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Scared to find out what they will say in New York


Guest Julia59
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Guest Julia59

It's only a couple of weeks away---and off we go to NEW YORK.......

I need to get a second opinion on my chiari/cervical stenosis. I have felt like such a mess in the last few weeks! Actually my upper spine has felt so unstable that I have pondered about a second opinion for the last several months. Dr. Heffez seems to think the brunt of my problems are coming from my chiari---but at the same time he is concerned about my congenital cervical stenosis. You can get the same symptoms from both---so this has led me to be even more confused.

I can not do anything with my upper body without paying a terrible price. My pain starts at the back of my head, radiates down my neck, down my right shoulder into my armpit and accross my upper back. If I lay around the pain is not as bad. In the morning I feel the best----by evening i'm usually always a mess.

If i'm active that day---a typical evening is the pain I described above, along with shakeyness, numbness in limbs, higher HR despite the propranolol. bloating, slurred speach, slow thinking, short of breath, feeling of congested upper right lung, and profound fatigue.

My symptoms got much worse after my recent cold. I did a lot of coughing and choking. There were a couple of time's my chest burned with pain on the surface from straining and gagging with some of the coughing spells. I could not talk without coughing! Now the pain I described above is a LOT WORSE---to the point of needing to lay down for a good portion of the day. I just get up to do the minimum. Last night I felt the fatigue was something much worse because breathing was even hard to do. The worst of it passed after I rested. I guess I got so fatigued that it took my breath away. I also get a lot of ringing, swishing sounds, and a vibrating sounds in my ears. I have trouble with balance and gait only after being on my feet for a while---or if i'm very symptomatic---it's always very sudden like a drop attack---only I remain conscience.

I haft to schedule my TTT this week. Dr. Bolognise want's me to have another one done, because the last time I had one was in 2001. Then i'll have a 3D CT Scan of head and neck, and an MRI of brain, cervical, thoracic, and lumbar spine.

Then i'll see a neurologist for a couple of hours, then Bolognese for the surgical consult. I know I need to do this---but at the same time I don't want to know the results. There is a 50/50 chance I will still have the same symptoms even if I have the surgery. A lot of times if you get the point where I am at, symptomatic wise, your chances for full recovery after surgery are slim. I'm afraid I may not have a choice----if my neck looks as unstable as it feels to me on the 3D CT scan and MRI, I will probably haft to have the surgery.

I'm also afraid of the dye they use on the 3D CT scan... :) I never know how I will react to anything! I did OK with the dye on a regular CT scan in Chicago with Dr. Heffez's testing.

I guess i'm a little depressed. I just feel my family is not very supportive---and it seems as if they don't take any of this very seriously. It's almost like they think I chased down a Doctor who will validate my "imagined" cervical spine and chiari issues. You see-----to them----all my life-------everything was in my head. NOT REAL! I guess it's still that way even though I had one surgery already, which was very needed because I had less the 5mm of the space needed for my cervical spine due to the two herniated disc's--combined with my congenital stenosis.

Must have been in my imagination too--HUH........................Dr. Heffez must have been another one of those doctors who went along with my imagination.........NOT...

Julie :0)

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Julie,

I am new here and I am sorry that I cannot help you or offer you any advice on how to deal with your situation. I can only say that I hope you get the answers you are looking for!

Please share with me any info you have on cervical stenosis causing this condition. I also have cervical stenosis from a bulging disk and bone spur, and I have often wondered if it could be related because the sympathetic nerves run down the spine...

I hope you feel better and get good advice from the others on this board.

Ann

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Hi Julia,

You surely have a lot on your plate.

I know how frightening it is not to know what we have and how we can get even more frightened getting near a diagnosis. It is much more "final". On the other hand, you will be able to take a sound decisions.

Could you ask the doctors to test the dye before they use the full dose on you?

It's hard to deal with people who think we are hypochondriac. You know that you already have a surgery and that this thing is real. I think some people prefer to deny sickness rather than deal with the issues involved. Keep focused on your goal - get a second opinion and get a proper treatment. No one else but you know how much pain and suffering you have and you can tolerate.

We are there for you.

Hugs

Ernie

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Julie, try to focus on the fact that you may get some answers. They are not going to do anything to you that you don't agree to--and it's unlikely they'll try to do any surgery during your visit. So, maybe you're more scared that they'll tell you that surgery is again needed--and not so much about the diagnostic stuff?

The CT dye should be the same you've had before, so if you didn't react before, then you should probably be okay.

Try to keep yourself as clear headed as you can so you can take in what they're telling you. Take notes if you need to (or have your husband do that). You're in control of what happens--and you can always say "stop" when you need to.

Oh, and try to have some fun while you're there!!! You'll only be a few minutes from NYC--if it's not too hot, get yourself into town and see some sights in my hometown. Heck, if you don't see any sights, at least eat some GREAT food. If you want a great view of Times Square without the heat of the outdoors, stop in for a drink at the Marriot Marquis. The bar overlooks the best view--we stopped there our last time in the city for a break in the ac and a cola --and some good photo ops for our visiting relatives from Cleveland.

Nina

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Guest Julia59

Yes, I am afraid they will tell me I need surgery..............

From what I have read, it's not a fun surgery to have. I DON'T think it is an emergency situation right now-----so I know the surgery will be scheduled for a later time. Although I would just love to get it over with.

It's a big decision--------a lot to think about. If I don't have a chance at feeling better---forget it, unless I don't have a choice because of possible spianl injury of brain stem injury from all the pressue. It depends how much pressure they find on the testing. It may not be bad at all---and all these symptoms are mostly POTS related.

I just really don't know.........

Thank's for the support, I really appreaciate it. I'm just really feeling so confused, and it helps to know that you guy's are in my corner.

I really want to see Manhattan-------but i'm becoming less and less tolerent to heat. Even in the 70s, if the sun is out, i'm doomed to be profoundly fatigued and shakey. I've been getting more and more fatigued lately---I don't like it......

I'm determined to make the best of it though, and try my best to see NY-----I've always wanted to go there. I'm a people person---the more people---the better.

Were staying at the Andrew Hotel for a discount rate. It's a pretty expensive hotel, but with the hospital discount, we can manage it this time. WE are just staying three nights, and a continental breakfast is included.

Julie :0)

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I'm new to this site, but not to your pain. I've had severe chronic pain for 6+ years and I'm just now finding a Doc to work with. If your scared about the injected dyes for tests, ask for a quick allergy test, or possibly a nuclear study. They are both easier than having the reactions, I'm allergic to iodine so I understand the fear of reaction.

Good luck on your tests, travel safe and I'll say a prayer for you :)

blackwolf

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