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briarrose
07-26-2005, 11:09 AM
Today I had my follow up appointment at the Rothman Institute. I had an MRI done on July 8 and today I found out the results from it. First, I didn't know I was supposed to bring the films with me (I had an MRI before and wasn't told to do so) so the nurse practitioner flipped out on me. Then she was mad that I didn't bring my x-rays from 2 years ago (I tried, but the Dr's office wouldn't let me take them). She stormed out of the room. I then heard my Dr. yell, "What I am supposed to do if she didn't bring what she was supposed to bring?" I was really upset at this point and was about ready to leave, but decided not to.

After about 20 minutes, the Dr. comes in looking very frustrated. He shoved a stool to the other side of the room and kept banging it around. He wasn't very nice to me and said he couldn't do much without the films or previous x-rays. He then said that after calling the place I had my MRI 5 times he finally got the results. He said there was a very bright white spot on my spinal cord so I have to go to a neurosurgeon. I asked him if it was from the scoliosis and he said probably not. He didn't seem concerned at all about my pain (this is the 4th time I've basically been thrown aside by doctor's regarding my pain). He was going to give me muscle relaxants but then remembered I had asthma so that was out of the question.

After he left the room, I heard him and the mean nurse talking about me. The Dr. said he thought I must have been dropped on my head as a child. I left the office holding back tears.

When I got home, my husband called them and said we weren't going to pay for that visit because of how poorly I was treated. They made me feel like a complete moron. Maybe I am stupid for not getting my films. I seriously wasn't aware that they would need them.

Oh well. It's all over now. I won't be going back there again. I don't know what to do. I feel like giving up but this pain is awful. I had to get my spinal cord checked out. Maybe that's causing the pain.

Sorry to complain so much. It was just not what I was expecting.

Oh and the thing on my spinal cord, my doctor referred to it as a cervical syrinx. Does anyone know anything about this?

Thanks!

Michelle

sins
07-26-2005, 12:10 PM
What a truly awful appointment.I hope they had the good grace to offer an apology to your husband for the way they dealt with you.
A syrinx is a tiny sac of fluid(benign) on the cord.A neurosurgeon can probably drain it for you.It often causes scoliosis and hopefully if successfully treated, will mean your scoliosis won't progress.
I hope you feel better after that awful experience.
Sins

Theresa
07-26-2005, 12:43 PM
Michelle, NO ONE SHOULD BE TREATED LIKE THAT! Sounds as if your doctor and nurse was throwing a childish temper tantrum. I hope you find a much better doctor than him. I guess he forgot about his oath and having compassion! Try to shake it off and move on to someone better. I don't think that I would want someone treating me with a temper like that!

briarrose
07-26-2005, 01:32 PM
Thank you so much, sins and Theresa, for your encouraging words. I feel much better now.

Does draining a syrinx require surgery? If so, would it be outpatient surgery? My curve is 37 degrees. Hopefully it won't get any worse if everything goes ok.

Thanks again!

Michelle

csc
07-26-2005, 01:34 PM
So sorry to hear about your awful doctor visit. Those people should not be practicing medicine - so little compassion and empathy. On my last visit I was told very clearly to bring my latest MRI- to hand carry it. It is so obvious to me that this was not communicated to you.
Kudos to your husband for refusing to pay!
Take care and push it aside to find a doctor/staff who do not display such immature behavior.
CSC

Gail
07-26-2005, 07:24 PM
What a jerk! Who was this doctor and where is he located?

Please mark this doctor off your list and get a second opinion. I am so sorry you were treated like this...trust me...this is not an acceptable behavior and there are plenty of professional specialist that will treat you special! Best wishes in your search!

Kindest Regards,
Gail

briarrose
07-26-2005, 07:36 PM
Thank you all for your kind words! The doctor I went to see was Dr. Broyer at the Rothman Institute in King of Prussia, Pennsylvania.

Rebecca F.
08-24-2005, 10:49 PM
I have just joined this site--I'm 40 years old and I have a 25/35 or more curve who never experienced a lot of back pain until just recently. I know that your message has been posted for a month, but I wanted to reply.

Welcome to the club. For the last twenty years I have been told by various doctors that my scoliosis does not cause pain. Some have even prescribed antidepresents to change my attitude. It is important to not be seen by a general Othopedic doctor. You must be seen by an adult scoliosis doctor who understands maturing adults with scoliosis. Also, most internal medicine doctors are more patient with clients with pain and will treat the pain withe the respect that it deserves than a general orthopedic doctor. And then there are the insensitive doctors who tell stupid jokes, flirt with you and are preoccupied with rushing to a golf game while you're trying to explain that your muscle spasms are so painful that you can't stand for any length of time and you can't remember the last time you felt like you old self.

I usually fire my problem doctors by not returning. My goal is to fire one of the bad doctors in person some day--I just have to get the nerve. Sometimes I am so shocked at a doctor's attitude that I'm speechless until I leave the office. The next time you are treated so rudely do what I have done, tell the doctor that he lacks the knowledge to treat a patient with scoliosis and file a complaint.

People with scoliosis have all of the back problems that non-scoliosis folks have and more like muscle spasms, ruptured discs, tingling all over, headaches, depression from pain, posture, missing out on activities, self-image and more. Your MRI showed a condition common in people with scoliosis related back problems.

