So Last Comment...or Two...lol

[erikainorlando]

Since my return from Vandy I saw my neurologist's pa. She read thru everything and was very worried as she saw me shuffle into office and start spasming..

Anyway, so she is sending me for this compression MRI. She mentioned that my lumbar spine has thinning along with the cervical spine. She said in fact that my loser spine was swollen. I didn't think too much of it but when my visiting nurse came today she also said it had some edema. Later this evening I looked in the mirror and saw it looking bruised along with the swelling. I called the nurse and she said to go to the ER. I of course didn't as I feel ok...my tu\ypical anyway...and my son is sick.

It makes me wonder what the swelling could be...it also make me think of cerebral spinal fluid. I heard if you are leaking spinal fluid it can make it hard to walk intermittently......does anyibe ave any info on this or anything like cervical spinal stenosis?

My nose runs all the time too...and yet I am not allergic to anything...so I thought it was vaso motoro rhinitis...now I am rethinking this....

I am tired of thinking and rethinking....and I want to get well and stay out of the hospital

Furthermore, my old boyfriend is coming in town this weekend (not to see me...he has family getting married)...and I really thought by this time I would be well and he would think about all he missed out on....now he hears about all my hospital stays and I think he is so happy we broke up....

Just asking.....I walk in the mornings and then as the day progresses I get to not be able to walk at all....if forced to stand I will start to tremor or spasm....body movements out of control. If I recline I am pretty ok...just never really feel well.

Vandy just said POTS is secondary for me...now I am scrambling and scared....any ideas.................welcomed.

Love you..Erika

[erik]

I know Dr. House would do a lumbar puncture... the kind that measures the "escape pressure", not just contents. They do a lumbar puncture to almost every patient on that show it seems!

I had runny nose thing for a while, and it tasted odd (not like a normal runny nose). Made me investigate the CSF leaks and such, but they didn't end up matching me as far as I know. CSF pressure variations create inherent dysautonomia because that pressure is like the "calibration" of the whole brain trunk, hypothalmus and such... which is the "heart" of the ANS. If it is floating around or out of range then "everything" else in your ANS floats around (a.k.a dysautonomia). Overpressure gets noticed pretty quickly, but I think underpressure can squeak by (IIRC). I think I read a report of a patient with crazy low pressure that nobody thought to check and then when they did, the docs were like "how was this person still getting around"!?!?! The CSF is constantly regenerating, so if the body keeps up it can go less noticed... if the body falters in that process, symptoms get severe (temporarily). This was to do with the nasal area leak stuff, but I suppose it happens elsewhere?

If things are leaning this way, I suppose a (neuro???) expert would know what other supporting signs to look for and see if LP or focused spine or nasal imaging is merited. Symptom wise, I think most of it falls in to the pit of "nonspecific stuff" that we all have... so I don't know if something will jump out without specific expert investigation.

Don't worry about the darn ex-boyfriend! Guys are all jerks. (Oops, did I just say that???

+++ There was someone on this forum that had the sinus leak situation I think... perhaps they are still around to comment. Hope so +++

Edited March 22, 2010 by Erik

[Maxine]

Erika,

Your symtoms sound like something to be investigated further. I had my nose run recently like that, almost like water coming out. I had a bad headache that day, but it wasn't a typical tension headache. IT felt like pressure, and my ears feel full all the time. I have a headaches nearly every day now, and it's usually more near the base of my skull, and into my ears. I have edema near the base of my neck on the right side, and also have fluid in mastoid area on the right, but a full ENT workup showed no past or present infections for middle ear. I investigated CSF leaks on and off for several years, as this flid has been there for 5 years. A CSF leak in the dura can give this appearance.

"CT findings associated with cerebrospinal fluid (CSF) leaks include fractures or other bone defects; meningocele; focal fluid accumulation in the ethmoid air cells or in the frontal, sphenoid, or maxillary sinuses or mastoid air cells; and, sometimes, pneumocephalus." Quoted from link below;

http://emedicine.medscape.com/article/338989-imaging

You can see by my signature line, and many of my other posts that I have cervical cranial instability (CCI) secondary to my EDS. My POTs is secondary also. I was diagnosed with congenital cervical spine stenosis in 2002 along with a small posterior fossa. I also have several herniated or bulging disks.

