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I've been wanting to post about this.....

Guest Julia59

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Guest Julia59

I have been trying to find a way to articulate my words about the crazy stuff i've been going through.

This all relates to my NECK----a very bad neck. Although I am diagnosed with POTS, I also have a congenital cervical stenosis, and chiari without herniation---(AKA brain stem compression).

Dr. Grubb and Dr. Heffez are trying to work together to figure out weather or not my ANS dysfunction relates to my cervical spine/brain stem stenosis. My symptoms are not the typical POTS symptom. Although I have many of the same symptoms as others with POTS, I have other problems going on as well.

I am getting very worried because my neck has been so unstable---it's literally all over the place. There have been occasions when I just move it a certain way and i'll get a shock sensation through my neck--into my jaw and tongue. When I tilt my head back----even slightly--(putting on eye makeup) it literally gets stuck---and i'm afraid to bring my head back into place.

My right clavical area is all messed up, and I have a very weak radial pulse, and NO radial pulse when I lift my right arm over my head. My right arm is cold the majority of the time. I have constant ear ache type pain---although my ears are fine. It's clear I get headaches in the back of my head, but they are really weird ones.

My swallowing difficulties have gotten much worse---and I choke constantly----evn on my own spit. Now i'm starting to wake up suddenly with the most horrible feeling. Not like I used to with the hyper adrengic panic attacks. It's more like something happens to me---and then it wake's me up. I do remember coughing/choking. My husband said I started having a real deep snore at time---he said it sounded loud like a train. He said it sounds like it's coming from my throat---NOT MY NOSE. Does not sound nasal. More like i'm struggling for air.

Of course the pain is terrible---but i'm more concerned of all the weird things happening to me. My gait has gotten worse also. It feels like my legs are lead---and then when I try to walk---it's like trying to put two magnets together. It's like my foot has a difficult time making contact with the ground. Then If I sit for a while ---when I get up to walk, my ankle is all floppy-----like it wants to turn on me.

My gut motility is so slow---mostly bowel. I don't get the nausia---unless i'm really bad with the bowel motility. I'll usually pass SOMETHING before it gets to that point. Although I was prescribed neurontin for pain and reglan for the gut motility---i'm so afraid to try either of them. With all the crazy stuff happening to me at night in my sleep---I just don't want to take a chance. Maybe i'll try the neurontin during the day---BUT NOT AT NIGHT.

I just don't know what to think here. I have this big plate and screws in my neck---and i'm just afraid it's making matters worse---as far as my neck stability goes. In other words it's makeing the rest of my neck below and above level---c5,c6,and c7 more unstable. I can't even type without my neck slipping all over the place---especially in the lower portion. You just know when things aren't right-----and there are time's when I feel as if my ANS is failing altogether.

SOOOOO sluggish.

Since I have not had the hyper adrengic stuff I am a lot more active. This does not mean I feel good though-----

For the most part I feel pretty bad all the time. The only thing that kicked my a** into bed was those panic attacks. I was just plain afraid to move. Now the only thing that puts my down now is really bad fatigue. I always push myself---very hard. But now it's getting to the point of scaring me. ALL MY JOINT"S ARE UNSTABLE! My right shoulder especially. It literally feels like my body is pulling apart at the seams.

Dr. Grubb made another appointment for 4 months instead of the usual 9 month wait. So i'll see him again in September. He' knows something is screwed up----but I just think he doesn't know what to do. That is why he is trying to get in contact with my surgeon Dr. Heffez. I have confidence in Dr. Heffez, and I think he is an excellent surgeon. I just think I have more problems then we all bargained for.

I was thinking about have another neuro surgeon look at my situation for another opinion. I will still stay with Heffez. I just want to see if they would come up with the same opinions. Right now Dr. Heffez thinks I need more surgery-----chiari decompression. But i'm thinking my neck is more of a mess then that area. But the hard collar did not help with my symptoms---it only helped a little bit with the pain on my right side---shoulder/neck/clavical area. The Dr. Heffez said he wanted to talk to Dr. Grubb also.

My body just feels really messed up---and it's getting worse by the day. As long as I don't get the panic stuff---I just keep going. I rest between things I do---but I stay pretty active, however, it's getting harder by the day. The only major struggle I have now is with walking for more then 20 minutes. Then i'll get those symptoms I talked about earlier in this post.

I hope you all can understand what i'm trying to say here. I'm just so confused on what to do.

Julie :0)

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Dear god, Julie, my heart goes out to you. I don't know how you are coping with what you've described. I don't know anything about most of what you wrote except for the walking part. When the blood pools in my legs, I can't walk either. I twist my ankles all the time, because I also push myself. My legs feel like they are dragging, because I also trip a lot. I don't know why it only happens some times. I have had weeks between these episodes, but they have lasted for days at a time. I really have only recently recognized what was going on. I was having a hard time with anxiety, and those symptoms and the side-effects of the medications masked so much. Now I just try to ride them out, and try to be as active as I can stand.

I sure hope you start feeling better real soon. I would try to see another doctor for a second opinion, but I don't know which specialty to even suggest. If you have a primary care doctor, why don't you start there by asking for a recommendation?

Good luck, and I'll be thinking of you.

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Our dear Julie, Oh how you are suffering. We here feel for you. I would definitely get another opinion. Bring your internist into this. How can you wait until September to see Dr. Grubb. I would echo what Sue says and definitely start going for second and even third opinions. Do you live in the same area as Dr. Grubb? Why does he not want you to come back sooner? Have you pushed him on this?

I have found that you must be proactive in your care. You need to take the bull by the horns and run with it. You need to feel better and less anxious. Waiting four months is not a solution in my mind.

If only I could wave a magic wand and make it maker. Actually, that is a sayng my wonderful internist uses when I am really sick with POTS and she doesn't know what to do about it. When she says that, I know that she is doing consulting with other specialists to find something that will help.

Our prayers are with you that you start to feel better! :)

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Guest Julia59


I actually talked to my friend. She has had more then one surgery for her chiari. She suggested I go consult with some surgeons in New York.

A Dr. Milhordt----------not sure if the spelling is right. She said although heffez is excellent---------Milhordt does a lot more testing----so that you are definately sure .

I'm trying to find this guy in the computer.......................

Thanks again for the support---it means a lot to me.

Julie :0)

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Hi Julia, I was going to suggest the same thing... and it's doctor Milhorat. He's at North Shore in Long Island NY.

Here's the department info online:


in addition to having friends who've had surgery there, I have a friend who's a neurosurgeon there too. I have a great deal of respect for them.

Let us know how it goes.

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Guest Julia59

Thank's everyone!

I found Dr. Milhorat's name---my appointment is on July 20th and 21st. It's an eight hour drive---which isn't really too bad. Ron and I wanted to go to New York anyway. Now we have to find a hotel in Long Island--I hope it isn't too much $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ :)

Julie :0)

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