Not going through the surgery

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Hello, 

I have CM 6.8 mm. and I have been through a roller coaster. I have seen 6 Neurologists and 2 Neurosurgeons that specialize in CM. I was told they cannot guarantee I will benefit from the surgery. What I found helpful is Craino therapy and acupuncture. I'm also careful about my weight. I'm still on Topomax which helps with the headaches. I use to get seizures/ muscles spasms everyday and now I'm getting them once a week. I'm careful about not lifting heavy objects as I realized this will trigger my symptoms. Stress also triggers the symptoms so you want to try to reduce any stressors in your life. I've done a lot of research about the decompression surgery and I'm not convinced it will cure or forever take away the symptoms. I will try other alternatives before I have a huge hole cut out and my c1 removed. 

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6 Replies

  • Posted

    Hi,

    Well, I hate you don't have more positive information from your doctors.  I'm not surprised though.  Based on my knowledge, you will continue to have problems and it will be inevitable that you need the surgery once your csf flow is blocked.  Chiari damages your nerves and the longer you wait the more damage.  My doctor only took part of the c1.  I guess it depends on your situation.  I don't know where u live but another opinion is the only thing I can see making certain you have a cine MRI.  I don't like surgery.  Sometimes there are good outcomes.  I'm unfortunately, in pain constantly.  Age and other factors play a big role in your outcomes.  Take care and I hope u find the answer for you.

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    • Posted

      Hi Apple62,

      Thank you for your feedback. 

      I did have a CINE done recently and the Neurosurgeons told me I do not have CSF blockage. I had a second opinion and was told that a decompression surgery would not guarantee improvements. At least the Neurosurgeons were being honest. In the mean time I hope to find other alternatives that work before I have a big surgery that can lead to more complications. I'm only 40 years old and my fear is that I'll be disabled for the rest of my life if I end up having the decompression surgery and I don't have any benefit from it. I'm hoping that in the near future there will be a more advanced /different approach on how the surgery is performed. 

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    • Posted

      Hi,

      In my case my herniation was 13mm and had flow blockage with symptoms.  Based on what your saying, I think you are wise to wait. I was 60 at the time of my surgery and symptomatic for about six years.  I'm in constant pain and my head wobbles.  I don't wish that on anyone.  I just hope you don't get nerve damage.  I hope things work out for you.  You might check out Chiari U.K. On FB it is a really good group of people with a lot of knowledge.   Let me hear how things go!

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  • Posted

    Hi Avella,

    I agree with Apple here..the soonest you have surgery the better...I refused surgery as I was scared...but after 14 months I got horrendous..blacking out and house bound --I finally decided having surgery..and here I am after 13 months post decomp. I have my life back...my opinion is..the soonest you have that done the better, unlike diabetes or cardio vascular disease...they can be managed by drug..but what we have if defect..just like knee or hip issue that have to be done by Op.....so..keep positive..do not leave it too long though..call Ann Conroy trust they really can give you a good idea...

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    • Posted

      Thank you B2wc97455 for your response. I live in California and I already got 2 opinions and was advised that I may not benefit from the surgery. The Chiari Specialists in California are supposedly the top Neurosurgeons in my state. If they are uncertain that I may not benefit from such an invasive surgery, then I'm going to keep on trying other alternatives that can improve my symptoms. I've already heard success stories from others who did not get the surgery and used other alternatives and are now drug free and symptom free. I am praying to God that I and many of us can go that route. It breaks my heart to read so many people with this condition and they go through the surgery and they only benefit from it for a short term and end up worse. Some come out even worse after surgery and that terrifies especially when I've been told that I may not benefit from a drastic surgery. I am so happy you have a success out of your surgery. Do you mind sharing the surgeon's name that operated on you? Maybe I can get a 3rd opinion and see if my insurance will approve. 

      Thank you. 

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  • Posted

    Hi Evella,

    I dont live in the US, I am in the U, MR Graham FLint is he Top Neuro Surgeon at the Queen Elisabeth Hospital in Birmingham - West Midland, you could write to him though..ask his opinion,  I think the Mayo Clinic in the US is the best... I refused to be operated by one of the NS in my area as he has only done a few as Mr Flint does once a week...and has such a great success rate 90%..yes, there are some who had to do second or even thrice opt, I think because they do not patient, when they feel better they go back to work straight away...Mr Flint told me not to even lift a kettle at least for good 3 months..I am on my 13 months post surgery, now I am able to walk, 2 miles each day, pain and drug free - but in my opinion from research from Mayo Clinic, NHS..the way to make it better is decompress... if you think that the medicine can manage your symptom, then YES..it will be silly to have decompression, but I was so silly enough to wait too long, because initially I did like the idea of having my skull being cut, but..I made the right decision, otherwise..I might still be a house bound..and not enjoying the life I have. Just listen to your own six sense..if you think you OK with no Surgery then be it...I hope you do not go through what I went through...GOOD LUCK

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