Mri Results----not Normal--- Np For Surgeon Said Four Different Issues

[Maxine]

I can't get any of the Docs who got a copy of my spine MRI report to give me the results. The orthopedic spine surgeon who ordered it is out of town-. --and my local docs have had two messages left for them. Meanwhile, I talked with the NP of the orthopdeic surgeon that was recommended by me EDS doctor, and she said there are four different issues, and I should discuss this in person with the surgeon.

They made an appointment ASAP for 8-23. I guess if I want copies, I'll have to drive to St. Vincint's medical center and sign it out myself----and try to make sense of it myself. I suppose it's a matter of circumstance in this case------------sometimes the doctors just don't get the message, or they have other pressing matters to deal with. I'm not sure what is happening. All I know is that I don't feel good at all, and the most comfprtale position for me is lying down.

My old PCPs office called me and said they had the results, but they would not tell me, and she kept asking me if I'm seeing a neurosurgeon, and if I had an appointment coming up soon! The hospital sent the results to wrong PCP---- They have since sent the report to the right PCP, and he is one of the docs I left two messages with.

It's too hot for me to go out myself today. This heat is horrible for my health issues. When I bend, it hurts from my middle back through to my sternum-this is something newer for me. If my husband wasn't working today, it would be possible to go out because he could keep the car running, and cool. I can't park the car in the heat, and go back into a 120 degree car. My brother wants us to go to dinner with him and his girlfriend, and if I went out-------I'd be done for the day...

What a thing to sit on for the weekend-----------------someone telling me the results are showing four different issues---(the NP working for the surgeon said she also sent it to one of the other orthopedic surgeons---A FELLOW, and he is the one that said I have four different issues, and that I need to make an appointment with the surgeon.

Maxine :0)

[pat57]

I understand that you want to know what they know.

On the other hand, you know it won't "hurt" you to wait. Otherwise they would tell you to go into the hosp.

And you will get your best info on the 8/23 visit.

As far as makeing sense of the MRI, there should be a report with it. You might just request the report, not the MRI's.

Ask "your old PCP" for a copy of the report-maybe.

failing the above

Is there a referring doc (in case of emergancy) to call?

If it was me, I would call them. The waiting could be torture.

[Maxine]

I'm assuming it can't be anything too terribly urgent, or I would be in the hospital---

However, it's a bit unnerving to have the NP tell you that the other surgeon said there are four different issues, and that I need come in to talk with the orthopedic surgeon. She squeezed me in for the 23rd.

She told me that she would contact the other surgeon to let him know about the headaches at the base of my skull, as they come on with slurring speech, and I told her I was concerned about this the most. This has been going on since May. Tonight, I was slurring again, and the only thing I did was go out to dinner, and before that I spoke to my son's girlfriend for 5 minutes outside.

I can get the report-----I already checked on that--- . I'll have to go to the hospital and sign a release, and show my driver's license ---(I have done this a few times, as I have had a lot of MRIs taken.) I didn't feel strong enough to drive myself there today. I know I can't make sense of the films, but what the radiologist reports, verses what the surgeon sees are usually always different, and it get's confusing---(that's what I mean about trying to make sense of it.) I can also get the films with the report. I will probably do that so the surgeon can have the actual films when I go to Cincinnati on the 23rd.

I'm tired of all of this. I have way too much going on at once.

Maxine :0)

[Ernie]

Hi,

Are you allowed to see your old PCP?

[BEE]

ALl I can say about it Maxine..is cant anything EVER BE SIMPLE??? CUT AND DRY??? I THINK NOT!!

Hope things get figured out..and hope it isnt serious enough that you need to be in the hospital STAT but at the same time I hope someone starts adrressing the instability issue a little more serious for you..

HUG

b

[Maxine]

Thanks girls------------------

I don't think I'm in an urgent status that I know of-- , but I know things with my spine aren't good. The medical student felt there was not definate instability, but pannus growth on the odontoid bone usually means definate instability, so I'm not sure. The orthopedic surgeon said I HAVE instability, and so did another surgeon. The other surgeon said four separate areas have problems that need to be addressed------are you confused yet?

To tell you the truth, I would rather deal with a fusion posteriorly for instability then an odontoidectomy--partial removal of the odontoid bone which is done anteriorly. You know what that means------yes, they have to go in through the front----AND THAT WOULD BE THE THROAT--- Then your on a ventilator for two days because with the swelling it blocks your airway. I don't want to jump the gun, but this is something I need to think about as a possibility if I continue to get pannus growth on that bone.

