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Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

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Suggest treatment for klippel feil syndrome

hi my name is kristy and im 27 i been diagnose with klippel feil about a year in a half ago they said i had it since i was 18 but now it got severely bad im in stage two for nerves in my spine and body and also my neck bone and spine bone im at a lost all i have is therapie and pain killers is there any other way to have releaf from evryday pain and i know its gonna end up killing me as i was born a sick child and allways been sick my whole life please help me with knowldge about klippel feil what to expect how worse is it gonna get and what can i do
Mon, 17 Jun 2019
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Neurologist 's  Response
Hi,

Sorry that you've been diagnosed with KFS, however, you should know that KFS as its own entity rarely causes early death and people can and do lead relatively normal lives albeit with restrictions due to their musculoskeletal abnormalities and sometimes other organ system involvement. In terms of the pain I'm going to give you this link to look into because I've sent this information now to several of my patients who are in chronic pain for other reasons and it is an interesting concept that may develop into something you could benefit from since you're so young. It's called the Orphaneet/Anesthesia global project.

Also, KFS can be approached surgically in such cases if pain and immobility of the neck or if scoliosis became so painful or obstructive to daily activities that other measures simply don't function. Scoliosis can be corrected if you have that problem and again, you're young so I believe your healing capacity is going to be excellent assuming you don't have any significant comorbid metabolic conditions such as diabetes, hypertension, etc.

I think that with the right therapy program and support groups by your side you stand actually a much better chance at a very good quality of life that may not be completely full of chronic pain as you might think. And just so don't think I'm trying to make things sound better than they are... HA!....check this link out on KFS (perhaps you've already seen it...but read way down where it is PROGNOSIS....and lemme know what you think).

Hope I have answered your query. Let me know if I can assist you further.

Regards,
Dr. Dariush Saghafi, Neurologist

Also, did you know about the: Klippel-Feil Syndrome Freedom group which has a FACEBOOK PAGE and support presence on the web? Check it out. If you need more direction or links to anything or have more questions let me know by sending questions. I have a couple of KFS patients in the practice and they are not doing badly at all.

Lots of options that I think can give you reason to believe that you're going to be doing better right on up through your 97th birthday!

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Suggest treatment for klippel feil syndrome

Hi, Sorry that you ve been diagnosed with KFS, however, you should know that KFS as its own entity rarely causes early death and people can and do lead relatively normal lives albeit with restrictions due to their musculoskeletal abnormalities and sometimes other organ system involvement. In terms of the pain I m going to give you this link to look into because I ve sent this information now to several of my patients who are in chronic pain for other reasons and it is an interesting concept that may develop into something you could benefit from since you re so young. It s called the Orphaneet/Anesthesia global project. Also, KFS can be approached surgically in such cases if pain and immobility of the neck or if scoliosis became so painful or obstructive to daily activities that other measures simply don t function. Scoliosis can be corrected if you have that problem and again, you re young so I believe your healing capacity is going to be excellent assuming you don t have any significant comorbid metabolic conditions such as diabetes, hypertension, etc. I think that with the right therapy program and support groups by your side you stand actually a much better chance at a very good quality of life that may not be completely full of chronic pain as you might think. And just so don t think I m trying to make things sound better than they are... HA!....check this link out on KFS (perhaps you ve already seen it...but read way down where it is PROGNOSIS....and lemme know what you think). Hope I have answered your query. Let me know if I can assist you further. Regards, Dr. Dariush Saghafi, Neurologist Also, did you know about the: Klippel-Feil Syndrome Freedom group which has a FACEBOOK PAGE and support presence on the web? Check it out. If you need more direction or links to anything or have more questions let me know by sending questions. I have a couple of KFS patients in the practice and they are not doing badly at all. Lots of options that I think can give you reason to believe that you re going to be doing better right on up through your 97th birthday!