Looking for any information/ seeking Dr. In Georgia

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Looking for any information/ seeking Dr. In Georgia

Postby equestrian » Sun Jun 10, 2007 10:50 pm

Below is my profile and story. I would be so greatfull for any suggestions, and to make some new friends!! Thank you and God bless you all!! -Lisa :)
Atlanta, Ga. (Jefferson, Ga)
40 yr. old Female
Syrinx from c5-t2 possible borderline Chiari
0 surgeries
I broke my neck at c6 in 2002 in a horse competition (my head was run into a tree at speed (when the horse did not turn) on an Olympic trials cross country course). The break and the Syrinx were not diagnosed for over a year. When I got intermittent numbness and pain in my neck, arms, and hands I got an MRI. The pictures had a lot of motion due to my swallowing. The Syrinx then was at c6, maybe a little more but too much motion on films made it hard to know for sure. Now, 2007 my symptoms are not too much worse, some are better, but I have an intermittent Icy Hot "shawl" type feeling. I am still very strong, and though I have a fair amount of pain in the neck and hands I also have a lot of arthritis in my neck and Carpel Tunnel. I have a high pain threshold as I have had to deal with it being an Olympic level Equestrian. I have given up riding for now under doctors orders as well as I do not want to become paralyzed and burden others. So far only one Dr. has said anything about a Chiari. He says I should get a more intense? MRI with and without contrast of my whole spine. I do not really know where to start to find an experienced Dr. My dad says I should go to Johns Hopkins in Md. where he lives, but I don't believe my insurance would consider that part of my PPO network. From all my research this needs to be monitored, and possible surgery done by someone who REALLY knows about it first hand.
equestrian
 
Posts: 16
Joined: Mon May 28, 2007 8:03 am

Postby mac » Sun Jun 10, 2007 11:07 pm

Hi, Lisa and welcome to the board! Thank you for joining us and I hope you will stick around a long time.

I can relate to your story because I broke my C1 in four places when a horse I was training stopped in front of a jump and I went over his head...you know the drill (pardon the pun!)...what we used to do (jumping) is a very dangerous sport, for sure. I never was at the level you are in terms of eventing, but am a lifelong horsewoman/cowgirl (I'm 55).

I have also stopped riding. I was injured on the job, so my care/etc is all work comp. I was allowed back to work 7 months post injury, and told to never jump again, so I trained dressage. Worst thing I could have done, as you can imagine. Unlike you, I was diagnosed with the fractures right away. But they did not recognize that all of my ligaments broke too and I had an unstable fracture. Thus, I should have had traction and then a halo, and all I was given was a small, flexible collar. When Dr. Bolognese saw me and I asked about riding, he said it would be "suicidal." If you fall off, you die, he said. I never put a foot in a stirrup again after that. For the same exact reasons you mentioned.

You are 100% right in your assumption that you should go to the best expert you can go to. Although John Hopkins is an incredible facility, I do not believe they have the best experts there in syringomyelia (SM ) and Chiari (CM). Since you are in the south, perhaps you should try going to Dr. Barth Green in Miami. You can't do any better than Dr. Green for what you have going on! We have one of his patients here as an active member, and she will chime in soon.

Most of us with these rare situations/conditions need to travel to get the best care and as you already have figured out, if they are treating your spine and/or brain, you want nothing but the best. Even if Dr. Green were out of network for your insurance, I would still recommend your going to him, and paying what is necessary, if possible.

The other option is The Chiari Institute in Great Neck, NY. They are the best at what they do, too. You can visit their website at www.thechiariinstitute.com. There are a lot of great videos on there you can watch.

I was in CA when I was injured and all the doctors could not figure out what was wrong with me, because they all believed I'd had a stable frax and it had healed fine. I went on my own to Dr. Bolognese at TCI and he easily found the obvious on my CT scans: my C1 never fused itself and I still have a very large gap/displacement in the ends of the bones. You will read many wonderful stories about Dr. B and I believe them all.

I have also heard wonderful things about Dr. Green and recommend him for you without hesitation. Give him a call and at least get a consult appt with him to find out what is going on with you!

I hope this is the beginning of a long and meaningful friendship!

mac
mac
 

Postby equestrian » Sun Jun 10, 2007 11:39 pm

Thank you so much Mac! I will definately look into Dr. Green, though for now cost and time off of work will play a part in how soon I can see him. I too wanted to do dressage ( and I am trained through Grand Prix) since I can no longer jump. I am working on selling 3 of my 5 horses right now and leasing one or two , as well as doing some line driving (at the walk) and lunging. I did sit on one of my horses today to get a few photos for the sales ad. I will be so happy if I can just trail ride even if it is only walking. My husband and I discovered camping with the horses last year. It was so awesome. I suppose I am ok with my competition days being over, but I pray the Lord allows me to ride again. I am scared and sad, but I am trying to make lemonade out of lemons. I believe in the power of prayer and I am trusting in the Lord for his healing, but I know no matter what happens He has a great purpose in all of this. I hope I can be of help to others who suffer and are scared, and to spouses and family members who are scared and do not understand. My husband is scared, but says he is with me all the way. We just got married last year. Poor Guy!! He had cancer before I met him so he knows what fear is. It sounds like if your symptoms are not too bad and the Syrinx is thin 2mm at the thickest that surgery at this point may not be the way to go. I do not have disability insurance yet, so that scares me, though I am looking into it tomorrow. How long it the recovery time after surgery for a shunt? Thanks so much for all your kindness!!!!!
God bless!
Lisa
equestrian
 
