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05/05/2012 07:36 PM

New to Group. In PAIN. Advice Welcomed!

Katrina11
Posts: 20
New Member

Hello Everyone,

I was diagnosed at age 13. (I'm 31 now) I have fusion at C2-3 and C4-5, cervial ribs, spinal stenosis, scoliosis, thoracic outlet syndrome, and a lot of pain.

My whole life I have always been in some degree of pain. With severe tension-headaches starting at age 7. In my early 20's I took pain medication and muscle relaxers, but they didn't help so I stopped taking medication.

I got the pain under control with many different kinds of massage, yoga, a vegetarian anti-inflamatory diet, energy work, aromatherapy, physical therapy, supplements, meditation, and a positive attitude. I would have pain flare ups occasionally - but more rarely.

I have 2 children, via c-section. I learned after 56 hours of labor with my first that my pelvis wouldn't allow a natural birth. After my second child was born the KFS pain started getting worse, even with my vigilant lifestyle. I finally decided to add some medication. I would take Darvocet and Skelaxin when things got bad. That seemed to help with flare-ups for a while.

Last year I moved from Utah to Boston. I got a new family practice Dr. who gave me Skelaxin and Tramadol. Both do nothing. The only thing I feel from them is brain-fog and a relaxed feeling in my arms.

Lately the pain has been getting unbearable. I have these pain attacks where all the muscles on my right shoulder and neck constrict, so much so that my shoulder blade rises up towards my ear. At the same time this is happening, on the left side of my neck, it feels like I'm being stabbed right between my vertebrae. A few nights ago the pain was so intense I was up all night shaking and vomiting.

I hate being in pain all the time. My kids are 5 and 2 and all too often I have to explain to them that I can't play because I don't feel well. The exhaustion from pain is quickly wearing out my positive attitude.

Does anyone have any pain management advice, know of any Dr.'s in the Boston area, or have any ideas of what I should do next?

Thank you for taking the time to read this!

Best,

Katrina

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05/05/2012 08:15 PM
lisaraman
 
Posts: 795
Member

Dear Katrina- I only have time for a quick hello tonight, but didn't want to end the day without welcoming you to this wonderful group. So glad to have you but so sorry to hear about your suffering. I am not the right person to talk to you about pain because I don't have KFS, but so many others in this group can talk to you about what they go through and how/if they get relief. Besides, this is not a good time for me to sound encouraging because my daughter is also at a low point in her condition because we have not been able to control her pain for several months now. She is only 26 and is currently non-funcitonal. What I do want to talk to you about that I can speak with some experience as a mother and a neurosurgical nurse is your neck tightness. Sounds to me like the KFS is worsened by cervical dystonia. Many people have CD (aka spasmodic torticollis or wry neck). It is more common than not in KFS. Because the neck is bing pulled to the shoulder or vice versa, it would be good for you to see a movement disorders specialist to see if you would be a candidate for Botulinum toxin injections in your neck. If that is a treatment option for you, it may help to relax your neck and shoulder muscles; and thereby improve the pain. Your lifestyle behaviors are commendable, but unfortunately, KFS is a progressive condition (we throw eggs at doctors who argue that point) , and in more cases than not, requires complex medical management. I do hope that you find something that helps-each person's condition is unique, but one commonality is the presence of pain and a premature degenerative spine. In some cases, surgery may be an option to remove bony spurs and reduce pressure on the spinal cord. The neuro spine doctor at Mass General (can't remember his name but there is a girl in this group who had surgery with him) is wonderful and seems to have a good working understanding of KFS. If I can find his name, I will be sure to share it with you. Once again, glad to have you with us and I do wish the best for you. Lisa

05/05/2012 08:43 PM
Katrina11
Posts: 20
New Member

Thank you Lisa!!! I've been reading about CD, and agree, I think that's what is going on. I just found a movement disorders specialist and I'm going to call her first thing on Monday.

All the best to your daughter.


05/05/2012 08:58 PM
lisaraman
 
Posts: 795
Member

Katrina- so glad to hear you were already thinking CD. good luck! I do hope you get the help you need. I recommend Dr. Nutan Sharma in the group at Mass General. she is the department head in the movement disorders clinic. She is involved in some very interesting research in cervical dystonia too which uses a hard bracing technique which my daughter is going to be part of soon. So we may see you there! She works closely with an acquaintance of mine named , Anne Blood. Anne is a CD researcher at Harvard and is internationally famous in her work in the area. Good luck and please let me know how it goes. Best, Lisa

Post edited by: lisaraman, at: 05/05/2012 08:59 PM


05/07/2012 11:08 AM
Katrina11
Posts: 20
New Member

Lisa,

Thanks for all of you insight and help. I have never talked to anyone who knew anything about KFS let alone had the wealth of information you share on this forum. All of us here are lucky to have you! I am so grateful to have found a group of others who deal with the same difficulties. Thank you so much for your time and expertise.

Blessings,

Katrina


05/13/2012 07:50 PM
Rosie88
Rosie88Posts: 708
Member
I'm an Advocate

Hi Katrina,

Sorry I was missing in action but WELCOME! I would say CD as well just with how you described what is happening with your neck, and I only know about CD because of Lisa and her lovely daughter. I just responded to your request for information on Dr's in boston, I must be reading posts backwards. Woops! Anyway, welcome to the group. I am sure you have been searching for a Dr in Boston. I don't know of one but keep searching on google and asking around in your area for a good general Dr... and that Dr can help build your team. For me, I just keep looking for Dr's online in my area. Finding a Dr who knows about KFS and CD is not an easy task as you know. Nice to meet you and feel free to ask anything here and share, vent, etc!

Best,

Rosie


05/13/2012 08:12 PM
lisaraman
 
Posts: 795
Member

Katrina - Dr. Nutan Sharma at Mass General movement disorders cinic is a fabulous doc who is an expert in cervical dystonia -and is a key researcher in dystonia research including serial bracing trials. My daughter will be joining the study soon. If you get a chance to contact her for your pain and dystonia, you will be well cared for. BTW- she is a very nice person too Smile
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