Yesterday morning I woke up with a horrible pinching and stabbing pain in upper thoracic spine, and my neck had pain beyond my usual, and the base of my skull felt like someone came up behind me and hit me in the head. I was struggling to walk, and my heart did a big THUD when I moved quickly to get my ringing cell phone---or was it something else---I'm trying to remember. Anyway---I moved quickly whatever it was. I was a mess, and my speech was slurring more then my usual amount of time. I usually slur more at night. I have no idea what I did in bed to wake up that way. I did noticed I woke up once on my right side, and I normally slepp on left because my head doesn't pull away from my neack as badly. When I went to cincinnati to see the orthopedic surgeon, he showed the 3D CT scan to me, and there's a measurement device on there that measures the different areas of the spine. The C1-C2 area is 7.9 mm off on the right, and 7.5 on the left. My left vertebral artery is missing in my brain, but not my neck, so when I asked about this, the orthopedic surgeon said the CCI is affecting this, and likly cutting off the blood supply, thus the enlarged right vertebral artery.

DESPITE all of this going on, many NSGs, and one other orthopedic surgeon has said absolutely nothing is wrong....and in fact my last radiology report of that same CT that had the CCI clearly identified by the othopedic surgeon in cinn. said there's nothing wrong with my cervical spine despite many other CT and MRI reports showing pannus growth on odontoid bone, broad based disk bulge on c1-c2, many other herniated/bulging disks, mastoid fluid ect. 2 reports said congenitally small cervical spine canal, and posterior fossa. The thoracic spine MRI was said to be normal by another radiologist from the same hospital.-----and of course this hasn't been the case on other reports. My husband can clearly see my upper thoracic spine near my neck curves to the right.

I feel that something isn't right with my CSF fluid. Especially since NIH confirmed the CCI as well in 2008. In 2004 a CINE MRI report said my CSF of partially blocked posteriorly as compared to anteriorly.

My instability is rotational, and these measurements were based on my head turned to the left and right. The gap should not be more then 1mm.

I can not walk for then 10 to 20 minutes without my body starting to shut down from OI, and also getting very stiff, disoriented------along with severe overall body weakness.

I don't think doctors are ever going to take this seriously. My geneticist is trying to find ways for doctors to better understand the link between EDs and CCI.

I have to go back to Cincinnati for another 3D CT because the one he looked at that was done locally wasn't good quality, and the CCI could be even more severe then what he reported.

I'm definately thinking this could cause CSF issues for me.........but docs here won't listen, and it's causing other complications with the testing I need one on my GI system----(family history of cancer). I called cleveland clinic, and they are going to help with this.

I hope you get someone to investigate this further for you!

Maxine :0)

[tinkerbella]

erika,

I'm so sorry you are going through such a rough time sweet one.... Try to keep focused on you and getting better. You will find you knight in shinning armor the one without the red flags when you are feeling better. I hope the docs get to the bottom of all of this real soon my friend.

take care~

bellamia~

[Maxine]

I just read my post----sorry, didn't mean to make this sound like it's about me---it's not. There's a lot of us out there, and I'd like to see the medical profession to become a LOT LESS IGNORANT ABOUT THIS! I don't mean to grill on, and list my issues and symptoms time after time---------------it's just that I can't believe people have to deal with these kind of health issues when it seems so obvious something is wrong.

I sincerely hope your neurologist continues to work with you. She sounds like she's got some good sense in that she was worried about seeing you that way, and now ordering a compression MRI. By the way, what it a "compression" MRI. I know what a regular one is, and an MRA----I've had several of those.

Please keep us posted on what you find out. I'm sorry about your old boyfriend, but when one door closes, and new one opens with great opportunities.

It's his loss.

Take care.

BIG HUG,

Maxine :0)

[erik]

There are vertical MRI's but wouldn't expect access to one or a radiologist that will go out on a limb interpreting anthing with a non-standard technique. Not in our modern lawsuit and "by the regs" era. May or may not be any more accurate than compression MRI. Doubt anybody knows:

http://verticalplusmri.com/

I seem to recall a "mystery diagnosis" episode about CFS leak too. Might be this one but I could be mistaken:

Season 5, Ep. 10: The Woman with a Knife in Her Head

They have an index of diseases as well as an episode guide. I guess they can be watched on demand in iTunes for $2 an episode (or some can be found in non-legal sources too I suppose). "Woman Who Kept Falling Down" is Season 5, Episode 4.

If you end up with an episode of your own, what will you title it??? Perhaps, "The Woman with the Jerk Ex-Boyfriend... and trembling collapse upon standing?" If they need an actor to play the jerky ex in the episode... I am not a trained actor but reportedly I can act like a jerk pretty well and I could use the income.