I will give you the best bit of information I have received from an Internal Medicine doctor. Anxiety and Scoliosis don't mix. If you are experiencing a great worry or trauma you must do everything possible to calm yourself or the spasms will run wild. The anxiety will make your shoulders tense which in turn will require that other muscles in your back pick of the slack when you lift your arms etc. and the spasms will begin and radiate to other areas of your body. Do everything to relax with yoga, exercise, etc. and resting for at least 9 hours per nignt.

Take care of yourself. Try to stay calm when in the presence of an insensitive doctor.

briarrose
08-25-2005, 12:12 PM
Thanks for that post Rebecca. I got a lot from it. My husband and my mom called the manager at the Rothman Institute and she told them that my doctor wasn't going to get out of this one. That made me feel better. I guess he's been rude to people before.

Recently I went to a neurosurgeon to have my syrinx checked out. He said he didn't think it was a syrinx. He thought it was just how my spinal cord is and even if it was a syrinx, it was so small that it wouldn't cause any pain. I was glad to hear it wasn't anything serious, but I was hoping that the syrinx was the cause of my pain and that it could be taken care of. Oh well. The neurosurgeon told me I need to see a neurologist (funny how I thought they were the same thing) for my arm numbness and tingling in my back and shoulder. I'm still not sure if I will do that. I've seen a neurologist before for migraines. I told him I thought the migraines were from scoliosis. He said that was nonsense. I feel like giving up for now. The neurosurgeon did say I need to be checked once a year to watch the curve. When I stood up he said wow. He thought I was balanced really, really well for having a 37 degree curve. That made me feel better.

Also, when the doctor was looking at my MRI, he noticed that there is no curve in my neck. It's completely straight. It's supposed to curve out a little. He wasn't sure what caused it. He thought it may have been me trying to hold myself upright and it caused my neck to straighten. Would a straight neck cause neck and back pain? Can anything be done about that?

Thanks again. Good luck with your doctors!

sweetness514
08-25-2005, 02:12 PM
Neck pains and problems with disks, pinch nerves, etc in that area are very common if one has scoliosis. As a result, migraines and headaches can occur. Funny how some ortho's opinions differ from one to the next. I had terrible neck/shoulder problems before I had the surgery, and still have my biggest pains there after the surgery. Scoliosis either starts there or the fact that the back curves, it causes that area to have stress. Unfortunately, according to some orthos scoliosis barely causes any pain at any place or on the contrary for others it's the cause of all pains, wich isn't always the case.

trinainmanila
07-04-2006, 08:14 AM
My mother and I went to this high and mighty orthopedic surgeon here in Manila (Philippines) who not only treated us, his patients, like morons, but also heaped aspersions on the other doctors we had previously seen. He might have had the right to a different opinion, but we didn't exactly go to his clinic on bended knees to beg his ministrations and suffer his inflated ego. We cut the "consultation" short and never came back.

Edit (20009):
Eventually, we found an excellent and very kind doctor in the person of Dr. Wang of Manila Doctors Hospital. :)

Cakedec
07-05-2006, 05:31 PM
Briarrose,

I also have a straight neck with my double scoliosis. My chiropractor said that it is called a Military Neck. I also had migraines and muscle spasms that would lock my neck up so that it was turned to the side.

I finally got relief by going to a Cervical Specific Chiropractor. General ones will just hurt your neck further by jerking it too hard. The cervical specific one takes x-rays and examines you and decides exactly which vertebrae are out of adjustment and only adjusts those. This is also called "Cranio-Sacral therapy" if you find someone who does this, it is helpful. I was disabled for over a year with daily migraines until this dr. started treating me.

There is a website that you can go on to find a dr. in your area but I don't have it right now but will private message it to you when I find it.

THis will not improve your scoliosis but not having migraines sure makes things a lot easier to bear! Good luck in your search for treatment.

Deb

briarrose
07-06-2006, 10:49 AM
Thanks for all the info Deb. I really appreciate it!

dawney
07-06-2006, 12:27 PM
Sorry about the bad experience that you had at Rothman. I do not see that doctor listed so maybe he is no longer there. I have been to the Rothman Institute to see Dr Anderson. Everyone there has been fantastic, other than sometimes having to wait a long time. I have4 scheduled surgery for 9/6 and 9/8.
Dawn

lrmb
07-14-2006, 07:39 PM
Dear Briarrose,

I was so sorry to read you post when I got back on the site after a while. It is SO difficult to deal with these people - so often they are wrapped up in their own little worlds and can't seem to find it in themselves to understand the patient's situation. I'm glad you called the manager at the Institute and that it sounds like something was done.

I just wanted to add my sympathies to the others and say that I completely know where you're coming from regarding people not paying attention to your pain. As soon as the doctors realise I have scoliosis, they immediately focus on the surgical options for that and seem to find it hard to take the pain issue seriously.

I hope that the support from this site will help in some way! Many thoughts are with you!! Laura

briarrose
07-25-2006, 08:54 AM
Thank you all for your comments and I hope you are able to find good doctors. I did finally find one. He's so nice and wants to listen. Though he did say he can't really do anything for my pain. He thinks I'll need surgery in a few years since my spine is moving about 3 degrees per year. It's 44 degrees now.

Dawney-I'm really glad you had a good experience at Rothman. I've been following your posts. Are you going to the central Philly office? Good luck with your surgery!

dawney
07-25-2006, 12:52 PM
I am going to the office in Northeast Philly and I am having my surgery at the Jefferson. I am only five weeks out. It is going by so fast.

lelc2002@yahoo
07-25-2006, 02:32 PM
wait till the last 2 weeks.....it flies by & you wish it would'nt.....(in a way) :eek: surgery aug 1st....