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Positive Experience With Eds Specialist Yesterday


Maxine
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My husband and I went to Cincinnati Children's Hospital yesterday for a consult with the EDS Doctor (Dr. Tinkle) who is taking over for Dr. Wenstrup. First I talked with the genetic counselors for about 45 minutes, then Dr. Tinkle came into the room.

I'm so glad the appointment went well----just as my last appointment went when I was there in October. In truth I have not had any real hope in my condition improving, as my care locally has not been very good, and some doctors (not all) have been dismissive on how seriously ill I have felt. There is more involved with EDS then I thought, but I think I said this when I posted about it before :rolleyes: . I think those of you with EDS are well aware of how disabling this can be, especially if it's combined with other health problems. I'm not a person who sits around and lets an illness take over. I have tried hard to keep active, but there are times when I think I can do things in my mind, but my body won't let it happen. It's so hard, because when you are limited physically, you just can't WILL your body to work. When I do push myself too hard-----I crash hard, and it's usually very sudden. When I told the EDS Doctor and his staff about this they understood, and they know there is still ignorance in the medical community on EDS as well.

My husband asked him if he gets treated like he is nuts also -----and he said he is taken seriously when he discusses EDS. However, this is not how patients get treated. He said the ignorance just isn't local, it's all over. It has been a daunting experience to have three different illness that have little understanding about them in the medical community. This EDS geneticist is a little different then the last one I saw in that he continues with a treatment plan to help us be more functional. In other words, maybe I can actually enjoy time with my family without needing to lay down as often, or actually enjoy dinner out with my husband. We always ask for a booth so I can lean back on something, because I have such a difficult time supporting the weight of my upper body and head. He is going to send me to an orthopedist specialist who deals with spine issues, and then in the same day have me see a physical therapist to help me with a program to help tone my body in a way that won't further aggravate my upper spine instability. Then the PT in Cincinnati can hopfully help me find a lcoal PT to work the same program.

The best part is that he understands my cardiac limitations-------he knows what blood pooling can do, virtually making it impossible to do anything aerobic. It's not an issue of being deconditioned, it's an issue of blood flow.

We discussed my fears of using lidocaine, and he said people with EDS can have issues with it not working to numb the area properly, and as it is in my case it can be absorbed systematically allowing an adverse reaction affecting cardiac function, as well as adversely affecting the CNS. I was really impressed with his knowledge in this, and I also felt validated that I'm not nuts-----this reaction I had on past dental procedures, and when the cardiac loop recorder was implanted was real, and it could have been dangerous. Physicians and dentists need to understand what can happen to a patient who has EDS and cardiac issues with POTS when lidocaine is used in different procedures. I'm talking about lidocaine without EPI------this is a lidocaine issue, not and EPI issue. He said it's part of the cocaine family, and if it's absorbed into the vascular system, it can give an adverse reaction.

We discussed how I'm dealing with all of this emotionally, and I told him I was pretty much a train wreck in that area, because I had other things going on as well with my family. It seems as if Cancer is everywhere, my mother who just died of terminal cancer (we don't know where hers started), my brother with colon cancer, my mother's brother--colon cancer, my mother's sister died of brain cancer in 2003, and my Dad's brother who died of non-hodgkins, and finally an Aunt (mom's other sister) who has a brain tumor. I told him I had a awful experience with a nurse, and since then have had a lot of anxiety of medical professionals as a whole. I told him I was in the care of a good therapist who is helping me with all of this, and then we discussed bio feedback. I told him I need to calm my mind before I can do that. (this part I didn't discuss) I'm still contending with a lot of anger issues with both the medical community on my mother's behalf and my own.

But all in all there was a glimmer of hope in that I can actually have this EDS treated with some serious thought behind it. He shows concern for the cervical/cranial instability and the small posterior fossa/brain stem compression from this, the prominent vertebral artery, and the retroflexed odontoid bone. He said surgery would be helpful, but seemed to understand my reluctance in having it done. This will need to be discussed further, because as I feel more and more symptoms arise related to brain stem compression------------------surgery may be my only choice to relieve this. It depends on how bad it gets.

I'm still very depressed, and have times where I feel paralized with this, and I want to withdraw to never never land, but there is life, and I have to live it. My Dad is in a very fragile state, and I know he needs support. All my brothers are working outside of my brother who is under chemo because his cancer has spread to lymphnodes and liver. I want to be there for them whenever my body allows it. Even on bad days I can at least keep my Dad company.

Still hanging on------------thanks to EDS Doctor, and his understanding.

Maxine :0)

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Maxine,

I'm glad your appointment with Dr. Tinkle went so well. It's so huge to have a doctor who doesn't make you feel like you are crazy! I'm glad you feel a bit of hope.

I'm sorry you've had so so much heartache in your family. I can see why all of this is really hard to deal with.

Hang in there! :rolleyes:

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MAXINE~~~ i was thinking of you yesterday and today wondering how things went.. Im so glad that it went well..just wanted you to know im rooting for you!!

glad dr. tinkle took you seriously that is so imnportant when dealing with all this stuff...

talk soon

love dizz :rolleyes:

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