Confused-Don't Know What To Do Now???

[Guest guest]

Hi Gang: First of all I would like to Thank everyone for all of the support

I've received. You guys/gals are great and your words mean alot. Thanks

again!!!

Well, last time I posted anything was about two weeks ago. At that time the

neurosurgeon stated he found the cause of my Syrinx. He stated it was due to

ACM-I and that decompression surgery could fix things or at least stop the

Syrinx (no promises) from progressing and causing further problems on down the

road.

Yesterday I went to see the NS of my choice and was told that he did not see the

ACM-I on my MRI films. He spoke with the original NS that diagnosed it and had

him look at the films again. The first NS stated he did not see the ACM now and

that maybe he got my films confused with someone else. (my wife and I are

sitting there thinking...yah right...how do you mix up films on something like

that...especially with ACM-SM being so rare...it's not like the Twin Cities Doc

has dozens of these sitting around)

Any way...my NS stated he felt my Syrinx located between c5 and c6 was too small

at this point in time to do anything about it. He feels given it's small size

that it should not be causing any symptoms or problems. If it would have been

caused by the ACM he would have done surgery; but now he suggests the wait and

see approach. As far as my symptoms go he states the total loss of feeling and

numbness in my left arm is caused by the Ulnar ?sp nerve in my elbow being

pinched. I have had absolutely no feeling in this arm for 3 months. He could not

explain the same symptoms off and on in my right arm, my headaches in the back

of my head, the burning sensation, etc...other than maybe stress related.

I asked him what he felt about the possibility of the Syrinx causing permanent

damage and progressing down the road. He said that is possible, but that mine

is too small to do anything with at this time. Maybe he is right...and I should

just leave it???

His course of action is to have me come back in three (3) months and have

another MRI. At that time he also wants to do a CT of the head to rule out any

Hydrocephalus related problems. He stated he would then continue doing cervical

MRI's once every 3 months for a year and then switch to an MRI once a year. He

states he's interested in my case and wants to follow me over the years.

I am so confused now. Do I let well enough alone and be thankful ACM isn't the

cause? Do I worry about the Syrinx causing problems down the road? Why did one

NS diagnose ACM and then change his mind after my NS spoke to him about it and

say no ACM? I would think you either have ACM or you don't. I find it hard to

believe one Doc could mis-diagnose it and the other not see it???

Anyway...I guess 3 months follow-up should be fine to stay on top of it...but I

am just worried that they missed something or that by letting it go...I will be

asking for more severe problems later in life. He insists that he has 5

patients with a Syrinx and have had no problems with them. Looking for

input...thanks again for your help

Dan Dupuis: Minneapolis/St.