The surgeon said the pannus growth has increased when comparing past MRIs.

I'll probably pick up the MRI report and films on Monday.

Not feeling too bad today, but I haven't moved around much either.

Ernie, my old PCP is cluless, and she has not been very supportive. I would rather just pick up the results.

The time I called her after a functional capacity exam that caused a lot of pain, and more issues with my spine, she blew it off, Another doctor I called just said TAKE SOME TYLENOL---- I don't think either realized the scope of my spine issues, or that an FC exam of that type should have never been done. My EDS doctor wondered why this was done when my medical history is obvious that my spine is in no shape for that kind of testing.

For now I just deal with the stabbing headaches at the base of my skull, the weakness, numbness, drop attacks, numb and buzzing hands, clumsy hands, other spine pain, and of course worsening POTS symptoms.

If I were to have an emergency, there isn't any doctor locally that would take this seriously----except for my PCP, and maybe Dr. Grubb, but he has enough to contend with. My PCP admits this is something he can not help me with, and I understand that. However, he is willing to communicate with my other doctors, but in an emergency situation I would need a doctor who is familiar with the type of neurological problems I have.

Remember the neurologist that said "everything is manifested in my mind"---- And the other one I have currently thinks I have migraine issues----------AND I DO NOT HAVE MIGRAINE--------------------------------------------

The orthopedic surgeon in Cincinnati said, "what are they waiting for?"---------------paralysis?

There are other neurological tests that aren't normal for me that show obvious spine compression-------

Let me add that there are at least three doctors locally that have been very kind, and try to work with my other doctors. It's difficult because time is an issue for every doctor. One of my past PCPs was the greatest, but she is now in emergency medicine the last I heard in a hospital outside the county.

I'm trying to build on the positive experiences I have had, but still petrified every time I need a medical procedure done.

Three years ago, I wasn't like this.---

Maxine :0)

[BEE]

LOL>...SORRY CANT HELP IT MAXIROOOO...MIGRAINES!!!!!UGH!!!!!!!!

[dizzygirl]

hmm well.. maxine... im glad that you orth surg got you in so quickly.. hopefully now you will start getting some answers as to why you have been feeling the way youve been feeling.. i mean in more depth then what you found out a bit ago..

Take a deep breath.... and try not to worry..(i know easier said then done.. :0) ).... this surgeron is where you need to go to get acurate feedback...

im sorry tho that your left kinda in the lurch waiting for what these 4 things are.. that would be bugging me too....even if you cant do anything right away ya still want to know what s up..

much love and many hugs to you.. call me if you need to vent or just chit chat.. love ya juju.. dizz

[Maxine]

Thanks for your support---

LOL---LOL-------------yes, she did say migraines. She doesn't understand that more then one surgeon said I have problems in the cervical/cranial junction. Weather it's instability, or the "pannus growth" on the odontoid bone----it's not normal, and one would get mighty sick walking around like that for a while. This includes headaches in that junction of my lower skull--

Not migraines---

Today was Ron's mother's 80th birthday party. It was a surprise, and Ron and I took her out to lunch today and lied, creating a story with my Dad's help, to get her to go to the church where the party was being held in the basement cafeteria.

After lunch my Dad said lets go down river road and take the scenic route, which happens to be the back way into the church parking lot. Dad said he wanted to see the church, and we said let's visit my husband's brother who works there.

We had to make three batches of brownies too. My husband made the brownies because he wanted me to conserve my energy for lunch and the party. I was already feeling pretty beat up before lunch, and in a very bad mood from lack of sleep.

Without sleep all my problems are worse. He kept his cool with me as I spouted out different cuss words from being fed up with my limitations. I think I have reached my limit with patience in all this----or at least today I did. It was kind of funny as I was throwing the large rubbermaid containers on the floor as I was hobbling around the kitchen-----so mad because it hurt so bad to do anything. I'm usually better about dealing with the pain.

When we first arrived at the party I was feeling rough. I was nervous because we wanted her to be surprised, and we all wanted everything to go right. All went great, and she cried with happiness when she saw all her family and friends singing happy birthday to her. It was great, but I thought I wasn't going to make it---------I was so shaky, POTSY, and in such pain, but things improved a bit, and I got through it fine.

Tomorrow I will know my test results, because I'm picking them up---

Maxine :0)--------AKA Ju Ju