now
    • leanne73120
      leanne73120 Stable2309

      Posted

      I waited 45 mins after my appointment for him to say yes your scar looks good your tiredness and headaches thats ur getting is nothing to do with chiari an u now need a new scan see u in 6 month was a waste of my time
    • Stable2309
      Stable2309 leanne73120

      Posted

      A distressingly familiar story. I'm on a round of new tests and analysis that includes :

      Neuropsychometric test

      PED test, which apparently tests for dementia

      Sleep apnea to see if my sleep paterns mean insufficient oxygen to my brain

      Collectively I am not sure if any of them are addressing the underlying cause, just some of the symptoms.

      Have you got any next steps apart from hurry up and wait another 6 months for next MRI.

      Which in my limited and worthless opinion is guidance worth the square root of bugga all to you.

      Question: why is it do difficult to get meaningful advice And guidance with Chiari bloody Malformation.

    • leanne73120
      leanne73120 Stable2309

      Posted

      6 weeks later still waiting for my mri results to see if all went oki joke now proud owner of my chiari warrior tattoo tho zipperhead and proud lol
    • Stable2309
      Stable2309 leanne73120

      Posted

      Familiar story of delays.

      Saw neurologist on Tuesday who had not given me the results of neuropsychiatric test from March!

      As much use as a chocolate ashtray this lot. Still no closer to giving any reason why still have issues.

      Love the tattoo idea. Be load & proud, I am a chiari warrior! Although then I have to explain chiari again...

      Hope scan is good for you.

      Keep fighting!

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