Complications Of Eds---more Pots Symptoms

[Maxine]

This week on Wednesday I went to my EDS specialist from Cincinnati Children's Hospital.

HE was very understanding, and answered a lot of questions. I saw the EDS genetic counselor first, then him.

I have been there twice before this appt.

She explained that there is still a lot of ignorance out there. Some Docs insist this is all manifested in our minds despite psysiological and structural problems that can leave us feeling so limited. They could watch us hobble into the examining room because we are in so much pain, but still won't believe it's real. ICK-----kind of makes you wanna puke......

We discussed the finding from the NIH EDS study, and thankfully he said the missing vertebral artery, and the fetal origin of the left posterior cerebral arteries shouldn't be a problem because the other arteries make up for them. However, my right vertebral artery is enlarged and pressing on my brain stem, and combined with the small posterior fossa---(aka-lower skull), and retroflexed odontoid bone with defacement of the subarachnoid space---( aka---CCI----cervical/cranial instability) it's not a good combination. The Doctor from the NIH study said my thoracic spine has more desiccation, and basically the whole spine is a wreck. The EDS Doc and I focused more on the CCI.

I have a local neurologist who doesn't think the CCI has anything to do with my symptoms of fatigue, slurred speech, pain in lower head and neck---spreading into the majority of my spine, difficulty with walking gate, balance issues, trouble swallowing, numbness, tingling, and now urine rentention. She thought my POTS was the cause of all this. NO, the POTs is caused by the EDS and CCI.

My EDS specialist said I need to see a neurosurgeon. I have an orthopedic surgeon who is watching things, and he is also from CCH, but he thought I needed to see someone specifically trained with neurological deficit. This is not necessarily because I need surgery, but to have somone who can watch things more closely, as there are days when my symptoms are more subtle. I'm guessing he wants someone that can pick up on the more subtle symptoms.

The trip was rough, and I had to wear my hard cervical collar to keep the pain tolerable. It's only a 3 1/2 hour drive, but the roads kill my neck, and aggrivate the CCI.

We discussed my GI problems---( excessive diverticuli covering 3/4 of large bowel, and large 5 cm one in duodeum/small bowel). He also agrees with the NIH doc that the EDS causes the bowel wall to be weaker, and can cause this----but both agree some kind of inflammatory process is going on too. They said I should have colonoscopy to get a biopsy. I had the lower GI barium enema due to the colon cancer in the family, but need to have a biopsy.

Headaches have been worse, especially when I move my head, or try to bend-----(which I know I should not do---but do it-- )---just moving my arms or shoulders will affect this too. the sharp shooting pains scare me. Basically the whole dang thing is wearing me out. It's depressing because upper body strength is zilch, and I'm only able to hold my new granddaughter for limited times, and really struggle. I pick her up, and I pay for it, but can't resist---------she's such a doll.

Monday I get my root canal---------this is their hope at the University of Mich. Otherwise an extraction-------scary with the CCI. Also scared about the local anesthetic. I had a horrible reaction to this in 2005 when loop recorder was put in---(still haven't had this removed due to the fear of the local. EDS doc said the oral surgeon, and anyone else using local anesthetics has to have good knowledge of EDS. I know the doc at NIH was worried about this.

I wish things would improve.

Maxine :0)

[masumeh]

Maxine, I have to give you kudos for understanding all the complex interactions going on between various disorders in your body. It's no small feat. I'm glad also that you found a team of doctors who can really grasp these issues as well.

Sometimes, I guess, things don't just go away as we would wish them to....the best we can do is cope, which you are doing great it seems.

I didn't know that EDS could cause POTS. My cardio recently told me that my hypermobile joints are related to my Mitral Valve Prolapse...which sounded suspiciously like EDS to me, though I've never been diagnosed with it. I'm scheduled to see a rheumotologist when I get back home (to Saudia). Is that the right field to diagnose the EDS, if I have it? My ortho for my knees recommended me to the rheumo for my wrist, ankle, spine, and shoulder problems.

Hang in there! And I hope your root canal goes smoothly and has a speedy recovery.

[mkoven]

EDS affects many areas of the body, as collagen is everywhere. A geneticist may be the best placed, but not all have equal experience. I did not have a good experience with a rheumatologist. I didn't look like as extreme as his med school text book, so he told me I was normal. It was actually someone on physical medicine and another doc in sports medicine who first suggested it, after my umpteenth joint injury. the Phys. med person looked at my hyperflexible elbows and suggested it--that along with all the injuries I'd sustained in a short period of time.

So the key is to see someone experienced with subtle findings--from your joints, to your skin, to the smushiness of your nose and ears, to the whites of your eyes, etc. Are you in the US now? If you go to www.ednf.org, you'll find a listing of eds knowledgeable docs.

[Maxine]

Thank you for your responses and support------------

Masumeh, I know having EDS can cause OI from the poor vascular tone, but I also think, and so does my ANS doc, that CCI can have a connection also.

Today I saw the oral surgeon, and was supposed to have root canal done, but she did not feel comfortable doing it until she consulted another oral surgeon. She said the tooth is necrotic, and even having the root canal done could only save the roots----(basically avoid pulling the tooth). My EDS doctor called her and explained my reactions to local anesthetics, the cervical/cranial instability, and the ANS problems. She is referring me to another oral surgeon in the same pracitce, and I will see him next Wednesday. I told them I hope they didn't think I was being too anxious, and they said NO, especially after talking to my EDS doc.

It's hard to wrap my head around all this.

