waste of time

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waste of time

Postby laura » Sun Jun 24, 2007 7:30 pm

Well,i went to Pittsburgh last thursday to see Dr. Bejjani. I seen him for about 2 mins. total.
He asked me what symptom bothered me the most? which was hard to answer because my back hurt so bad after riding in the truck for 3 hrs.
I had alot of pressure in my head and some dizziness and not mention the tingling that never stops and now i get these cold sensations in my arms. So anyways i said my back.
He looked at the film with the syrinx and said it was to small to operate and wants to do another MRI in 4 months and see what happens. I asked him if he thought the syrinx was the cause of my symptoms?
He said NO could be MS. He never asked what my symptoms where except for the one question about what bothered me the most?
I think he's thinking MS because my sister has it. and he must of read that off of my papers i had to fill out. and that pretty much raps that up.
I thought he new alot about syrinxes that is why i went to him.
I just don't know what to do now?
Thanks for listening, Laura

Postby angie7 » Sun Jun 24, 2007 9:00 pm

I am sorry that he wasnt more helpful and offered more answers. Sometimes we have to go elsewhere for more help, maybe try another ACM/SM specialist....

I hope that you are able to get answers soon. Trust me I know how frustrating it is not having a doctor listen to you...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
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waste of time

Postby prism » Sun Jun 24, 2007 10:43 pm

Laura, :oops: I'm so sorry. So, so, sorry.
I can identify all too easily. Maybe we could get a thread going on how to screen for the right doctor and what kind of info/questions we should have in hand to avoid some of these experiences?
I know for me I can easily become dangerously depressed from appointments where my need is so great and they really don't help me at All. Feel free to write me if you need more support emotionally. I can't answer your questions about syrinx but I'm good for ups and downs and hugs.
..another day or so and you'll be better able to think the appointment through again.. {{{{{hugs for now}}}}} prism

Postby mac » Mon Jun 25, 2007 12:39 am

Dang it Laura, that was a real disappointment for you and if I'd have been in your situation, I would have cried buckets! In front of the doctor and all the way home! I ought to own stock in Kleenex!

I saw Dr Bejjani on the convention video recently and he seemed so super smart. This is often the problem with these brilliant NSs, they have no bedside manner, no social skills. All they know is to cut and fix things. NSs are notorious for this.

It makes it difficult, often, b/c we have talked our insurance companies into authorizing our visit with such an expert and when it turns out like that, what do we do? I had this happen with the doctor at UCLA, in fact, I was told by my primary that work comp would never send me to TCI b/c they had already sent me to Mecca (meaning the expert at UCLA)...

But, Laura, I had to suck it up and go there on my own. It took me 9 months between the two different appts, but in the end, I got to TCI and got the real story on what was wrong with me and a surgical plan. And miraculously, I got the authorization for my treatment there.

I'm not just trying to send everyone off to TCI, but that is where I went so that is where I have the experience. I do know there are other experts out there. But I cannot vouch for their amount of caring like I can from personal experience with Dr B at TCI. So, that is why I always suggest him.

You old timers out there, is Dr. Bejjani the one we've heard from a couple of other people, that he is lacking in bedside manner? I hate to run down a doctor, I've never done it before here. But when someone drives 3 hours to get to an evaluation appt and only gets 2 minutes, something is very very wrong! There is absolutely no excuse for this!

Laura, as was said here, you will feel better and stronger after you absorb this experience and can move beyond it. And then, you will need to go to another expert. As Angie said, some of us have sure been there. It's not fair and it's not right, but it sure happens.

Keep on talkin' it out with us, we're here to listen. Great offer from prism, she's so wonderful in her offers of support!

mac (PS, prism, I truly like your idea about the thread started on how to get what you want from your doctor. I have lots of ideas from years of experience and I KNOW that there are so many others here who have much to contribute. Let's do it! You start it!)


Postby razzle51 » Mon Jun 25, 2007 3:52 am

I answered your same post on the other thread . Like I said you are paying him and you time is valuable too.
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby WeeLassie » Mon Jun 25, 2007 2:18 pm

This is from the ASAP website. I have highlighted some of the text.

What is syringomyelia?
Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. For reasons that are only now being understood, cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. (Doctors sometimes use other words such as cyst, hydromyelia or syringohydromyelia) This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

(Click on the image to enlarge)
There are two major types of SM. In most cases it is related to a congenital malformation involving the hindbrain (cerebellum) called a Chiari I Malformation, named after the physician who first described it. This malformation occurs during fetal development and is characterized by downward displacement of the lower part of the brain (cerebellar tonsils) beneath the foramen magnum, into the cervical spinal canal. This displacement blocks the normal flow of cerebrospinal fluid. When normal flow is obstructed, a syrinx can then form in the spinal cord. Need more information?
What is Chiari Malformation?
Click here for Printable Version
We have video tapes available for sale

Not all patients with Chiari Malformations will develop a syrinx, however.
SM can also occur as a complication of trauma, meningitis, tumor, arachnoiditis, or a tethered spinal cord. In these cases the syrinx forms in the section of the spinal cord damaged by these conditions. As more people are surviving spinal cord injuries, more cases of post-traumatic SM are being diagnosed as the syrinx can form years after the trauma.
What are the symptoms?

The symptoms of SM are numerous and a person may have various combinations of different symptoms. Symptoms tend to develop slowly, although sudden onset may occur with coughing and straining. Some common symptoms include: loss of sensitivity, especially to hot and cold, muscle weakness and spasticity, motor impairment, loss of bowel and bladder control, as well as osteoporosis and scoliosis. The majority of patients suffer from headaches and chronic pain.

