Experience with new Neurologist and Rheumy...Disaster and Hope

I know this is quite long...thank you so much for taking the time to look through it:

(I was scheduled for Dr. Clair Francomano..Connective tissue specialist in Baltimore, MD, but I did cancel, b/c I felt I could not physically sit in a car for 12 hours, which would be the third 12-14 road trip in 3 months. So I scheduled a new appt w/ a Connective tissue physician here in SC at the Medical University of SC, and a consult with a NS to help me manage my pain from the SM...but that appointment was anything but successful.) Read on........

Well just got back from two new consultations at Charleston , SC. My husband and I drove down (only about 3 hr drive), and made a vacation out of it and stayed on the beach…Glad we did b/c we needed it after all the stress and all.

So I saw a Rheumatologist about the possible EDS, and a new NS regarding the Syrinx, and management for it. I feel I really got no answers and I just feel like throwing my hands in the air and saying “F- it”!!

So I saw a Rheumy at the MUSC in Charleston…If you would like her name, e-mail me and I will happily give you any of these physicians names.

Since this is a teaching hospital…(and I don’t know how I feel about me going to this type of appt. again), you see a resident first, they try to gather all the info..Then you see the attending physician

.I have to say the Rheumy appt went okay….she did not think I have EDS, and I did not have a score of 9/9 as was done at the TCI.

My knees were not lax and only one of my elbows was. She looked at some of my scars, including my c-section scar and said it was normal. She pulled on my skin and did see some stretchy skin, but nothing that REALLY was stretchable, that really stood out.

So in the end her conclusion is she does not think I have EDS, but she is absolutely NOT opposed and supports me in doing the Genetic Testing that would R/O the connective tissue issue.

There are just some things that bother me and correspond w/ things in my medical History (such as hernia, and congenital hip dysplasia, and the disc desiccation in my spine).

She said she would research further and get back to me and write me a Rx for the testing I wanted. I like having options and I like ruling things out, so I think this appointment went okay, b/c I feel that I still have my hands in advocating for myself and still being in charge of my healthcare.

She did say that I need more sleep, and to try exercising, which I am going to try. I am always so afraid to exercise and have a flare up, b/c that’s what happened last time… I thought about trying Yoga…Have any of you tried Yoga?

And She did write me a Rx for PT, to help strengthen my upper body joints and for massage w/ spasms etc. etc.

So All in all…it was an outcome that I could agree with and I was happy with that….

BUT the new NS appointment was a disaster:

Again this is a teaching hospital so I saw the resident…she asked some questions, had me do the “DUI Walk” as she called it, had me hold my hands out and took my films to review with attending.

So in walks this man, a nurse and the resident. The NS sits down in the chair. He never examined me…did not even touch me (except when I offered my hand to shake his in the beginning and end)

.He straight out told me that he though all my symptoms were coming from my neck, b/c of the loss of the cervical lordosis( in general terms my neck is “straight”)….which I agree with him on that that my neck is straight and there are some issues going on there.

But to say that this is the etiology of all my symptoms is completely hard for me to believe. He said he has seen several TCI patients, and basically what they tell us is all garbage, and that even if a person’s tonsils are a tiny bit off…that they will call you Chiari “O”…

He said I DO NOT have a Chiari and that my so called “syrinx” is not a syrinx…this is what he told me:

“It is not associated w/ a Chiari, or a Tumor and you did not have any trauma to your spine; there is not cause for you to have a syrinx”. “That is not a syrinx; a syrinx that fills up the spinal cord with a tumor…now that is a syrinx”. “But what you have does not impress me, so you can just forget about the syrinx”.

When I tell you I wanted to come up out of my chair and just plant him one real hard…I really did want to. Obviously that would be the wrong thing to do. So then I just thought about walking out, and then I felt that feeling like you are about to cry. Just all these emotions and thoughts at once…. My husband just looked at me in horror b/c he knew I was going to blow.

So this physician started to continued on, and I stopped him and said ”NO I AM NOT GOING TO JUST “FORGET” ABOUT THE SYRINX…..why should I? (The Nurse, Resident and Doctor and even my husband just looked at me like I had 2 heads) And I continued on to say:” You are telling me that what I have is not a syrinx? Then what do you call it?( He would call it “Asymptomatic Hydromyelia”…which essentially is the same Shit, only he is telling me that the symptoms I have are not from this “cavity that did not close all the way when I was coming together IN MY MOTHERS WOMB!!!) I told him…”Then you explain to me why in 2004 I had all the symptoms has an MRI that showed a 1mm (small I will give it that)syrinx from T5-T9, and I still continue to have all the pain and symptoms and in 2008---Just last year, I had another MRI that showed a 2-3mm Syrinx from T4-T9? Why”?

He paused and pretty much told me that it could be from different MRI machines and MRI is never 100% accurate...blah blah blah..and that having more MRI's is a waste of time and money…I shook my head at him, and told him I did not agree with him and I want annual MRI’s to check on my SYRINX

I am not a doctor guys…but I will tell you this…it does not take any one of us to have ANY medical experience to know our bodies, to know in our heart that SOMETHING is not normal.

What I know from seeing this guy is that yes, he is a Brain Surgeon. He might be a pretty damn good brain Surgeon, HOWEVER: Don’t walk into his office with anything less than 5mm syrinx…and don’t even think about walking in with a Chiari “O” or anything less than5-7mm of herniation.

And….make sure you put on your clown shoes and clown nose, b/c he likes to be impressed!

I really believe that b/c he operates on skull base tumors, he probably DOES see patients w/ Syringes and SM, but they are probably rather large syringes, b/c of tumors, so I do believe him when he says a small syrinx does not “impress” him.

But to tell a patient “just forget about the syrinx” is NEGLECTFUL, and poor judgment as a physician and a moral minded person.

On a scale of 1-10 on his bedside manners….he would get a 2..only b/c he smiled one time.

He told me to take some Aleve and to go to PT for traction on my neck. I do know I need some PT on my neck, but I am not going to “forget” about my SYRINGOMYELIA, b/c he is not impressed.

What is SCARY is this:

He also told me I can lift over 20lbs, I can strain during a bowel movt, I can lift my son up as much as I want, I can lift weights and I can have a vaginal delivery and I can have an epidural or spinal.

I left that office in tears, my husband just looked at me and I know he was frustrated too…

But all in all, I AM HAVING another MRI in November to check the size of my Syrinx, and I will try and figure out the whole PT thing, that is safe for me, and I will R/O the connective tissue issue.

But what eats me up inside and makes me want to bang my head through a wall is that this Jerk didn’t even touch me, never did an examination, never touched me, and I will get a bill for God knows what now and he just sat on his ass and told me he wasn’t impressed.

I will NEVER see him again, and I don’t have a medical degree, but he is wrong about the syrinx, I know I have Syringomyelia and I know that the Syrinx DID grow…and I am not going to just go around lifting cars and pushing 100lb shopping carts and let some anesthesiologist stick some needle in my back b/c some Moron Doctor is not impressed.

I am sorry…I just needed to vent, I haven’t been able to since we left the office on Thursday, and then I told my hubby let’s not let it ruin our weekend at the beach, so I honestly did not even think about it until last night when I got back home. But I did have the best time at the beach with my hubby. I am just frustrated and I know some of you, actually a lot of you have gone to these doctors and you leave frustrated as well.

Now I really understand what that is like and all of my heart goes out to you, and if you know what is right in your heart…keep fighting, keep searching, don’t give up, keep fighting.

Thanks ..and if you read this very long vent…thank you for reading it

Take Care, Thoughts and Prayers
Trish