Posts: 16
Joined: Mon May 28, 2007 8:03 am

drs

Postby razzle51 » Mon Jun 11, 2007 4:49 am

there are a couple of Drs . referred from other patients:

Dr. Sam Banner
Nathaneal Medical Center
Dothan, Alabama
334-702-8872

AND Dr. Gerald N. Kadis 704 S Broad Street
Thomasville, GA 31792 (912)226-8880
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

User avatar
razzle51
 
Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

Postby mac » Mon Jun 11, 2007 8:48 am

Lisa, it sounds like we have our faith in common as well. The Lord will be by your side, like He is with us all, as you travel this path given to you. It's a rough one, but I have found that since I have Him in my life, it changes everything.

I sold my horse 2 months ago, left him on the ranch when we moved from CA. I had him 12 yrs. Yes, it was very hard, but God did a miracle in my heart. After 45 years of continual involvement with horses, I was able to miraculously walk away from it, and I was okay.

I "thought" I'd be able to ride a good trail horse at a walk and okay, I'd be happy. But it turned out that with what I'm dealing with, it is simply too dangerous. And I like what you wrote about honoring your family by not competing. That was what came to my mind: would I, for selfish reasons, put my family through the grief of my death or the heartbreak of my paralysis? Of course not.

I hope you will stick around this board b/c I think it will help you to learn more and more how to cope with your situation, and also you will see how important it is to get to that true, fulltime specialist in CM/SM.

I'm going to send you a PM, so look for it. I'd like to send something to you.

Re your shunt question...well, this is where that specialist comes in! If you do have CM, then that needs to be addressed possibly, and might have a positive effect on the SM you have. Only a true specialist will understand all of this. But I understand you are just trying to fill in some blanks here and expressing the concerns you have. What we have seen here is that for the most part, doctors today are trying to avoid shunts in SM. It is so invasive and they seem to fail so often, or are pulled out by movement. So, you may not be really looking at shunt placement...however, in the case of post traumatic SM, we have seen people who have shunts post on this board and some have done well, some not so well.

When you consider a doctor, you want to ask how many patients he/she has had with CM/SM. If only, for example, six a year, well, this is just not enough. It truly will be worth your time to travel to the expert and not settle for less.

Also, Lisa, lifestyle changes can help you a lot. I can't address the SM issues as I do not have this...but some of your situation is something like mine, including the borderline CM. One thing many of us have found helps is wearing a soft cervical collar. You can get one at most medical supply stores without a rx.

The fit is very important, and you should have someone help you with the fitting if possible. Your head/chin should be held level, not allowing your chin to go down, yet not pushing your chin up and thus hyperextending your neck. You can trim one down if you have to buy a taller size, rather than buying a too short size. Just cut carefully into the "sock" that covers the collar, trim a little bit at first down (foam) with scissors, don't take too much, just trim as needed, try it out, if you need more, do so...when done, stitch the sock back up.

This is a good thing to wear when you are doin physical activities like house cleaning, even walking, etc...

Avoid the positions that hyper flex or hyper extend your neck (we don't want you behind the bit!) Don't paint ceilings, for example.

Also, as you go along, be aware of what you are doing, and what causes your symptoms to increase. Then, obviously, avoid them or modify how you are doing them. With myself and many others, we notice that we may do an activity and feel fine, but 2 days later, the flare up in symptoms will come on with a vengeance.

You can manage your situation a lot with lifestyle changes.

this is a lot, I apologize for the long post. Just want to help you a little with some of the things I've learned. Have a great day! And God bless you.
mac
mac
 

Postby equestrian » Mon Jun 11, 2007 6:22 pm

Thank you all so much for your help!! I tried to contact my X brother inlaw in Thomasville who is a Dr. He was so kind and called me back! Not only did he call me back he treated me like I was still part of the family. Which is a wonder because I left my husband, so he had no responsibility to call me back, but God is good, He heals all wounds and He DOES provide. He (my x brother inlaw) knows Dr. Kadis and speaks very highly of him. He is going to go see him tomorrow and get my information to him. I am going to e-mail him all I can tonight and then fedx him the cds of my MRI which he will take to him. I pray he can help me. He is very connected in the medical world and very kind. He says if he is not the one to see they will get me to the right one. Keep me in your prayers that I will continue to really see God's hand moving in a mighty way. God bless you all and I pray for your healing and for good and pain free days.
Lots of love and thanks,
Lisa
equestrian
 
Posts: 16
Joined: Mon May 28, 2007 8:03 am

Postby mac » Mon Jun 11, 2007 9:47 pm

Lisa!! What a blessing to read your post! Wow, God is working in a mighty way in your life!! This is thrilling and I'm so glad to hear of it. Pls be sure to keep us posted up to the minute :P about what goes on, okay? I think your ex-bil is one wonderful guy!!

I'll be emailing you soon!

hugs
mac
mac
 


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 13 guests

cron