Back from my trip to see neurosurgeon

[Guest Julia59]

Hello everyone,

I am back from a very tiring trip to Milwaukee to see Dr. Heffez.

First I will say the trip was quite challanging. On the way we ran into a severe thunder storm. The clouds were black and we were heading right towards it---smack in the middle of Indiana. We had to pull over because we couldn't see a thing.

The trip from Chicago to Milwaukee seemed to take forever due to traffic, but the trip back was much worse as we had to go during rush hour in Chicago---there was no way to avoid it. My appointment was over at 4:00 and it takes about an hour and a half to get from Milwaukee to Chicago----which is 5:30, the worst time to be on the Chicago freeways.

We wanted to take Lakeshore drive which runs along Lake Michigan, but we didn't know how to get there coming from Milwaukee. When Dr. Heffez was in Chicago, we always took that way to the skyway which leeds you to the turnpike. We were stuck in Chicago traffic for 3 hours------------ We didn't get home until 12:15 am. Every semi-truck that went by us was flying--it was unbelievable. This was at night---it was driving my husband nuts as they were riding the tail of our car until they passed.

The appointment went well, but I found out my cervical stenosis is more severe then ever. Yes, I still have chiari/small posterior fossa and a dominant vertebral artery. I told him I still feel quite unstable at the cervical/cranial junction, and told him how I get that stuck hinge feeling when I tilt my head slightly back---and then it snaps and scares the living daylights out of me every time. He said the EDS can cause the instability.

Unfortunately the stenosis is causing myelopathy which means the spinal cord is not working well and will make my symptoms worse. I failed a number of neurological tests. He was very meticulous on the examination---and I was also examined by his physician assistant. The PA was young and sharp---and also very maticulous. He checked and doubled checked---my neurological function turned out to be worse then before I had my first decompression for the herniated disks.

Decompression of my cervical spine will be needed via laminectomy sooner then later. But not a nice surgery. However, better then the surgery needed to fix cranial/cervical instability---fusion of the cranium to the cervical spine----this will not be needed which is good news. He takes the instability seriously, but feels it does not warrent drastic measures at this time---his concern was more towards the cervical stenosis that runs the entire length of my cervical spine.

My fatigue and weakness gets worse by the day, and breathing and swallowing have also become more difficult. Of course the numbness in the arms in legs are about the same--maybe a little worse.

I have a lot of thinking to do.

My SSDI was denied---I found this out by calling the local SSDI office in Toledo. He was very nice and tried to offer suggestions on what to do next. I told him I had a handle on it already. I'll fire my present attorney of course as she is not equipped for the job. I have already contacted the senators office to open up an investigation into the Bureau of Disability Determination.

They have obviously not taken the medical records of two cooperative MD's into consideration----and in addition, they have based their decision on a half whitted MD--(if you can call him that) who works for SSDI. He had false information in his report that clearly is contradicted by the other physicians. He even went so far as to say I didn't have surgery, when I told him I did just three years ago on my cervical spine. He also said I have POTS with no tachycardia----oh, just all kinds of false information that you wouldn't believe. I don't know how they get away with that, but i'm going to give it a real good shot at pushing the issue a bit.

I got on the phone with the SSDI adjudicator---(they make the decision---along with medical--(so called experts). I told her she must get paid to get me denied, and that they were only trying to buy time to avoid paying my SSDI. I would get a nice chunk of change as back pay, and they don't want to cut loose with that, even though it is my money that I paid into SSDI. I told her I was having her and The disability Determination Bureau investigated ---and that I had copies of everything in my file. I have an appointment with the new attorney on Aug. 5th.

I asked them how they felt when they pull this bullroar on a single mother ---or someone who lives on their own who depends on SSDI to live. No answer of course. I will succeed at at getting the answers behind the denial of my SSDI.

I guess i'm done frying your eyes from this dreadfully long post.

