My appointment with NSG

[Guest Julia59]

WEll---I should have known----

It has taken a couple of days to get my faculties together as this appointment really threw me for a loop.

I have been told by two well respected neurosurgeons that I have a variety of problems with my cervical spine and chiari---or chiari related conditions along with instability in the cervical/cranial area.

Then I seek out a neurologist whom I thought might be helpful by cooperating with Dr. Bolognese in New York. We were both hoping he would watch my neurological progression---weather I would remain stable of not. Unfortunately as you have all heard my issues---(probably too much---- ) things have not been going very well.

Well the NSG I saw at The University of Michigan (Ann Arbor) Wednesday told me my spinal/cranial issues are nothing ,and my symptoms have nothing to do with any chiari of cervical spine problems. Well---one thing I do know---is that I was never told my symptoms were in fact realted, I was only told some of them could be related, and that my ANS issues could be something separate altogether.

He pointed to my latest brain MRI and showed me the small posterior fossa which he agreed was small, and also showed my were the lower brain was extended through the foramagnum (spelling?) (aka Opening in the skull joining the spine to the brain stem). the herniation was not severe, but you could see that the area was packed pretty tight. He said I had normal CSF flow, but the CINE MRI showed NOT NORMAL, and that is was partially blocked posteriorly.

As far as the retroflex odontoid, he said there wasn't one, but Dr. Bolognese said there was with pannus growth formation. The NSG in Mich. did show me the pannus growth---but said theRO was not significant---therefore I didn't have one?

I told him that I know the area isn't stable as I can literally feel it. I can't move my head slightly back or sometimes to the side without grinding, crackling, and sharp pain resembling a razor cutting. I also said I have ligaments or joints-(whatever) dislocating in my neck and then snapping back----very scarey when that happens---

He didn't think I had any instability and was not concerned. I hope he is right---I would hate to continue walking around like that if in fact it IS unstable.

He said he would mention the name of an autonomic nervous system specialist to my neurologist---(whom by the way I don't think I will be seeing any more).

He said I needed to see a good ANS specialist---not a "cardiologist"--(Dr. Grubb) is who he was referring to. He said I have ANS issues that need to be further addressed.

One of the questions he asked is if I had to---could I run. I'm thinking-- what?

I suppose I could for about 20 feet---then I would be smoked after that. Yes, my legs still work, but they are weak. I have good days and bad, but the weakness is progressing---as i noticed agian when I tried to walk the length of the Mall yesterday. It was difficult---and angering.

It is also very upsetting to be drilled like i'm faking this whole thing. Do you really think I want to go to these extreme lenghts----going to one Doc after the other? I can't stand going to the Doctor. Do you really think I would reveal the nasty truth---that it is difficult to keep up with the old ladies walking around the neighborhood to----it's not something that a lot of us like to admit, but it's reality for some of us.

I don't know if it's the ANS issues or spinal issues---I just want help so I can feel better, and get my life back together.

It is very confusing because all the Doctors are well respected in their field---and i'm get conflicting opinions.

And it's very very depressing when I feel like I was rammed by a giant log square in the middle of my back knocking all the wind out of me, just from one night of 3 hours sleep and attending a 25th wedding anniversary. This is what happen to me just from one night of bad sleep. I only feel half that bad otherwise.

It's not normal to feel like you have the flu everyday. It's not normal to have all these neck/cranial issues. It's not normal to have a constant low base humming in the back of the head by my ears. It's not normal to not be able to sit up for only an hour of so---and then need to go lay down because you feel unable to sit up. lot's of times I don't lay down---I just keep going, but if I do, i'll pay for it. I'm robbing from Peter to pay Paul my grandmother would say.

I wondering if this Doc really thinks I WANT surgery. Not in a million years. I just want to make sure i'm not putting my upper spine/brainstem at risk for injury. I won't have surgery until absolutely necessary.

Dr. Bolognese does not want to rush me into surgery---he just wants to help me and all his other patients. I'm sure his intentions are purely professional and ethical. I'm in quite a fix. This is what happens when you try to get honest help!

