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Back From Eds Study At Nih


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My husband and I drove down to NIA at Harbor Hospital in Maryland Sunday, and we went to The NIH study Monday evening. I met with Leslie, and we did a lot of paper work, and I got the halter monitor put on. A lot of testing, and I had a lot of blood work.


EDS changed from type III/hyper mobile type to Classical type II.

Multiple disk desiccations on thoracic spine

cervical/cranail instability

retroflex odontoid

disk problems in lumbar 4/5 spine/anular tear on L5/S1

She suspects inflammatory bowel disease


missing left vertebral artery

POTS/orthostatic tachycardia

(not all the tests results are back/and some of them were older films from a few months ago)----and the new ones showed more damage to thoracic spine----maybe due to the scoliosis........)

Most of this is what the tests results show, and what she suspects upon examination. Some of this was already diagnosed previous to the EDS study, and is listed under the test and lab results as well.

Dr. McDonnell and the whole staff---(including Leslie) were very nice, and exceptionally professional. I have never seen a group of medical professionals with their act together more then this group. I'm so glad Dr. McDonnell could put up with my husband's weird sense of humor--LOL.

I was exhausted, and overstimulated at the same time if that makes any sense.

I'm a little confused about the classical type EDS/type II, as I have always thought I was hypermobile type, and diagnosed with is previously. I know you can be hyper mobile with type II, but less dislocations. I have only dislocated with my shoulder blades. I have a lot of subluxations all over, and very hyper mobile. My brighton score was 5.

I was told previously that my spine instability/cervical/cranial instability is caused by my EDS.

Obstructive sleep Apnea can be caused by both the EDS and structural problems..........

I also have multiple diverticuli in large intestine covering almost the entire intestinal wall, and one giant diverticulum covering both the 3 and 4th portion of my duodeum/small intestine. I thought she said the EDS can cause this as well, but she also highly suspects inflammatory bowel disease or chrones----------based on finger clubbing, GI films, and symptoms. However, I don't have diarrhea---and I thought you had to have this...... constipation has always been a problem.

I didn't feel well enough to look at any of the sites like Washington DC----ect. We did visit a big outlet mall not far from the hotel before we went to NIH.

I learned a lot at the EDS study, and the staff was so kind, and very understanding.

Take Care,

Maxine :0)

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Maxine, I don't really understand EDS at all. So, no clue how the change in type matters, or what a difference it makes in outcomes, etc. Sorry. I bring up my PP here sometimes and know others don't get it at all, and that's how I am with EDS.

AS far as all the gut problems, you do NOT have to have diarrhea when you have crohn's. Or colitis. A lot depends on which part of the gut is involved. Mine is distal, or lower in the gut, so I don't have a lot of diarrhea, till lately anyway. It's a misconception that all people with inflammatory bowel disease must have copius diarrhea. The treatments for both are pretty much the same until it gets really severe. Remicade is used quite a bit now, but typically as a last resort before surgery. The oral meds for IBD are pretty benign, as far as side effects go, until you get into steroids and things.

I've seen them remove diverticulum from people, but know you are a risky surgery. I guess it depends on which is riskier for you. Having them take over your entire gut, or taking some portions out.

I'm glad the study went well and you did okay. It sounds like it was a very positive experience. Sometimes I think that even if I didn't learn anything, it would just be nice to be treated with compassion! morgan

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MAXINE~~~~im so very glad that things went well at NIH... and im super glad that you where taken seriously.. sounds like your getting answers.. I really hope that answer and an awesome medical team will lead to you feeling beter.. or atleast getting a treatment plan that can improve your quality of life.. so that you can fully enjoy those grand babies girls!



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Thanks so much!

It was rough, but I seemed to glide through the testing ect. This is a research study, and there isn't any real follow up until it's my turn again----(total of three visits---I think)----every three to five years. However, Dr. McDonnell wrote her clinical notes from our visit, and what her assessment was of some of the test results, (not all of them are in yet). The notes, and other test results will go to the appropriate doctors, and her e-mail is on there should they wish to contact her. She also wrote up a treatment plan to give to my docs as well--- :)

She is very concerned about the tooth extraction because of my cervical/cranial instability----and wishes I had other options. My oral surgeon will contact her I'm sure.

