Bad Experience Today

[Maxine]

Hello------

I'm so mad right now, I'm not sure what to do. I saw an orthopedic surgeon, and also a student doctor who just graduated. First the student doc would not allow me to speak without constant interruptions, and he could not connect the EDS with anything regarding my CCI. My husband was stunned on how he kept repeating that the vertebral artery or the problems with my neck could not have anything to do with my symptoms or my headaches.

The ortho doc was worse, and felt there was nothing structurally wrong with my spine whatsoever, and felt PT of some kind might help-----possibly an "aerobics class".!

My husband heard this, and then looked at me an laughed knowing that just walking is difficult for me. He never checked gag reflex which was missing completely when another do who was a NSG checked it when I was there a couple weeks ago.

This is so odd------hmm, NIH docs, Cincinnati Children's doctors, and even some local docs know better. My other orthopedic doctor feels I have some serious problems with the CCI (cervicalcranial instability), but I need an NSG due to the possible vascular complications. The radiology reports have reported abnormalities on a lot of them. NIH doc was very concerned, and said I need to be watched for strokes due to the enlarged vertebral artery, and missing left vertebral artery if I have BP spikes.

Symptoms now;

Headaches----severe and stabbing starting at the base of my skull-----sometimes constant, and always worse with activity, coughing, straining.

Tingling, vibrating sensation, and numbness in arms and legs---more intense in hands and feet.

Slurring speech, missing gag reflex, total body weakness, urine retention. problems with walking gait, trouble swallowing, and choking--------some others also, but to fatigued to think.

I also had very low BPs last week even sitting, and my heart rates were low too, so HR was not compensating, and I wasn't able to function well at all, so spent most of my time last week laying low.

I discussed that EDS has many secondary effects, one of them being spine instability. First hesaid he didn't know much about EDS, but later said it's not possible for EDS to cause the problems I'm having. He then asked me to touch my thumb to my wrist. It only went down to about a 1/2 inch away not fully touching, then he seemed more dismissive. He has no idea how hypermobile I am, and it's maddening because I feel like a rag doll without any control over my joints and ligaments.

My deep neck tendons and ligaments are now pulling and having spasms so badly that I feel it in my face---and all the way up to my ear.

I also asked the doc about the mastoid fluid in my lower skull that has been there for 4 years. If this was an infection from mastoiditis I'd be in pretty serious trouble, so obviously it's not, so what is this fluid from? Both doctors ignored this completely. I told them vascular problems can happen with classical or hypermobile EDS, and I said my poor vascular tone, CCI, and enlarged vertebral artery are a bad combination. He had my try to tough my chin to my chest then told me to tilt my head back. When I tilted back I put my hand behind my head to support it, as it will slip. He told me this is not possible.

I asked about the swelling near my lower neck and clavicle, and he said this was a muscle spasm. That's funny, because this "muscle spasm" seems to make the headaches more intense the more the swelling appears. The swelling looks like some kind of fluid/edema.

All I can say is that I hope he's right and I'm not driving one day with my two granddaughters in the car and something happens with my CCI or vertebral artery. Monday night I thought I was going to pass out from the pain, and I never used to get headaches like this. I always had duller headaches at the base of my skull, but not the intense ones running up the right side of my head like this.

I give up-------------I guess I just wait and take my chances. I can't have other ortho doc who does believe DO have serious problems from CCI do a fusion, as I think there's other complications that are in need of a neurosurgeon, and it seems NSGs want NOTHING to do with US EDS FOLKS. I called EDNF to let her know my experience today-----my head is still throbbing.

I gave him my geneticist's business card, and I also gave him the EDNF DVD. I told him it's important for surgeons to see this, and he looked at me and said, "duly noted", and left the DVD in my envelope. The student doc came in and picked it up just after.

I certainly hope this surgeon doesn't have a patient someday that has a vascular problem during surgery, and the patient happens to have EDS.

