Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Ehlers-Danlos Round Two

Written by Katie. Posted in Ehlers-Danlos Appointments

I spent much of the day today on the phone with doctors from South Bend, Indiana.  After I returned from seeing Dr. Tinkle, I talked everything over with Larry and we agreed that it would be best to get a second opinion about my neck, prolotherapy, and the overall management of EDS.  Dr. Lavallee is a sports medicine doctor in South Bend who also specializes in EDS.  He is not only an expert in EDS, but he also has it himself.  When I was first researching EDS specialists; three doctors kept coming up as THE EDS doctors to see-Dr. Tinkle, Dr. Lavallee, and a doctor in Maryland. 

Here is more info on Dr. Lavallee:

http://www.ednf.org/index.php?option=com_content&task=view&id=194&Itemid=64

and

http://www.qualityoflife.org/memorialmedicalgroup/physicianBios/Lavallee%20bio.pdf

Since it was already planned that I would be going to Mishawaka, Indiana (close to South Bend) to see a doctor about prolotherapy on January 18th, I decided to try and get in to see Dr. Lavallee on the same day.  Today I spoke to Dr. Lavallee’s nurse at length about my EDS, history, and what I have done for it thus far.  She said she would speak with Dr. Lavallee and they would see what they could do about getting me in on the same day. 

Not even an hour later, my phone rang and it was Dr. Lavallee himself.  I spoke to him for 20 minutes about my history, and what has been going on.  He said he would make me his last patient on the 18th (at 1:00) so he could spend a lot of time with me.  He said he needed me to do a few things before I come:  type up a 1-2 page summary about how I’ve progressed, gather my POTS records, pain management records, Dr. Tinkle records, MRIs and X-Ray reports, and Larry’s records.  He wants me to mail them to him ASAP so he can study up before he sees me. 

Then he asked if he was able to get me in, if I would be willing to see the cardiologist that he sends his EDS/POTS patients to, while I’m there.  I jumped at the chance to see a doctor who specializes in POTS since I feel like this has been the weak piece of the puzzle as far as my understanding of the POTS, and the best ways to treat it…I also was eager to take him up on the offer while I wait until spring to see Dr. Grubb’s nurse practitioner. 

The nurse called me back a little while later and said they were able to get me into the cardiologist that day as well.  Score! January 18th will definitely be a longgggg day, but hopefully a very productive day.  I will see the prolo doctor at 10:30, Dr. Lavallee at 1:00, and the cardiologist at 3:30. 

Now I will pray for no snow storm on the 18th, and that all appointments stay on schedule. 

On to getting my millions of questions together and wondering how I will fit my summary into 2 pages?  I’m thinking bullets will be the way to go.  

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Comments (6)

  • Sara Gooley

    |

    >What is EDS, classical type? I remember you saying there are 6 types, but I remember a number system.

    Reply

  • Katie

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    >Sara-Classical type is the same as type 1. This type includes (often extreme) skin involvement (hyperelastic, fragile, delayed wound healing, abnormal scars, easy brusing, etc) and joint hypermobility.

    Reply

  • Amanda

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    Can you tell me if thr prolotherapy helped you. My daughter is very sick. Looking for help.

    Reply

    • Katie

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      Hi Amanda,

      I can obviously only speak for me, but I have had nothing but success with prolo. Before I started, doctors wanted to fuse me from skull to c3 because of severe instability. That was in 2010. I have been able to dodge that surgery because of prolotherapy (in conjuction with physical therapy) so far. I actually just had my first baby, and am trying to figure out when I can get back for my next treatment. It is super helpful for me. I wish your daughter all the best. I know how hard it can be. Big hugs. ~katie

      Reply

      • Jeannie

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        Could you send me this article you wrote. I want to save and re-read and show to my Daughter
        Thank you so for sharing.
        Feel like we are in a holding pattern but not sure which way to go. Lots if stomach pain to go along with other pain
        -Jeannie

        Reply

        • Katie

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          Hi Jeannie,

          Which article are you interested in? Thanks! Katie

          Reply

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