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I live in Canada and I will just say the doctors here are not that bright. To make a long story short Ihave been sick and in pain for years, and the doctors here kept telling me that there was something wrong with me but they ran every test you could ever think of and they would always come back negitive. I dont know if that has happened to anyone else on here, but after a while I thought I was loosing my mind. That was up till just over a year ago when I had yet another CT scan and thats when my doctor told me I had Chiari Malformation and that they would send me to a neurologist. Well that was over a year ago and I have heard nothing from anyone and I pretty much have suffered alone in this because no one knows how much pain I am in and I feel like I am annoying my doctor, but enough is enough. I really dont know what to do, is this a normal wait time to see a neurologist?? should I just suck it up?? Are the episodes supposed to be so intense and last all day or for a couple days?? The episodes werent always this bad but they are way worse now and everytime I have one it's always worse then the last. Please if anyone can help me it would mean the world to me.

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  • Posted

    Hi Elizabeth

    I'm in the USA, and I went through the same as u. It took me a very long time and three states to find an expert in chiari. I know exactly how u feel and the pain. It well get worse. If u can't find a doctor in Canada r u willing to travel to USA?

    Hope

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    • Posted

      Hello, My Mom is really struggling, she has had the decompression surgery. conditions are getting worse by the day.   WE need a great Chiari doctor that can help her.  Her surgeon says the surgery was a successs.  we dont know what to do besides get her to someone else.  WE live in Nc  but will travel anywhere to get her some help.  Can someone suggest a Doctor that will help her?   THank You
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    • Posted

      Hi shanepleasehelp,

      I found a great group of doctors that are experts in chiari in Aurora, Coloardo. The NS that I saw has retired, but there r others in the group that can help your mother. They well test her and give results within 2 days and set the surgery if needed. I do recommend this group more than Mayo clinic. Please let me know if u need any more info and good luck.

      Hope

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    • Posted

      Thank you so much for your quick reply, is there a phone # or website than has contact info for these doctors? Thank you so much for your help...
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    • Posted

      My daughters neuro is in New Orleans, that maybe closer to you than Colorado.  Dr. Najeeb Thomas he was fantastic, kept us well informed and was able to do the surgery within a couple of days. 
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    • Posted

      how long ago did ur mom have decompression? I had my 6 yrs ago and it took almost 4 yrs for all the pains and aches to subside. Your mom went through a very tough surgery and this is going to take some time to recuperate. But it's alright to look for other medical advise.

      I had decompresion in Texas, had alot of problems after, I was not able to find a doctor to help me as they would say that the decompression was enough for chiari. Went to Arizona, no help. Finally, in Coloardo found the chiari group and they found there was something else that had developed. They were able to correct it. After physical, speach therapy and re- training my brain

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    • Posted

      she had the surgery about a year and half ago.   She has really struggled since.  Constant head and neck pain.(8-9 Level)  dizzy,  sick at her stomach all the time...has lost alot of weight.  chokes on all her food, she can choke on just drinking water.  Can not do anything now...she cant hardly leave home.    Never sleeps more than an hour or 2 at most. Wakes up and thinks her head is about to explode.   Sometimes now slurred speach and has done everthing but given up.  It is so sad to see. Its driving me crazy. She is a very tough lady..Seems it is getting worse everyday, and we are just worried to death about her...Noone wants to see her since she has had the surgery and her surgeon says the surgery went well.....She was better before she had the surgery. We just need to get her to someone who can help her and so far that seems to be alot harder than what we thought.   WE are open to anyone that has advice or who has experienced any of these issues after surgery......Thanks     Hope May I ask what they found was the problem after your surgery?       WE are trying to stay positive, but its real hard.......THanks
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    • Posted

      I had severe CSF, and had a blood patch.

      I understand how u feel, my husband and son were my caregivers and I gave them a hard time. They were sad that they couldn't help.

      Tell ur mom not to give up, there is always hope. It well take time. Find someone that can relieve the pain, but not just meds, as some of them can make her a zambie and not relive the pain.

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    • Posted

      Hi Hope255  I have been gone for a while from here but I felt obligated to respond to you because you have been so nice to me.   I have horrible news My Mom passed away on may 11th.  we are so devistated.  As u know she had the surgery and hardly had any good days since that day. I hate to say it but she never really recovered after what all neuros called a successful surgery.  she was looked at by many professionals post surgery including Duke and they said the surgery was a success.  She just kept all the symptoms dizzy, horrible headaches, neck pain, swallowing, balance, memory loss, confusion, fatigue.  Worst thing was the headaches and neck pain, and sleeping..as soon as she laid her head back she would rest maybe an hour and just wake up with a busting head an neck pain..She was my hero and I miss her so bad.. She is finally resting in heaven with no more pain but I felt I needed to tell you thank you for trying to help us.  You replied to all my post and I really appreciate you.  If u remember we starting taking her for prolotherpy and stem cell treatments. she had about 6 or 7 treatments about every 6 weeks.  It was our only option at that point after having nerves burnt at duke and that didnt help.  So we found prolotherpy on our own.  It was around 2500 bucks each visit {flordia}  Insurance does not cover this treatment..  It would take her around 2 weeks to recover and she would have some good days  maybe 3-6 decent days but the headaches would start coming back..  The last time she went she died 1 day after in a motel room trying to recover before she come back home.  So im not sure what to think about that..But it was our only option at this point.  If someone ask me about my thoughts whether or not to have chiari surgery my advice would be to research research research your neuro and make sure you have the right surgeon and then research so more.  I think my mom was just not strong enough to recover from such a surgery at age 66 at the time and so little and weak.  I wish all folks who suffer from Chiari the best and I hope research finds out how to cure this awful disease or whatever it is.  Hope thank you for trying to help and good luck.. I will continue to pray for who suffer from Chiari...
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    • Posted

      My heart aches for you. I'm so sorry for your loss. I have also been away and I just read your entry. I too loss my mother in March. So I understand what you are going through. May happy memories carry you through this sorrowful times. I cannot take away your pain, but I can listen if you want to talk.
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    • Posted

      Hi Hope255 so nice to hear from you..Just needed closure and just felt like I needed to tell you thanks, and how much you meant to me during such a hard time. You were there for me when I needed to talk to someone. It was very nice to hear from a stranger it's such a hard time who cared, and you were there for me.. thank you for being there and God bless you. THANKS SHANE

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      I read your post, but some was deleted. I was trying to contact you by private message, was unable to. Do you have any other way to communicate ?
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