I had decompression done March 2015

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After my surgery I did get more movement back on my left side but I'm still enduring a lot of pain numbness and pressure still down my entire left side.ive had an mri done 3 times since and it still shows and open syrinx my brain. My neurosurgeon has talked about putting in a shunt but I said no more. The only medication that allows me to function is gabapentin 600 and oxycodone 15mg.and ibprophen 800 3× a day. But now I'm starting to feel nausea with the oxy.i don't want anything but the pain and pressure is unbarable without them. I tried lyrica and couldn't deal with the pain so I stopped taking it and got back on my gabapentin. I'm tired of my life not being normal.i was a very vibrate 38 year old salon owner. I can't do half the things I use to because of the pain. And I was told I would be okay after 3 to 6 months.im very frustrated.

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  • Posted

    Hi Wanda I was told same that u would be fine after decompression surgery. It wasn't explained at all how I might feel. I don't think life will ever be the same, but I am managing to do little part time job, I'm older than yourself, I have good and bad days. Maybe the shunt is next step for you. I have heard about them and hope someone on here can give you information on it. I wished I had known about this site when I had my operation, I wouldn't have felt so isolated. X
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    • Posted

      I know helen11122. I felt the same way. I was parallized for up to 6 months before my diagnosis. And went to Charleston and was told in 15 minutes off a old mri. If I do the shunt I may lose feeling in my left leg and I have not gotten feeling back yet. So this is why I don't want to do it again. There's no fluid on my brain Thank God. But I have not been the same. And unless someone has this illness they don't understand how we feel. It's literally a battle to move at times.
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  • Posted

    Mine was also done in march 2015 I was 39 when I got it done I say the same thing as u I want to be normal again I had a great job with dull insurance that now my doctors are sayin I can't do no more I have spasm or seizures I faint and it's almost a year later I'm getting back all the old symptoms too I will not go back no way I was in surgery for 8 hours my husband knew something was wrong but I wasn't told what happen I woke up 5 days later with these shakes that I still have to this day ..I hope u get better and don't be like me and get put on depression pills some make it worse ... I'm here if u need a ear..
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    • Posted

      Hi Melanie, I am sorry, can't help wanting to knkow about your story, how come it come back again?/...did you tell your gp or your neurologist..what are they going to do now..after decompression..are they keep an eye on you?..are you on medication at all now?..geeze..I am really feel for you..do you feel numb..how is your balance?..are you feel pain as well?
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    • Posted

      I have gone back to all and doctors they are putting me on ssi. Disability and I'm on 4 meds. To help no never got my balance fully back I even went through therapy . But I'm trying to get a mri done so we can see what damage is in there
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    • Posted

      I to Melanieheather had to be put on depression pills. I like you had a great life until now. But I continue to lean on my faith in God daily for my healing and pray that there's some kind of help more for us. I've even told my pc doctor I don't want to accept this part of my life. It's very complicated hearing different testimonials from the surgery of others but I will say this. We're STILL ALIVE AND NOT DEAD SO I COUNT THAT AS A BLESSING. I WENT TO CHARLESTON MUSC FOR MY SURGERY. WHICH WAS SUPPOSED TO BE 2 HOURS TURNED INTO 4 BECAUSE OF THE AMOUNT OF FLUID ON MY BRAIN. GREAT LUCK TO YOU.
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  • Posted

    Dear Wanda,

    i am so sorry to hear about your condition, do you live in the UK?, SURELY the decompression must given you lesser pressure (I mean less headache- even though you still have numbness, do you have any other condition beside having chiari?, did your NS explaining to you that the goal for decompression was only to reduce the pressure of the obstruction on the CFS flow?..I am unsure as every one is different it seems that each NS lso different, I seen 3 neurologists and 2 NS and they all practically said the same; 1. decompression will only help to reduce the headache if there is obstruction on the CFS - hence it is necessary to have a surgery. 2.Preventing to get worse. obviously depending on each individual a good surgeon will definately make sure they cut enough skull..etc..etc..remove enough..tonsil..etc..etc..patients also listen the advice given such as: unable to do like normal can do after the surgery such as: lifting heavy thing..jumping up and down...roller skater..roller...coaster..anything that..going back to work to soon....I will my surgery son, I heard quite lots of them from Walton Centre (Liverpool) Nottingham  and Brimingham have ABOUT 98%sucess rate - it means that they are able to fully enjoy their quality of life back..perhaps you would like to be refered to any one of them if possible if you are in UK ask your GP? Please keep us update..as it is upset me to think another chiarian suffering..and we are so helpless..a part of try to think possitive..do not give up..just be assertive ask your health care professional to help you...its no good to be kept on medicine all the time with chiari because its our mechanical issue its not a disease..would your try to take grape seed extract, omega oil and magnesium oil spray..it will take about 30 days before it start working though..it reduce the pain...I ll pray for you Wanda..we all struggling..but keep positive..it will get better!!!!

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    • Posted

      Thank you so much for that information. Yes I know that medication is bad after being on them for so long. But what I'm on is the only thing that gives me comfort. The pressure is still there. Not as bad as it was but there moments when it is unbarable. I'm in South Carolina. And it's very hard to find a doctor that really knows about my condition. This is why I had to go 3hours away to seek help. I am not going to give up I battle daily. I must say though I do get frustrated. But I will try what you've recommended. Thanks so much.
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