My Experience with CS

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Hello, I am new to this forum as of today and so very glad that I found you folks! I thought I would share my journey to this point with you.

Last year, I started seeing a new doctor who was wonderful due to what I thought was severe eczema. She referred me to a dermatologist who prescribed a heavy does of steroids for a month and then Imuran. It cleared what I thought was the condition up wonderfully, but I started to feel numbness in my fingers (both hands). So I went to my Mom who is also a nurse and whined a little. She was shocked that this doctor prescribed this medicine as it is also used for some oncology patients.

Things quickly began to go downhill for me, I also found out about this time I had a vitamin D deficiency, so I began a regime for that. My family doctor really thought that these sensations were coming from the lack of vitamin D. However, it was soon that I felt like I was walking like a drunk and then shortly there after started using a cane then requested a handicap tag.

It wasn't until I made the request with my doctor for an MRI to find out what was going on that the diagnosis was made. And then I was in to see a neurosurgeon on a Monday, she wanted to operate on Tuesday, due to low potassium the operation was pushed off until Wednesday.

Its now three months after the surgery and the two level fusion is healing nicely. I am walking independent of a cane, but still have the sensations in my hands and feet without the heavy feeling. I found a very interesting article that put everything into terms that I could understand and found out that my case was a severe one. They have a scale of 0-5, 0 being normal or no indications up to 5 being paralysis. I was at a 3, which was when a walking device was needed on my way to a 4 which was where you were unable to work.

I know this forum is based out of the UK and that your medical requirements are much different as I am in the US. However, I would love to hear from others who have had fusion and where you are at this point in the journey.

I look forward to learning more with everyone - Michelle

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10 Replies

  • Posted

    Hi Michelle,

    this is a really great site. I only discovered it myself a couple of weeks ago. Seems that misdiagnosis is a world wide thing. At present I'm undergoing physio but he can't tell whether I have a trapped nerve or a frozen shoulder. Apparently nearly everyone gets some form of CS with age but you really have to push to get things done. I don't want to live a life on pain killers and opiates. It's awful not sleeping because of the shoulder pain and being like a zombie the following day. Good luck. Hope you're in a nice part of the US with plenty of healing sunshine.

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  • Posted

    Iv found sleeping with rolled up towels under my top pillow either side of my head, with some sticking out of the end so I can tuck it under my neck (the space you get between neck and pillow) so helpful and swapping sides to stop my neck getting to congested with inflammation.
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  • Posted

    Sounds good well worth a try. Wonder if anyone has tried one of the neck and shoulder braces. Be nice to see if they're any use.
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  • Posted

    hi every one glad to be back on the site had a bit of a bad week. but now I am a bit better glad to see a few new members have joined as I think it is a good thing as every one is different where their pain is concerned and new outlooks are a good thing. as I think what works for one does not always work for another person. I have just had what they call a facet joint injections but they have not worked for me so will not be having them again as I think if you are in that much pain you will try anything with in reason I do not like taking "drugs" but over the years my pain is getting worse I have been told that I might end up in a wheelchair I"ve had pain since I was 10yrs old so I do not know a day without pain as I had a steel rod fitted @ that age but when you are young you over come that pain as you get older it becomes harder to cope but I have always said there is always some one worse off than you and it might not seem like it at times it is true. rolleyes
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  • Posted

    It always sounds bad to think you are not the only one suffering, but it's good to hear any ideas that can help in making life a little better.
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  • Posted

    hi BLADEBOY nice to hear from you,i can see where you are coming from when you said you do not want to start taking pain killers and opiates but some people have to take them every day and night even if they do not want to, you might want to try meditation some friends of mine said it helped them it did not take the pain away but it relaxed them and therefore made the pain a little bit more bearable also you can try and put Putnam royale into your computer and it will bring that site up it has different items you can buy to make your pain a little bit more bearable i hope this helps you a little bit please let me know how you get on also look at the things you use in the house every day things can some times set it off if it is that bad any way good luck what ever you choose
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  • Posted

    I understand what you say. Just seems strange that in 2014 there isn't a one for all cure all for pain. You've obviously suffered and know the meaning of pain. Me being just a man am a little bit wimpy sad . It's also that I haven't as yet had a proper diagnosis. I do have CS but not sure if it's a trapped nerve or frozen shoulder. Anyway the GP is going to send me for Ultra Sound so I hope to be a little clearer after that. Pain is with me 24/7, more of a dull painful ache but it brings me down.. Keep in touch.
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  • Posted

    hi I hope your ultra sound goes ok for you and you find out one way or other what it is exactly what is giving you pain I to have a trapped nerve mines in my neck and I am for ever going dizzy (hubby says it"s cos I am blond) smile I wish there was a one for all cure for all pain I would have signed up for it years ago but now it is who I am now I would have been in a sorry mess if I did not have the operation so I am in a way grateful for what they did for me as it was such a long time ago because there was only four of us who was basically we were guinea pigs and we were in hospital for 3-1/2-4yrs so it was a hard time for all familys concerned so I know how you feel when you say you have pain 24/7 when you have an operation you expect to have a bit of pain but when it does not go away ever you can get down and even depressed because outwardly you look ok why don't you ask your GP to refer you to pain management clinic I went and meet some good friends we meet once a month and have a meal and a catch up but they also give you good advice as well OMG! I^ve gone on a bit so will say good luck with your ultra sound rolleyes rolleyes
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  • Posted

    .Really well put, I appreciate all you said. Good luck for the future. Still I guess being blonde has a little to do with it. lol
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  • Posted

    funny that is what hubby says toowink some days you will be better than others but what you should say is "not what you can"t do but what you can do" even if it is just something small wink
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