I asked about the desiccated disc on t-8/t9, and she said all of my thoracic spine shows desiccation, then she said I have retroflex odontoid with pannus growth/cervical/cranial instability--------and the rest of my spine problems. I was shocked my spine came out so bad. I knew it wasn't good, but I didn't expect this------------------especially the scoliosis. I think the doctors in NY--(the chiari institute) mentioned the scoliosis once, but I don't think it was put into the clinical notes.

The other thing that shocked me was the missing vertebral artery on the left. She wondered why Docs where I live did not bring this to my attention, as this can cause very serious problems if I were to have a stroke. Even though it was seen as hypo plasic by radiologists on many MRIs, it was still never brought up to me by local docs. Only Dr. Heffez who did my cervical spine surgery mentioned prominant right vertebral artery pressing on brain stem---(probably making up for the lacking left vertebral artery. I'm not sure what to think about the narrowed cerebral arteries. I showed -0- plaque on chest CT, but I'm not sure about brain?? I think the arteries are just congenitally narrow, just as my posterior fossa is, cervical spine, and now the missing artery.

The gut problems now have a known cause--------I have had problems for years, but grew so used to them being dismissed, and lived with the discomfort and sometimes PAIN, that it was just a way of life for me.

No wonder I'm having so much trouble just walking one wing of the mall, and I feel so weak and fatigued. I'm a walking train wreck. However, I'm glad I can still walk------------I'll take it! So many with this stuff have surgeries, and get worse. I won't have surgery unless I can't get out of bed. Until then I'll shuffle around the best I can, and hope my EDS doesn't cause me to come too terribly unglued. As it sit here typing this I have to keep switching legs because as I cross them each knee wants to subluxate---- :) I guess the thing to do it not cross them---- ;)

The pain is getting to the point of putting me in a pretty depressed state, as I don't tolerate pain meds well, and have not used them since the birth of my son when my pelvic bones/tail bone were all wacked out. I was not a pretty picture on those percodan.

Maxine :0)

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  • 3 weeks later...


Sorry it took me a while to respond to your post. I wanted to say I am glad it seems like it was a worthwhile trip, and sounds like you got a lot of useful information. I wish that some of it could have been better, but I guess it must help to solidify some of why you feel the way you do. And now you have some proof to show drs. that you are not making things up and hopefully it will lead to some help with at least some of everything you are going through. I hope this helps you and you can see some relief!

Keep us updated!

I hope you are feeling a bit better!

Also, how is your grandbaby doing?

Hope all is well! :blink:

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Thank you Ajw4055--- :blink:

My granddaughter is doing well. She is 3 months old, and she still has to be on a monitor. She doesn't have those horrible coughing spells like she had with the pertussis. She also had two colds following the pertussis, so it left her airways inflammed. She will probably have to be monitored for while, as she has had apnea episodes. They are short episodes, and she recovers on her own, and they are probably attributed to her irritated airways. She is starting to be amused by her toys, and is a very smart little baby girl. She smiles a lot more, and is strong otherwise. She's pretty normal outside of the complications from getting pertussis at two weeks old.

I have a lot of followup to do with different doctors on my test results. Tomorrow I see my local neurologist, but to be truthful, I don't think she realizes the seriousness of my problems. The Doc at NIH thought my neurological problems from my spine compression, instability, brain lesions, and weird artery issues in my brain are the base for my disabling symptoms. I need to call my gastroenterologist about her suspicions on the imflammatory bowel disease. She also said the EDS certainly affects my bowels as well.

I'm thinking the EDS in the only cause for my bowel problems, but she in sure something else is going on. She's a very good doctor. so I think I better get this checked out. Anyway, my side hurts more now----------kind of like a little baby fist is shoved up into my right side----(right square in the middle). I also get full very easily when I eat------------miserably full, almost to the point I don't want to bother with eating. I don't have any vomiting, nor do I have diarrhea. But I have bloating, constipation, GAS, and dull pain. The pain feels like a pulling kind of pain.

I've had gut problems for years, so this is just something I wish would just GO AWAY. I have enough going on besides that--- :blink:

Take Care,

Maxine :0)

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