Feeling this medical institution is in serious need of an education on EDS............

I just want to slap some sense into some of these docs. May God help us all with EDS, dysautonomia, and other conditions closely related.

Maxine :0)

[mkoven]

very sorry to hear about this. You may want to call your eds geneticist and get recommendations for knowledgeable neurosurgeons--who as you know are very few and far between.

Energy is in too short supply to waste it on people who probably won't be helpful. Maybe I'm a cynic, but I'm not sure that individual patients can change most doctors' medical views--it probably has to come through other doctors, through their research/publications, and perhaps organizations that advocate.

[Maxine]

Thanks Mkoven---

Yes, this is true------publications on research is something my geneticist brought up.

You should have see the look on this doctor's face. He looked so puzzled that I kept coming at him with good valid questions that he gave me no answers to------the old deer with the headlights in the face look............

I DO try to have a sense of humor, but it's sobering to realize most doctors/surgeons won't listen to thier patients. This IS sad, as their patients are the very people who employ them. They need to come up with a better way to disagree, rather then act like fools with a "GOD COMPLEX". This doc was the defination of that. In 2005 I had a doctor who didn't agree with the instability, and we had a nice respectful conversation. I didn't have a bad word to say about him------------how could I?-------------- he showed respect........ And this doc did say I had pannus growth.

Here's the kicker, the student doc said he could see some instability on the X-Ray, but the senior doc said he didn't-----and he said the pannus growth on the odontoid bone must be a ligament or something. It sounded so haphazard. We walked away scratching our heads wondering if his surgical skills were as bad as his ability to communicate in a coherent way.

A friend who I speak with often on the phone who has almost the same exact situation I have, but has a bigger pannus growth has had the same struggles.

She had one doctor tell her she had hydrocephalus and referred her to a surgeon for a shunt. She went for a consult, and he was very rude and dismissive, and refused to treat her. She is well seasoned at this, and knows quite a lot about all the complications brain stem compression can cause------one of them being vagus nerve problems-------------and on and on....................

I'm wondering how anything will ever get published if more doctors won't get out of their little safety box.

MY EDS geneticist is stumped, and he said he tried to find NSGs who are familiar with EDS and spine instability but he hasn't had much luck.

I called EDNF and discussed my situation.................she didn't seem surprised.

Maxine :0)

[Guest tearose]

Is it possible to speak with a potential new doctor on the phone prior to going to the office and having to find out there that they don't have a clue?

All the energy it takes in presenting of information, explaining, validating...I am tired and frustrated for you!

If I can't get to speak with the doctor, I will speak to their nurse and try to get a sense if what the overall attitude is there. If I don't think they are positive or patient, I won't make an appointment. I want to be able to ask all my questions, share what I have learned and feel like part of the team!

[potsgirl]

Maxine,

What a complete waste of time for you and your husband. I'm sorry that your experience was so frustrating and that we have to search so hard for good doctors who actually understand our symptoms and know what we're going through. Big hugs your way!

Cheers,

Jana

[Janey]

Idiot, idiot doc. I've had similar experiences with some doctors who really don't want to understand what's wrong with you. One Doctor I used to go and see used to stay silent until I'd left the room!! I complained about him and published a review of him online, I felt so angry. Have faith that other Doctor's will be better and keep looking until you find one and speak to them. The squeaky wheel gets the oil!

Janey

[toddm1960]

90% of doctors today are clueless, don't waste your limited engery. Fire them on the spot and look for another who knows about this or is willing to learn with you. It's taken me 27 doctors and three and half years to get dx'ed, and I still don't have a doctor that knows how to treat me.

[Maxine]

Thank you for your support and understanding---

I'm still mad, but feeling less rage anyway. I went to my regular psychologist appt. today, and he happens to also be the psychologist of my friend who just passed away from a ruptured aorta, complications of her EDS. I have been going to him on and off since my POTS diagnosis in 2001 to help me deal with frustrations and struggles just like this, and the other struggles with disabling symptoms and pain.

