A Very Bad Experience---i Don't Know Why I'm Shocked

[Maxine]

Last week we went to a Major University Hospital not in my state, but only 45 minutes away to see a neurosurgeon--------(yes, these MDs can be the most difficult with their ego's), so I did go armed. However, I thought since my EDS geneticist called and spoke with the chief of neurosurgery in advance that I would be taken more seriously. I still see the orthopedic surgeon recommended by my EDS doc., and he is very good, but we need a local neurologist/neurosurgeon who is willing to use conservative measures, and watch the progression on my cervical/cranail instability----(CCI), and work with the oral surgeon who will remove my molar---------------so it can be done safely.

My EDS doctor was concerned because I am showing more brain stem signs, one of them being urine retention--------and also, trouble with chocking on spit and liguids, trouble swallowing, and other symptoms. I told him my neck/cranial area has been subluxating several times a day, and it's becoming more painful, and difficult to hold my head up. The other night when my husband and I took care of my new granddaughter who is now weighing about 17 pounds, I thought my head was going to explode. Just from picking her up a couple times that night, I could feel everything move and shift from my mid spine/sternum, all the way up my spine to my cranium. I just shouldn't pick her up, but who doesn't want to hold their grandchild. My husband, or my son and his fiance usually put her in my lap for me.

The oral surgeons are from the same university Hospital as this NSG. They are supposed to take care of this molar that needs to be removed.

Here's the problem, the CCI is getting worse, and the molar needs to get extracted, but the university won't pull it because the EDS Doc from NIH, and my regular EDS Doc said avoid pulling it due to the CCI. However doing a root canal will only temporarily fix the problem, and the tooth is necrotic, so I wouldn't save it anyway. So we were going to see what the neurosurgon could do to help with stabilizing my cervical/cranial area, and just get the dang tooth removed.

After discussing this with EDS doc at my appt., I was under the impression that he said the tooth could be pulled, but with strict precautions for the CCI. The oral surgeons were saying they won't extract it because of what both EDS docs said.

I e-mailed my regular EDs doc, and let him know I was going to discuss ways of stabilizing my neck, so we can avoid problems by just removing the tooth.

Well--------------------we saw the neurosurgeon, and I could smell the arrogance walking in the door. So---"almighty surgeon" said he didn't see the problem, and asked me, "what are these doctors putting in your head"? He did a plain x-ray that is often used for diagnosing CCI. However, this is not the only testing used. I told him there is pannus growth on the odontoid bone, and this would not be there if I DIDN'T have instability, as this is caused from friction from rubbing on something it's not supposed to be rubbing on. I told him that my EDS docs, 2 neurosurgeons, and an orthopedic surgeon all said I have CCI, and so did two radiology reports. I asked him if he saw these reports, and saw the reports and clinical notes about the congenital cervical spine stenosis, my other spine instability, and desiccation all up and down my spine????

I told him that many people with EDS have CCI, and he raised his voice saying this is very rare, and not true at all. I told him he apparently doesn't have much experience with EDS, and how it can affect someone's spine, not to mention other parts of the body.

I told him my head subluxates off my spine several times a day, and that there is no way he can convince me the instability doesn't exist based on what I feel daily, and what top EDS specialists, neurosurgeons, and the orthopedic surgeon who are experienced with both the EDS and CCI have diagnosed. He said "YOU DO NOT HAVE INSTABILITY, AND IT IS PERFECTLY SAFE TO PULL YOUR BACK MOLAR, AND YOUR NECK WON'T "BREAK" ANYMORE THEN MINE WILL". I told him to put that in writing and send it to the oral surgeons. He said he would be glad to, and he will send copies to my docs as well. I told him NO, send the copy of your clinical notes to ME----and I will forward them to my doctors. I will make several copies, and hold on to them. If something happens to my CCI, I will have his "clinical notes" saying my CCI does not exist.

As bad as I feel daily, and feeling stunned every time I have this subluxating, and abnormal movement in my neck-----I was in no mood to listen to this very obtuse man. I felt like I was scolding a teenager. This was exactly how his attitude was. On the way home I cried---------NOT because of the way HE was, but because he is throwing a monkey wrench of getting this much needed extraction done SAFELY.