Although Syringomyelia was first described over 400 years ago, very little research was performed and as a result little was known about the disorder. Only recently, with the advent of MRI and the dramatic rise in diagnosed cases, have significant advancements been made. In the past, SM was considered a disorder that always resulted in slow, progressive degeneration. Researchers now believe it is possible that some patients may never progress.

What should be done?

The first step after diagnosis is finding a neurosurgeon who is experienced in the treatment of SM. Finding a specialist is highly recommended. Surgery is the only viable treatment for SM, but not all patients will advance to the stage where surgery is needed. Evaluation of the condition is often difficult because SM can remain stationary for long periods of time, and in some cases progress rapidly.

Treatment is aimed at correcting the condition that allowed the syrinx to form, if possible. In cases involving a Chiari Malformation, the main goal of surgery is to provide more space for the cerebellum at the base of the skull and upper cervical spine. This often results in a flattening or disappearance of the syrinx as the normal flow of cerebrospinal fluid is restored. In some cases it may be necessary to insert a shunt into the cavity, rerouting the cerebrospinal fluid from the spinal cord. A successful surgery will stabilize the condition and perhaps gain a modest improvement in symptoms, but over time surgery is not always successful and multiple surgeries may be necessary.

Since the natural history of SM is poorly understood, a conservative approach may be recommended. When surgery is not yet advised, patients should be carefully monitored by a neurologist or neurosurgeon. Periodic MRI's and physical evaluations should be scheduled at the recommendation of a qualified physician.

Now for my commentary. Sometimes the syrinx is too small to do anything about surgically. The only surgery in a patient lacking ACM is shunt placement for the syrinx and most surgeons shy away from doing this. I can certainly understand an NS not wanting to perform these delicate procedures for a small syrinx as the risks of surgery far outweigh the potential benefit.

As far as Dr. Bejjani's "manner" is concerned, I have found that in order to engage him you must talk as if you know exactly what you are talking about and make eye contact with him. Once he was shaking my hand and I actually held on to his a little longer and kept on speaking to keep his attention. It worked. By the way, to anyone else who is reading these comments about Dr. Bejjani, he is one of the premiere neurosurgeons in this country for SM and ACM. I think the man is a genious and his expertise in this field is undeniable.

Just my two cents.
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Postby petsmom » Mon Jun 25, 2007 6:12 pm

Good reply there WeeLassie. I agree that we patients have to encourage some of these specialist to "slow down" and take a bit more time. I suspect that since they do pretty much know it all they assume we do too or too clueless to understand, why bother.

Many doctors come across bad, no bedside manner. It is very important to establish some rapport with the assitant or his head nurse. The person you are most likely to be able to reach by phone, helps schedule testings, etc. Normally, the specialist are not the ones that call back. You talk to the doctor's asst. and they relay and get back to patient. This can be a valuable "life-line" to have. Being on good terms with the staff, even the one who answers his calls.

I learned that the hard way. I had a great pcp but hit it off bad with his nurse and never got my calls for help returned. Things got lost out of my files, etc.?? So make nice with all the staff even if doc has no real personality!!

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I am not my disorder. It does not define me as a Person.
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Postby kathy_h_87120 » Mon Jun 25, 2007 6:58 pm

I learned that the hard way. I had a great pcp but hit it off bad with his nurse and never got my calls for help returned. Things got lost out of my files, etc.?? So make nice with all the staff even if doc has no real personality!!

I have the same problem. Only I'm not sure why. My PCP is absolutely great and he constantly says call me if you have any problems etc. But I can't get info to him. I've tried calling and leaving a message to call me back, I've tried telling the nurse the problem, I've even taken a letter over there so he could read the info at his lesure. He never gets my messages and the letter wasn't given to him for 2 days. When I asked about it the front desk said I left it off after he had left for the day. Strange I dropped it off a 8:30 am. He sure must leave early. That made me mad and I did complain because the letter was letting him know that I needed a refill of a med that could not be called in but that I would have to pick up the script at his office. It also had a lot of info from a doctors visit he had refered me to and I knew he would not have gotten the report yet but felt he needed to know in order to feel safe in giving me the script. Oh well. Guess I never have good repore with his staff. too bad because I almost left him due to his staff. still may.
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Postby laura » Mon Jun 25, 2007 7:28 pm

Thanks everyone for the support. I really appreciate it.
To make something perfectly clear. I wasn't judging Dr.bejjani expertise as a surgeon. after finding out about him.
I did alot of research on him and decided that is who i wanted to go to. Because he is one of the best neurosureons.
I understand a syrinx being to small to do anything about. i'm having alot of symtoms for it being small. Also where did it come from?
Thought he would of liked to find that out?
As it says on the ASAP website - a wide variety of symptoms can occur,depending upon size and location of syrinx.
I'm not going to hold his hand a little longer to keep his attention. But, thanks for the advice.

Postby socialdkitty » Mon Jun 25, 2007 10:39 pm

Laura, where are you from? I'm about 4 hours from Pittsburgh (in West Virginia) so just wondered!
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Postby DavidinCinci » Tue Jun 26, 2007 1:00 am

what part of West Virginia do live in? is a Goooo Mountaineers in order?
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Postby socialdkitty » Tue Jun 26, 2007 7:15 am

No, I grew up in Sutton and now live in Charleston although I probably spend more time in Sutton than Charleston. I went to WVU for a year though.
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