It's mind blowing how much these docs get away with. I'd like to see them held accountable, but their not.

How can a surgeon suggest PT like arobics? I can't even sleep on my side without my neck slipping-----what does he think bouncing up and down would do??---not to mention how impossible that would also be with my POTS. Does he know how absurd he sounds? He's a man that went to medical school for many years and became a doctor, wrote research papers, and taught medical students to become our future doctors. He's telling someone to go and bounce around who has had three different geneticists diagnose EDS with hypermobility and vascular involvement, and all have said my EDS is affecting my spine and causing instability. The rest of my joints are also unstable, and arobics would only damage them further. I have to wear my hard cervical spine collar in the car because the bumps, potholes ect. affect my neck so badly that my only relief is laying flat and not moving.

I can't tolerate narcotics for pain, and I haven't tried anything other then tylenol because I'm afraid to try anything else because of my ANS problems.

ICE helps, and the massages my husband gives me------------BUT it's only temporary.

Does this man think the geneticist at NIH is wrong, or my regular geneticist who knows my sleep apnea is because of brain stem compression?

I feel worn out just from trying to figure out how this man was able to remain a doctor. Maybe he's a great surgeon----he knows how to CUT and repair, but he has NO ability to communicate to a patient that falls into a more complicated picture----------------meaning what you see ISN'T what you get. That's how EDS is, it can make us come apart at the seams, but you can't always visually see it.

Maxine :0)

[mjan]

OK.. I promise I will read ALL the responses..but first I gotta say..I AM SO ANGRY for what you went through. !!!!!

WHAT IDIOTS !!!!! Not to EVEN BELIEVE YOU!!!!

All I can say is that you held your own. Proud of you for that!! Why didn't your hubby go with you.. being a MAN and all..he could have witnessed to them ALL you have been through.

YOU my dear Maxine have my undying support!!

Warmly, Jan

[Maxine]

Thanks your support also Jan---

My husband went with me, and he told them something--I don't remember. He's not very good at being caught off guard like that. I'm usually always on guard and ready to reply to obtuse remarks or advice from a rude doctor.

I was only caught off guard once by a psychotic nurse who stalked out my postings on the discussion forum and verbally attacked me on the phone.

This is something I still scratch my head about---what was she thinking?

Last night my head hurt so bad it hurt into my left ear, down my neck............. I'm wondering if I should cancel my appt. with the cleveland clinic on monday, as it will probably be a waste of time.

Maxine :0)

[mjan]

OK..now I am mad FOR you!!!! What is with that nurse? I work with RNs who are suspicious of those who use alternative supplements etc. THEIR drugs work.. yes..but can be harsh.

I have one idea. If you look up a chiropractor..don't get scared now.. but one that uses B.E.S.T. method. Its using a finger along the nerve paths and with a counter point on your nerve pathway they UNBLOCK where nerves are pinched.. they do NOT manipulate your vertebrae. They would listen at least and be honest with you about what they can and cannot do.

I had one who saved my life..just prior to neurosurgery and he saved my life and career. I was totally disabled..could no longer walk nor sit. It was chronic.. 20 years and this neurosurgeon was going to try and do surgery but thank God he thought he would start a condition that would only make me worse .. I was in my mid 30s so he did not want to contribute to ruining my spine. I have to thank him to this day as I was already in the hospital and learned he would not do the surgery. Of course when you are in pain you want to be OUT of pain. But that PAIN is what lead me SPIRITUALLY to seek out this specialized chiropractor.

Anway.. its a thought. I am SOOO lucky. I switched job and had to start ALL over with all new docs..and each and every one LISTENS.. respects MY theories and opinions AND even got ONLINE with me to check out this web site to help Diagnos this rare condition!!!!!

Can you believe that?

HUGS.. gentle...but hugs my dear Maxine

Warmly..Jan