I just wanted to fill you in for what it's worth.

Julie :0)

[MightyMouse]

Hi Julie,

sounds like your appointment was disheartening. Sorry to hear that. I'm sure many here can relate to the fact that going to a new doctor is usually a complete unknown territory, unless you are going based on the recommendations of others with complicated medical histories.

Hope you are able to find someone who can stablilize you. Have any of your doctors suggested physical therapy to stabilize your joints from a muscular perspective? I found it really helped my head, arm, back and neck pain.

Nina

[Guest Julia59]

PT sounds logical---and I hope that I can get some that would help strengthen those area's, but if i'm truly unstable----I would have to be very careful in the neck area.

I still have not heard for Dr. Bolognese, and from what I know of him, and from all the research I have done on my own and from waht I saw on my visit with him in NY , he sounds to be the best it that area.

I'm just confused right now, and still struggling daily just to maintain my home. I'm tired of my husband coming home from 10 hours work to help me.

He knows I won't ask for his help unless absolutelt necessary. Lately---it's been a struggle. I truly would not pursue this any further if I wasn't worried.

I avoid my hard cervical collar to keep my neck muscles working. Otherwise I would lose the muscle tone I do have and make the instability worse. The problem is the ligamants in the area too. I can't even change my position in bed without something popping----

There are still a lot of DOCS that scoff at EDS---thinking it's not something that needs to be addressed. The other night while rubbing my husbands shoulder muscles both of my wists kept popping out. He asked me why that was happening---I told him it must be the EDS as it happens all over now---even the knee---but thankfully not bad in that area yet.

This Doctor in Mich. never once considered EDs to play a role in any of this. I'm just chalking it up to uninformed and uneducated Docs who are not willing to look outside their little box.

How very unfortunate for many.

Thanks for the info----I have been thinking about some possible weight lifting with small weights 3-5 pounds to atleast strengthen the arms and shoulders----perhaps it will help with supporting the neck a little more. I think I can get away with some therapy, just not the junction near my cranium. The hypoplastic artery on the left side, and the prominant artery on the right side have not really been addressed like it should eaither---and that is just another issue in that same area.

I feel like i'm whining a lot here---so please bear with me everyone---I hate doing this, but I need to vent and get this off my chest.

when Dr. Bolognese calls me, I will ask about more PT. I have had some traction and some exercises to help strengthen the legs and lower body, but none for the upper body. Swimming was supposed to help that, but I couldn't tolerate the temperature of the pool---too warm.

Julie :0)

[Laura]

Hi Julie, so sorry to hear about this appointment. I was hoping you would find out something a little more conclusive. I was wondering about what you'd written regarding your lower brain extending through the foramen magnum. This is an indication of Chiari Malformation, right? Does he feel it is not significant enough to cause problems? Dr. Bolognese felt there were issues with that? Did this guy read the CINE MRI? This must be terribly frustrating- every doctor you see has a different opinion! Are you going to be speaking with Dr Bolognese again after this assessment? Will he review these results and consult with you about them? You really need to have a good conversation with him and I am sure he will be able to help decide what steps to take next. Hang in there! Laura

[Guest Julia59]

Thanks Laura,

The Chiari Institute-(Dr. Bolognese) only sent part of the MRI---not the CINE part unfortunately. There were other views that showed a partial blockage, but the NSG in Mich. did not elaborate on that.

If I didn't have all this stuff going on---and I knew it was just the POTS, I would just drop it and deal with that.

Get this--------this neurologist that sent me to the NSG said I have fibromyalgia, CFS, and POTS------along with ANS dysregulation. When in the heck did I get fibromyalgia? And isn't CFS just part of the POTS?

Then he added that I have anxiety and depression-----OK----well I guess so when you dealing with this kind of confusion---who wouldn't be------?

Julie :0)

[Ernie]

Hi Julia,

I am sorry that you still don't have answers for what is going on.

I think that you should keep Dr Grubb even if you see a ANS specialist.