Julie :0)

[Sunfish]

julie -

welcome back!

i'm sorry that your trip wasn't better than it was in terms of neuro-news, but also glad that it wasn't worse. sort of a double-edged coin & comment i realize, but like you titled your post it seems to go both ways. it's awesome that dr. h doesn't think you need to be pursuing the major surgery but obviously there are still tons of things you're dealing with & the other surgery on the nearer horizon. that said, though, it sounds like dr. h continues to be a good resource who is a straight-shooter who is both knowledgable & caring, which i know you & so many of us have come to dearly appreciate.

sorry you had to deal with such cruddy traffic. my dad worked in chicago for the past two years or so & even as someone in the baltimore/dc area i couldn't imagine the traffic he put up with. of course it didn't help that he had to commute back to toledo but just within chicago it was insane. i'm just glad you made it home safely & didn't have any encounters with semis.

about the ssdi, i know so many get denied initially so that doesn't surprise me, but the things in your file re: not having surgery & the like....that's totally nuts! sorry you have to keep fighting but glad you have a plan to move forward and that you realize it's the system and not you.

hope you can get some rest now that you're home...your next "big event" is next week, right?

:-)melissa

[persephone]

Well, you have confirmation it's physical, which is great0- now you can move on and stop doubting your mind.

And don't worry about SSDI- you can always reapply. In this country (UK), people rarely get disability benefits the first time they apply, I'm told. More often than not they have to appeal the decision to get anywhere at all...

I'm glad you have some more answers.

But sorry about being stuck in traffic like that- I can't STAND traffic jams. And whenever I'm stuck in one I invariably need a wee!

[michiganjan]

Julie, I am sorry to hear that you need surgery. Do you know yet when you are going to do this? On the other hand, if it gets you where you need to go then you will be better off in the long run.

It is too bad about being denied disability. You have a clear need. Keep on fighting and you will get where you need to go.

Michigan Jan

[Ernie]

Hi JUlia,

I am glad you made it back safely home.

I am sorry that you need another surgery. When do you expect to have it done?

I wonder why kind of POTS it is without tachycardia, ah! ah! ah! (joke). The guy must not know what P in POTS stands for!

You never had a surgery? Where did he get this information! He should be fired.

You need to continue fighting for your SSDI.

Ernie

[DancingLight]

Way to go Ernie! he-he.

Julie,

UGH! I am really sorry about the needing surgery thing. The one thing that I am grateful for...is that you are in the very best of hands with Dr. Heffez. It's such a mixed blessing and a LOT to absorb emotionally...so give yourself some time to take it all in...

It's good news to KNOW why and what needs to be done, disappointing news to knwo that you have to endure another surgery.

As for SSDI...you will get it eventually, I know you will...but these people sure define INCOMPETENCE! good grief!

When will you have surgery???

Emily

[Guest Julia59]

Thanks for your support and replies everyone----------

I need surgery----but I have no idea when. He left the ball in my court, but stressed that I need to get this corrected so the myelopathy doesn't get worse.

I don't think it can improve----the surgery can prevent further damage from releasing the pressure off the spine. Some do see improvement---but it's never promised.

This will be thought out very carefully. A laminectomy scares the you know what out of me. I'm very worried---as the surgery I had before was hard on me.

I was out for 4 1/2 hours for that one---I think this would be longer.

I had to hold my head extended back yesterday on the neuro exam, and today i'm so sick from that. It took me a long time to post---I kept stopping because I was so tired mentally and physically.

I was so worried about my husband because he had to work 10 hours today after driving all day yesterday and then only 4 hours sleep, so I did a few things around the house. I swept the kitchen floor, unpacked our clothes, and started dinner. I thought I would try to vaccuum-----well I got so wiped out from those stupid simple little chores--I couldn't do it. I just hate making my husband do things when he gets home. Tomorrow my son is going to come over to do some of the heavier chores.

I need to realize my limits. I have a swallow study Friday---then the loop recording device implanted next Friday---then I think i'll take a break and pretend i'm normal for a little while and have no medical appointments for a little while. I just want to pretend that i'm not dealing with this for maybe just one week. Just go out and try to have fun----while keeping in mind my limitations. In other words, I won't take the advice of that crazy neurologist and go jump on a trampoline. That would be suicide for me---------

When I mentioned this at my appointment yesterday my husband heard a long nooooooo after I mentioned the trampoline----I didn't hear it, but he did.......

How in the world did I end up getting to see such a messed up neurologist? Well that's over anyway---I'm done with that---but i'll bet his coments didn't help my SSDI at all. Maybe i'm not done with that------

Julie :0)

[Sophia3]

Julie

I am glad you got some answers from Dr. H. I don't envy your surgery but its sounds like you truly need it.