Hi everyone!! My name's Emily and I have quite a few things going on. Chiari, EDS, POTS, TC and was dx/ para (lumbar) on 12/28/07.

I was just wondering how u handled your diagnosis? Did your relationships (romanticaly and family) change after the dx?

One of my spine conditions is Tethered cord (occult) doesn't show on MRI. I've been in my scooter for two years. Couldn't lift my feet off of the floor and now can't even do that.

I used to sing pro, b4 I got sick, can't do much now due to high ICP, seizures and POTS.(heart condition)

Any advise on things to do to occupy my time? I'm 35, and want to Lobby Congress at some point for the disabled and hopefully will be able to write for some disabled mags soon...

Sorry for the rant, too much to say and my aid wants to go to sleep, so I have to get off my computer.
Take care and God bless all of you!!

Looking forwarad to any/all advise!! Em

Hey go for it and welcome...............

Hello Emily C,

I also have EDS ( mixed diagnosis most types), POTS ( a feature of some types of EDS which features are Autonomic dysfunction) and I am paralysed ( a little higher than originally diagnosed and shown here)

If you wish to read my story, please go to the stories thread here, my post can be found by following this link: http://www.apparelyzed.com/forums/index.ph...ost&p=43861


I was a practising RN prior to the paralysis. I actually have EDS which falls into almost all of the categories, aside from we think Vascular ( thankfully) although I do have a small MVP. Unfortunately, my dislocations which I had whilst doing gymnastics and ballet/sports as a child are now daily, and all my minor and major joints ( I even dislocate my larynx and thyroid very scary!). My hips won't stay in joint at all ( they completely dislocate) and as a result of big babies, bad deliveries, a slow speed car accident and an incompetent dr (they wriggle out!) , I am in the paralysed club. Something which is rare ( paralysis and EDS etc).

Are the seizures and ICP due to the EDS? If so is it Vascular or a feature of another type? I have features of all and so Have a "widespread mixed aetiology " diagnosis. Or is it due to the Chiari Malformation? ( I was tested for this originally when paralysis hit..)

I notice that you said that the Tethered cord doesn't show on MRI, very interesting. Did they diagnose it by observing it during surgery?

For me, my diagnosis was actually cathartic and explained a lot of things ( the EDS) and as I was having a lot of issues with not being able to pee, bowels and loss of sensation BEFORE the time of the actual no-going-back 'paralysis', finding what was going on there was at first a reassurance that I wasn't insane and then of course a mourning and down in my funk time. I still feel that way, since my career - my calling even, lol, has been shafted. However, I am a positive person and I do as much as I can for myself by finding my own way and being stubbourn! Do see the thread with my story in, above as it will probably explain it better than I can here. I notice that you say "before" you got sick. Did you not have any precursor to the EDS? ( I ask since it is genetic, and I am always looking at other's experiences. As the thread linked shows, I hid some of mine since I presumed I was either extremely clumsy and accident prone or mad)..

I am a mother and a wife too.
As for my relationships changing, as I explained my pregnancies added to the situation and as I didn't have a reason for it all at the time ( aside from SPD, nerve pinching etc) I was at a loss to explain my dislocations. I actually felt that my body simply was unable to do anything right and Premature labour with my first successful pregnancy compounded that. I had just got a promotion at work too and others blamed that for it, saying I was 'doing too much'.

My relationship with my kids is fabulous, I tailor things which we can;t do and make them into something we can. They have to clamber onto me as I can't lift them ( dislocations and nerve damage) and as a baby, my hubby would pass my daughter to me out of her cot at night, to feed. I managed to take as little pain relief as possible whilst breastfeeding, and then took those with minimal effects. Now, they are 5.5 and just 4 years and they are wonderful little people. I think that we are closer than a lot of mums and kids, because we do quality time and they have shown me that I can do anything- within reason, as kids do not see limitations like we do. For instance when I couldn't get outside the back, I got a tiny blow up pool and had it in the lounge - yes it took forever to fill up, and hubby had to empty, but we had fun doing it.! My son Has EDS too ( unfortunately) but he seems to have EDSIII and not the other categories and thankfully our daughter seems to have shirked the gene. If I had known I had a genetic condition I can;t say what I would have decided in terms of children, but I DO know that Paralysis due to EDS and its complications, even in those with severe forms like me, is very , very rare...so I think of that. Also, many people have diabetes and heart disease in their families and have children and may pass it on..different I know, and I can;t do anything about my decision as it was made before we knew it wasn't a funky Me thing!