I e-mailed both my EDS docs, and was very fortunately to catch them before they left for Huston, Tx. for the EDNF conference. I was very lucky they e-mailed back. My regular EDS doc said he will confer with his colleagues at the conference and see what he can help me with. The other EDS doc from NIH sent a very nice supportive e-mail.

This helped a lot. Still praying this tooth hangs in there. I wonder if some of you wonder how crazy I must be----"still talking about THIS TOOTH". BUT, I have had lots of dental work done over the years---------never a problem---NEVER. Not until I crashed with POTS.

Even then I still tolerated fillings, cleanings, crowns ect. ---(with no anesthetic) BUT, this is an extraction-----------AND the day I had my last extraction, it the day I crashed with POTS. Then you throw in the CCI, and all avenues need to be covered to insure this is safely done. Then----of course in the beginning of this molar mess the medical insurance was draggin their feet to have this done in a hospital setting. Finally, get referred to a hospital who has an roal surgery dept., and I have been ping ponged back and forth 6 times with 3 different oral surgeons, and my next appt. isn't until Aug. 25th---------With the oral surgeon who was afraid to do the rooth canal because of the CCI, and she was also cooncerned because I have long roots--------making things even more difficult.

So sorry this is long-----but I haven't been posting regular updates, on this very extensive mess..........

Maxine :0)

[firewatcher]

Maxine, I am so sorry that you had to go through that! Slam him on the medical review sites (healthgrades.com, etc.) At least your other doctors are supportive. This makes me soooo mad! I have to go back to an endocrinologist who said "I should spank you! You were wasting your time with specialists when I knew exactly what was wrong." He didn't know and he was wrong, but he is almost the only game in town. I don't know how you controlled your temper. Hang in there!

Many supportive hugs and positive thoughts! I will pray for you!

Jennifer

[Michelle F.]

Maxine- I'm sorry you have had such a rough time getting this taken care of. Please know there are others here who care! I'm one of them.

Michelle F.

[cardiactec]

Maxine,

what a bunch of bologna. I am so sorry for your experiences lately. how rude and arrogant of this doctor. I know it's easy to say, but try not to take it to heart and please DO write this doctor off. You deserve so much better, so much more understanding, so much more compassion. I know it's difficult because sometimes, probably most the time we walk in meeting new docs without first hand knowing if they are going to treat us this way or in ways that all patients should be treated -- with dignity, sincerity, and compassion -- wish we could know beforehand where these docs who treat people so poorly were hiding out so we could avoid them like the plague.

So sorry for such a cruddy experience, yet again. keep holding on though, there are doctors out there who know how to truly care for their patients. i will be praying that you are lead to someone who will respect you and take care of you.

take care,

cardiactec.

[Maxine]

Thank you so much!

Your kind words, and sincere support mean a lot.

My husband was stunned. At first he thought I sounded hostile towards the doc, but he realized that I was just standing up to him, because he was wrong. I kept my composure, but when the doc got rude with me, I just kept at him, and telling him he needs to do some research, and that instability is based on a lot more then one x-ray. there are several different measurements taken of the posterior fossa. That is why I kept trying all this time, because I knew my instability was there. It became more prevelant after the surgery I had in 2002 on my cervical spine. Two disks were removed on c5, 6, & 7 and replaced with doner disk, a fusion, and a titanium plate added.

I felt pretty decent, and had improvement in symptoms---but still had some moderate POTs issues on and off. I was told the steroids given to me during and after surgery helped me feel stronger. In fact the doctor at NIH said the steroids may have helped with the bowel problems. Those are a mess from the EDS, but she thought I may have some inflammatory process going on, and it still needs to be checked. In early 2003 some symptoms started to come back, then more pain, and it just sort of continued from there. Now I'm at the point where I find it hard to believe how I got this bad so quickly-- You know----------you do get used to walking around like this......

Get this---------- ! After all this discussion, and he's looking more at my MRIs while talking to me with total disrespect, he then tells me I have I have two fused vertebrae----c4, and 5. At first were thought he was talking about the fusion I had done, but he said it was just above that. He said it was Klippel-Feil syndrome----(BUT, he had trouble pronouncing the words)-------------then I corrected him, because I had read something about it before. I'm not sure he knows what he's looking at.