It amaze me how all those specialist can't come up to the same conclusion.

It's a hard decision to make whether or not to go ahead with surgery. I would think about it twice.

Ernie

[morgan617]

Wow Julie. I guess that's all I can say. I think the word "mild" should be taken out of medical terinology!!! MILD doesn't mean it doesn't hurt, or not feel well, or anything. It's such a relative thing. Jake's on call doc said he has mild crohn's from last scope. Well his mild is about 10 poos a day. If the doctor did that, would he consider it "MILD" and not treat it??? No way, he's be looking for anything to help it. So I hate that word, because it doesn't mean squat in terms of symptoms. Why can't they go by those instead,

You feel really lousy, regarless of what your tests showed and to have 20 different stories just reinforces my point. It should be, you have chiari, period. you have ncs, period. you have arthritis, period. and so on. Then you should be treated for the symptoms, period.

I am really sorry this is happening to you right now. You will be in my thoughts. I was wondering if you wore a cervical collar? And if you do, does it help? morgan

[morgan617]

Sorry, I seem to be having a real problem with my vision tonight, so lots of grammatical errors, hope you understand what I'm trying to say! morgan

[Guest Julia59]

Morgan,

Yes, I wear the cervical collar. I wear the Aspen Hard cervical collar in the car, and try to avoid it at home as I don't want to lose the muscle tone. Dr. Bolognese told me to always wear it in the car---I think for abvoius reasons. A whiplash would not be good--------- .

I also wear the soft cervical collar in bed. I can not sleep on my side without it as I need the support, and it makes things a lot more comfortable.

I have not heard from Dr. Bolognese yet---I hope to this week.

I'm getting more and more depressed the more I think about all of this hoopla.

What a dog and pony show that visit with the NSG was-----ugggg..........

I am anxious to see his letter to my neurologist as I will get a copy also.

If he said anything in that letter that isn't true---I WILL CALL HIM ON IT!

One advantage I have is that it is my body, and I know when something isn't right-----and I will fight until someone get's it right.

Thanks for keeping me in your thoughts Morgan, and thanks again to all of you for your support.-------

Julie :0)

[Sophia3]

Julie

I am sorry for what you put up with at the NSG. That is just so depressing.

I hope you get some better answers soon,

hang in there.

Sophia

[DancingLight]

julie,

i'm just following sophia from one post to another tonight...she's gonna think i'm like stalking her or something like that! oops!

anyway, i'm late on the band wagon too...but wanted to say that even when i don't get to reply i keep you in my heart always...you have been throuhg the ringer.

um, anxious and depressed...in would be incongruent if you were not these things! i mean, come on, are you supposed to be singing 'life is grand' or something right now???? good grief.

okay, just chipping in with my support. i won't even go there with the other stuff b/c i might blow my top about what you've been through!

later alligator!

emily

[Guest Julia59]

Oh Emily that is too funny "LIFE IS GRAND"

You made me laugh---and I need that as I have to face the SSDI psychiatrist this Tuesday-----------------

I'm going to talk about spiders crawling on me, and that I bat at them often. Also, I am fond of them once I catch them, and often keep them as pets.

Thanks for keeping me in your thoughts. I am so glad to see you posting more often, and also so very happy that you are doing better. That nasty old gall bladder threw you for a loop----but now your snapping back.......

Keep on keeping on,

Julie :0)

[morgan617]

Julie, I don't know if you've had to see the psychiatrist before, but I just flat out told mine life was not grand, I had never been so sad, I had worked forever and look at me now. He was very sympathetic. I will wiggle my nose and try hard to get you a good one! Even though it tickles the wart.... witchy haggy morgan P.S. I posted this and think I erased it checking the spelling, so if it's doubled up, just look at the time I wrote this and you will understand, cackle cackle

[corina]

Julie,

I didn't read everything, but I wanted you to know that I'm thinking of you. You're having a very hard time lately. I hope you have a very good talk with this psychiatrist. I'm sure he'll understand that your situation is a big challenge for you and difficult to deal with.

Take care,

Corina