In terms of my hubby, well I am copying something I wrote in another thread here, you can see the thread: http://www.apparelyzed.com/forums/index.ph...c=5532&st=0

I am the one who is disabled. When my husband and I met and started dating it was over 12 years ago and although I had unexplained issues ( my dislocations which later led to my paralysis) they were explained as being due to my competing as a Gymnast and Ballerina at a high ( regional ) level. So there was NO WAY that my now husband, nor I could have seen me where I am today. When we met I was in some ways very opposite to how I am now.


I know that I did not find him ( nor he find me) after my becoming disabled. However, I would argue that we found each other again since that time. Disability or not, we are and would have been two very different people now at aged 32, than we were at age 20. You go through many changes through those years. I would like to say that every relationship is at times hard work, especially through those changes. But if it is worth it, its worth working and at times, fighting for.

From the ages of 20- 32, we have been through a lot, most of it not unlike others ( non disableds even). I was just about to start UNI, and I was on a gap year working 50 hours a week at a hospital as a nursing assistant when we met. I went on to UNI to train as a Nurse and he was at a completely different UNI a year or so later. Then we had struggles with my issues beginning and my frustration, suffered infertility, got married, had a few miscarriages, had 2 very difficult pregnancies and i developed/had and got diagnosed with Three 3 which explained some things but which were to change my life completely.
Even if couples have a pretty plain sailing decade together, they still change, I am a totally different person to how I was a decade ago as is my AB husband. So its almost like meeting again with a bit of 'baggage', some 'memories' and a lot of unknowns, when One of you becomes disabled after such time. As you can;t even rely on "the bedroom", or any other pursuits you shared to tie you. Yes you can enjoy those things again, but for both of us, it was a new exploration voyage to the almost unknown.

Although my situation is somewhat complicated- I have had a deterioration and increased dislocations and pain and loss of sensation over a few years prior to my paralysis, it was still a very disturbing and shocking situation for myself and my husband. Neither of us expected it, and neither of us knew what to do.

We are still together, about 2.5 years from the actual point where I had the 'total picture' so to speak. So far, and I have no reason to think that it may change, we are together and have a very strong relationship. The key is that he loves me for who I am and is not bothered or put off by the chair etc. I see him for who he is too. I am physically, looks wise much the same as I was 10 years ago, whereas my then twig thin hubby is a little more chunky as he was then, however, I love him for who he is and Yes, I do still fancy him - a lot. The two are similar factors - extremes of a continuum.

Our relationship is complex, yet its also lighthearted and I can say that he is my best friend. After reading your reply to me, I would also like to add something that I tried to communicate in my last post. I know that it does not compare to tetras/quads etc, but I have increased pain and reduced function compared with others with my level of paralysis as I also have a connective tissue disorder. This means that I dislocate almost every joint, especially the major ones, countless ( literally) times a day, have fluctuating loss of sensation, no power grip ( can't lift the kettle etc) or ability to lift etc ( couldn't lift my toddler)... Therefore, I am considered by others ( AB mostly, granted) to be pretty fecked up in some ways. Now, I know it is not on par with being a tetra, but its still some crap to deal with and affects the things I can do and the way I have to do them considerably..or it would do, lol. My point was that I keep my husband as my husband and I either try and try no matter how long something takes, to do it myself, get someone else other than him to do it ( except at times I will ask him) or do it differently. My personal view is that he has never really been physically one to do things for me like some partners do for their spouses, and I like it that way. I hide a lot from him, and I am lucky that I can - I know. He also does things for me in other ways! ( Sorry sounds dirty! lol).. Even though my guy isn't "Mr Do-ey", I feel its unfair that you seem to feel that all men are incapable of loving unless they don't have to do anything! Thats just as bad as labeling women as 'nurturers'. Don't get me wrong it isn't rosy 24/7, my husband can be a pain in the arse and still doesn't completely understand, or see how things are. Maybe I am doomed if he ever does? lol..He is just a bloke who needs reminding to do things he has to do, without me having to ask him to do things on top!, so I don't..LOL

Anyway, I hope that this answers some of your questions.

Good to meet you,

Take care,

K

Thanks both of you for the info and reply!! Thanks for the encouragement also!!


K,
I'm confussed as to how my post lead u to believe that I feel that people can't love unless they don't have to do anything.