Oh, and I forgot to tell you---------------a local radiologist said my arterial anatomy was "esquisite after and MRA was done in 2005". I did not find out my left vertebral artery, and left posterior arteries were missing until another MRA was done this year in April at the NIH EDS study. I asked my local neurologist why this was never mentioned, and she said to let her compare the two films, and she will get back to me. she said she wanted to make sure I didn't have some sort of dissection! do you think I would be talking to her if I did--- , Then she said, "well to tell you the truth, the radiologist is 72 years old, and he's not very good". Well, I wonder how many people's lives were in HIS hands.

Meanwhile, I pray the back molar hangs in there until this can be done safely. I also pray the infection doesn't spread. I just went to my local dentist, and he said the area isn't inflammed, but said it needs to come out now. I told him I felt like going to another oral surgeon and telling them nothing about my instability---(other then just be careful with my neck)----but that won't do----------It's really pretty terrible in every area of my neck, spine, ect. It's really difficult to describe the instability I have all over my body.

My son gets married in Oxford, Maryland on Sept. 20th. I'm not sure how I'm going to handle all this.

They are going to where her grandparents live------they love it there. They live right on the chesapeake bay, and the reception will be at their home.

I'm not sure how I haven't lost my marbles yet.

Maxine :0)

[Ernie]

Hi Maxine,

I am sorry you had such a bad experience. I guess you still have faith that you will find a good doctor.

I can't wait for you to solve this tooth problem.

[summer]

Maxine,

What a horrible way to treat a patient. I'm sooo glad you stood up to him. It amazes me that he would so arrogantly contradict what 5 (or more) other doctors have told you, and then send you off to have a proceedure that could be dangerous for you.

I hope this can be taken care of somehow before your son's wedding. I'm sure it's taking some of the fun and excitement out of this special occassion with all this hanging over your head. I'm praying for you, and hoping that doctor will not stand in the way of your getting relief from your pain.

Summer

[Maxine]

Thanks again---

I'll say it again, I don't know how I'm hanging on to my marbles.

Maybe the pure comedy of it all. The things I have witnessed in the last 8 years could fill a book. Just think of the comic strip I could come up with. Dumb, and Dumber Docs-------------

How can a man/woman with 8 + years in medical school not understand MRIs, comprehend medical notes from noted specialists, or remember the correct medical terminology on various conditions of the human body? And------------here's the kicker; The docs that DO know what they are doing, and they dare step outside the safety box are considered nuts, and shunned by their colleagues who THINK they know what their doing.

Here's the thing, doctors who are like THIS, do not like someone who comes into their office who has done their homework. They don't like it when you challange them, or might know more then they know about this condition we all have to live with, so naturally we read, we learn, because this is our way of survival.

A truly confident doctor will listen to his patients, and be willing to learn from them. A confident doctor does not need to put on his "almighty doctor" act. This first sign of an incompetent doctor is arrogance. They need this arrogance to cover up their insecurities, and to fill their little cold hearts with the hope that berating their patients will scare them away, so their egos can remain in check, along with their secrets of ignorance.

I just might need to contact this major university hospital and let them know there is a Dud working there, who may possibly put patients lives at risk.

Maxine :0)

[momofsara]

Cudos to you my dear for standing your ground!!!! Seems that neuros are the worst at having that "almighty doctor" persona. We've experienced it also with neuros Sara has seen. Hang in there and best of luck with your molar. Hugs--Susan

[Maxine]

Thanks Sara----

Just a side note--------

Guess what my last name was before I got married? Mohler, pronounced the same way as molar---LOL

Guess what my first married name was? Dessert, pronounced the same way---as the dessert we all eat after dinner on occasion.

I guess I had too much "dessert"------------------

Maxine :0)

[Mary P]

Hi Maxine,

I empathize with you so much and understand your pain. Reading your post made me angry all over again. On July 16 I saw a neorophysiologist, the most arrogant bully I've ever seen in my entire life. You mentioned 'arrogance walking in the door', and that's precisely what we experienced.

I wonder how many people these horrible doctors destroy rather than help. I wonder if they even like their work. I wonder if they like themselves.

I too hope that you get the much-needed help to get your tooth fixed and so get you feeling stronger and better.

Mary F

[summer]

Hi Maxine,

I empathize with you so much and understand your pain. Reading your post made me angry all over again. On July 16 I saw a neorophysiologist, the most arrogant bully I've ever seen in my entire life. You mentioned 'arrogance walking in the door', and that's precisely what we experienced.