I think A Geneticist experienced with EDS is a good Doctor to start with, but I'm not sure how a rheumatologist would be with this. I know some see rheumatologists for this, but I think it's the wrong doc to see.

My cervical/cranial area is subluxating several times a day, and now there's some catching----like a stuck hinge---

I have worn my hard cervical collar, and it's helped with some of my symptoms. However, I can't wear it a lot because it will cause poor muscular tone, and then there will be nothing to hold my head up. My joints and ligaments are too loose.

Take Care,

Maxine :0)

[MightyMouse]

Hi Maxine,

Even if things can't physiologically improve for you, I hope you find some relief from the stuff you've got going on.

Nina

[ajw4790]

Maxine,

Hi! I am glad it sounds like you finally had a dr. that was able to give you some answers, and listened! That is good that she said the blood vessel differences should not be of concern. I wish that the odontoid bone and spine issues were along the same lines. It sounds like you have way too much going on, especially for it to be at the same time! Goodness!

I wish for your sake that you had been able to get the root canal taken care of, because it would be one less thing, and probably less of a nuisance/painful. But, I am really glad that the drs. you saw listened and sounded like they were being cautious etc. Rather than just diving right in.

I hope that you find some relief soon for some of everything going on!

[Maxine]

Thanks MM and ajw4055----

My EDS doc e-mailed me and said he sent a referral to a neurosurgeon. He contacted the chief of neurosurgery, but I don't know where----------------(it's either University of Mich. Hospital, or it's Cincinnati Children's).

Hoping to get some kind of relief of my symptoms, AND hoping it can be done conservatively. I'm really upset that my oral surgery is delayed once again. Still have to contend with the gut issues, two docs said I should get a biopsy due to excessive diverticuli in large bowel-----only sparing descending colon---or ascending--(can't remember), and the big one in small bowel.

It's so hard because I have my new granddaughter who is getting bigger by the day---now around 15 pounds, and it's very difficult for me to hold her, or pick her up. 15 pounds is my limit. Every time I pick her up, I pay for it. My other step granddaughter is 4, and has learned to climb very well because I was not able to pick her up. She was 9 months old when my son met his fiance. She has been jumping to sit on my lap, and climbing in and out of her car seat since she was 18 months old. I miss not being able to pick up those girls---

I just feel broken-----------both in body, and in spirit.

Maxine :0)

[Megan]

Hang in there, Maxine. You're in my thoughts and prayers!

Meg

[Rachel]

Hi Maxine,

Thanks for sharing about your appointment. I'm glad you were able to see such an understanding doctor. Was the doctor able to recommend a good neruosurgeon for you, or do you have to find a good one on your own?

I hope that your root canal goes well next week. I'll be thinking about you. Do let us know how things go.

Hang in there (but you're already doing that!). I wish you could have some relief from your symptoms.

Hugs,

Rachel

[Maxine]

Thanks Rachel and MEG---

The appt. is at The University of Mich. Hospital. My gut feeling-------------I don't think it will go anywhere. I saw a doctor there back in 2005 that did not feel any of my MRI's had any worrisome findings-----and he didn't feel my symptoms were anything of concern either. He was older, and has since passed away. However, other very reputable doctors have diagnosed the problems below in my signature line----both before, and after my appt. with the NSG at the U of M in 2005.

Next week on Wednesday I see another oral surgeon from the same practice, also from the U of M. He will be looking at the tooth---which happens to have very long roots---- The root canal they were going to do was only going to save the roots, the tooth is necrotic/dead, and can not be crowned----------soooooo, what's the point. the tooth was crowned, and is part of a bridge from the tooth I lost in Dec. 2000---(this is when I crashed with my pots) The oral surgeon I saw last week did say that my continuous dry mouth has contributed to the problems with tooth decay below the gum line. I have no bleeding, and my oral hygene in excellant. I floss, use special tooth brushes ect. She said my dry mouth is a factor, and my EDs doc said the EDs plays a role in my dental issues as well.

My CCI----cervical/cranial instability is of concern with a tooth extraction. The first oral surgeon I saw at U of M thought using a general anesthesia would be dangerous due to the CCI, then on another appointment two other oral surgeons felt they could save the tooth with a root canal. The first oral surgeon was not concerned about local anesthetics. I had a terrible reaction to lidocaine in 2005 when loop recorder was put in. The oral surgeon I saw locally sent me to an allergist to see why I have problems with locals. He was afraid to do the testing because I'm on beta blockers. The drugs used to treat an allergic reaction aren't as effective if someone is on beta blockers.

I told him I thought my reaction was more of a "toxic" reaction. No hives, or breathing issues----------I felt whole body numbness, tremors, disoriented, nausea, severe anxiety, and tachycardia. But still no testing. He was so nice though, I didn't mind---------LOL--- He was open minded about learning all about POTS and EDS, so I enjoyed the opportunity to tell all---

I have never seen so much trouple over a tooth, BUT it is only a couple inches from where my instability is. I think they want to be careful, and I appreciate that. However, I'm at the point of saying, just use local anesthetic, pull the thing, and see what happens. I'll be awake, and can guide them with my neck, so the CCI isn't aggravated further. The tooth hurts deep in the roots now, and it didn't before my appointment last week. The oral surgeon kept poking below the gum line to ask if I could feel something. I could not-----the tooth is dead, but the roots are not---- This all started a month after my mom died, in March of 2007. First the insurance dragged their feet, then the local oral surgeon sent me to an allergist, then he passed me on to the U of M.

Maxine :0)