As for the EDS, I have type 3 and don't dislocate, thank God. However, I do have a shoulder that's permentaly out. Also, I am in pain due to it, my joits pop and hurt often. The EDS was dx/by a precranimum sample after my first brain surgery. It took them 3.5 hours to close me! The tissue was the consisitancy of "toilet tissue" in some places. They were concerned. I also kinked the breathing tube and they had to stop the surgery..and start it again! I gave them quite a scare, I can't do anything easily, it seems...LOL

My occult TC is due to the EDS. My spine is being pulled down and it's supossed to be higher up.
There is a surgery for this, but it's risky w/my conditions and they don't know if I will walk again.
Now that I have "drop foot" my N/S posted that those who have it, even in a mild form, surgery can't fix the paralisis. It's already done. I also have syringomelia and cervical stenosis. I also believe that the EDS caused my herniation. (Chiari)

I'm glad that you're in a good, strong marriage. It's nice to hear and read that. It gives me hope!
All relationships are hard and take work. Being para and having conditions like ours makes things difficult. It's good that your husband is supportive. I understand that u don't want to show him everything that u go through. I just hope u can when you REALLY need to. Also, it may be good for him to understand what you're going through by watching u on your bad days. That way, he really "gets it".

I understand that u don't want to equate EDS w/Para. However they are both DIFFICULT dx's and I understand that. EDS is a horror show. I know as u do. Mine effects me the most in surgeries and after.

My seizures arae unknown. I think it's due to the POTS and high ICP. When my heart rate goes off, I seize. the epitiologists I've seen don't want to "work" with me, just dx it as emotional, which I KNOW it's NOT. All b/c it's not on EEG's. So, I've been forced to lie here all day 24/7 until the seizures let up, which they have for now. The ICP, I don't know where that's cominf from, prob the TC.

My best to you... E

Hi again,

As I mentioned in my post, the relationship part of the reply was added from the post I linked to so I failed to take that bit out, i hope that it didn't cause too much confusion. Also, if you read a bit more of my posts here, you will see that THAT is not what I mean at all, never said it. That particular segment is like I highlighted in the reply, from a thread here which I pasted in my reply to sort of answer your question, without rehashing. I provided the link so that you may peruse in your leisure.
http://www.apparelyzed.com/forums/index.ph...c=5532&st=0



I am confused as to what you mean by this. I live with both these, Like I said, I have daily frequent dislocations and the pain from them as well as neuro pain. as well as the paralysis I have. If you had looked at my posts I have made on the board this would be apparent that I acknowledge both of my facets of my situation, I welcome you to take another look at my 'story' Be clicking HERE!!! and visiting my blog. This may help clarify things and dispel the opinion that i "don't want to equate EDS w/para" ( your words).
With regards to EDS affecting you after surgery - that is why surgery is not recommended in EDS. I know, however that It is sometimes difficult to avoid it.
I have had my share of feck ups occurring so am not in any way 'sheltered' about any of this.

I am happy to read that despite being EDS III you have no dislocations, although obviously am not so happy to hear about the shoulder issue and understand the pain thing only too well. Unfortunately there is nothing which can be done about my multiple dislocations. There is a theory that a new capsular surgery may be of some use to my shoulders ( will make a big difference to my life) yet this surgery is early stages and not worth the risk and trade off right now. Plus I am told my other joints would get much worse, although I am unsure as to how since they are already out more than in and my hips spend vast amounts of time out, flicking in and out of joint when I am out of my chair /at night etc..The paralysis is a kick in the teeth when down. It is actually like 'salt in the wound' for me, but I nowhere do not acknowledge it..

I wish you the best and hope that if your EDS affects you more in Surgery and thereafter, that you will be able to find ways to limit surgery or avenues to avoid- so that you do not need to have them. I am sure that you are seeing a Specialist in EDS, but urge that you ensure that he/she is aware of the particulars of the type of EDS you have. I hope that things improve for you, Be well,

Take care,

K


edited to add{ for your ease, here is the full post which I added to my post above, so that you can see why it was worded the way it was:

Thanks for the post. I do not have n EDS specialist, unfortunaley. There aren't any in NY. Plus, getting around is difficult b/c of the other issues.
I'm just doing the best I can with all of this, as I know you are.
My n/s have a lot of experience with the Chiari/eds/tc combo but I am unwilling to take the risks.