[Maxine]

It's their "standard technigue" that will end up getting them in trouble. Don't they understand how serious this is? If it's obvious to us-----coooommmmmeeee onnnnnnn! I'm mad for people with this. I hope your neurologist will look outside the box, and continue to help you. Some try sometimes, but then back down because of certain "standards".

When I went to the orthopedic surgeon last week the trip was a stress on my spine. Two days after I leaned forward on my bathroom sink putting weight on my arms, thus radiating up my shoulders and neck. I got such a horrible pain and sensation, I thought I might collapse. I was going to go to ER, but wat's the point.

It's like fighting a losing war.

Maxine :0)

[erikainorlando]

Gosh you guys make me laugh!!! And it is good to laugh!! Sent the day vomiting. Back in the hospital in Orlando.

Monday my visiting nurse said "your spine is swollen and you are shaking badly...get to the hospital". So I went Monday nite and after having something like seizure in the ER waiting for the doc finally got admitted. I keep having these...and they never are prepared. So laugh at this...last nite I had anohter seizure like thing...nurse wanted me to take a pain pill. I told her I couldn't swollow at that time...so she put me on NPO and I had to wait 1 hour to get medicine to stop the shaking!! So this morning they gave me all my meds with t tsps of water and with everything going on I started vomiting...all day. It is crazy!!

Hospitall neurologist was nice. He had sent me to Vandy. He is calling the autonomic doc at Vandy. I want to go home. I hate this in case you were all wondering.

MRI looks normal. Everything looks normal but I can't stand without going into severe muscles spasms or seizure....not sure of hte difference. I am conscious but I can't control my movements. Can't walk but laying down I am strong like bull! ??? Why do I get all these weird ones???

Erik you made me laugh so much. Ex-boyfriend is the least of my probs now I am sure...just jealous that he is happy living his life and I am begging nurses to get me meds to stop my convulsions and praying for a medical test to point out a problem!! Preferably that can be fixed!!!

The hard part of this kind of illness is the lack of compassion from many who don't think you are really siick. My PCP looks at me like I am just trying to get drugs...and at this point I would take anything that would stop the shaking and make me feel better!!!

All the best guys....together we can get thru what we wouldn't ever be able to tolerate alone.

Erika

[tinkerbella]

Erick,

I'm back from my uncle's having passed and have been still thinking of you. I'm surprised your not on an antisiezure med already, just for nerve pain. Try to think positive that all will be well and you will be fine. So many people love and care for you.

Bellamia

[ajw4790]

Goodness! It seems like things have been never ending for you! I am not sure if I have replied much before, but I have tried to keep up somewhat with what you are going though. I just haven't had the patience etc. recently to type much. But, I did want to finally comment, and say that I can not believe what all you are going through, and the total lack of medical help/answers that you have gotten. I am certainly hoping that there is a breakthrough for you and your medical team soon.

Can they consult with other top hospitals like John Hopkins, Mayo, Cleveland Clinic etc?

I can not remember if they have looked into and ruled out something like Periodic Paralysis? Also, have they looked at Chiari/Tethered Cord and/or anything that could compression parts of the spinal cord when standing? B/c as you say it is orthostatically linked.

I hope they find some help and answers for you soon!

[Maxine]

Erika,

They really need to investigate this further, AND look outside the box. You need more opinions on the MRIs----or have another one done. They can do a CINE MRI that specifically measures your cerebral spinal fluid.

I understand the lack of compassion part------------Please hang in there. Your PCP doesn't have a clue, and if he/she continues to think this way, I would move on the find a better one.

Sending you a BIG HUG,

Maxine :0)

[juliegee]

Hi Ericka-

I just wanted to check in on you to see if you've had any improvement OR progress re. a DX. My heart breaks for all you are going through. You have been so brave. Try not to stress about your kids and responsibilities. Everyone & everything can wait for you to heal. Give yourself permission to totally relax and heal. Stop worrying about what others think. (That's their problem!) You are very sick and deserve answers about what is happening to you.

I'm sending lots of love, hope, prayers & hugs.

Stay Strong-

Julie

[sue1234]

Boy, Johns Hopkins sure would be good for you right now. But, I know how hard any more traveling would be for you at this stage. I sure hope they think to possibly get a phone consult with some special neurologist--do doctors even do that? They could forward your pertinent testing info and then the doctors could talk it out over the phone, huh? I hope someone thinks outside the box for you.

[tinkerbella]

Let go and let your higher power take over right now....

love,

Bellamia~*