I wonder how many people these horrible doctors destroy rather than help. I wonder if they even like their work. I wonder if they like themselves.

I too hope that you get the much-needed help to get your tooth fixed and so get you feeling stronger and better.

Mary F

Mary,

I'm sorry that you also had a recent bad experience. I have sent you a PM, so could you check for it in your new messages?

Summer

[Guest tearose]

Well Maxine Mohler, Dessert, at least you are finding humor is this ordeal!

If this doesn't work out soon, I think a group of us are gonna find where in the world dental heaven hospital is and find the right doctor to pull that tooth out for you!!! I am so frazzled FOR YOU!

Keep pulling yourself up! I am proud of you.

best regards,

tearose

[Maxine]

Thanks Mary,

I just don't know how these docs get away with this-------

This morning I woke up with a cough, and my upper spine near my neck was in pain more then my usual. My husband reached up to try to rub the muscles to see if it would offer some relief. He said my spine was buldging to the right side, and it does do that. I guess this must be the scoliosis doctor McDonnell from NIH was talking about. Every so often I get this, and it's difficult to breathe. We went to a small couples wedding shower for my future daughter in law today, and then to my Dad's for a family get together. I enjoyed the company, but struggled the whole time physically. The instability still doing it's thing----------------

I was so wiped out when I got home, so I took my BP just to see if it might be low. I was sitting, and it was great-----116/77. I thought I have felt this bad, and had decent BP before. then I thought, maybe I should take it standing. I didn't want to because I was that wiped out. I stood up and took it-----it fell to 78/48.

My EDS doc from Cincinnati said he was going to see if he could find something out at the EDNF---(EDS) conference in Huston that may help----------------maybe another doc--- Hopefully someone that knows the seriousness of this.

What is it with these neurologists, and neurosurgeons------------------? (What's up with the "God complex")?

Maxine :0)

[Maxine]

Thanks Tearose---

I'm beyond frustrated-----------------almost nuts--- . Tomorrow, I'm going to pray I hear someting from the EDS doc, but it may be too soon, as I'm sure he just got back from the EDS conference.

It looks like we posted at the same time---lol.

Maxine :0)

[anna]

Hello Maxine,

Just read your post and wondered if you have ever been pointed in the direction of Dr. Bolognese at the Chiari institute, he has a very good knowlage of EDS and Chiari and other brain and spine conditions. (He's a neurosurgen by he way).

Sorry you have had to put up with such an arogent Dr. well done to you for having the strength to stand your ground.

Anna

[stellakitty]

Maxine-

Have any of your docs put you in a collar yet? I wear a Miami J right now but I'm getting a custom one because my neck is too long and skinny for any of the pre made collars to fit... I habve to wear it anytime I am sitting or standing (which isn't often). I'm seeing Dr. Oro right now and it looks like I'm going to be having TCS surgery and then we're planning on going to TCI to have the patch removed and fusion (can't fly right now)... I had my wisdom teeth in feb removed and what the OS did is he put the head down below my heart and he kept my collar on and he tried not to open my jaw too much... That's all I remember (was drugged up).

Good luck... I feel for you. I hate it when my neck subluxes... I wouldn't wish this on anyone else in the world. As fopr docs... I had one oc tell me that my not being able to mobve my right foot was a bad habit.... He then yelled at me in the exam room to wiggle my toes... And told me I wasn't trying hard enough when I couldn't move my toes....

[Maxine]

Thanks Stellakitty, and Anna---

I was told not to wear hard cervical collar too much because it will make my neck muscles atrophy, then there will be nothing to hold my head up, as the EDS is affecting the joints and ligaments.

I went to TCI in 2004, but I can't go to TCI for several reasons. They did do a lot of testing which showed the pannus growth, and the retroflexed odontoid bone----AKA CCI. There wasn't a "traditional chiari", as there was only 1mm herniation, but I do have a small posterior fossa--(skull opening)---referred to as chiari -0- , and congenital cervical spine stenosis. After traction testing was done, the CCI was also diagnosed. My orthopedic surgeon refers to this as CCI also.

I'm sorry you have had to deal with some of the same experiences StellaKitty.

This is such bullroar. What can I do to wake these idiots up----??????????????

I want to thank you all again for your kind words, and SUPPORT--- This is a time when I really need it, and I'm grateful to those who took the time to read my posts.

Maxine :0)