Results from the neurosurgeon's appt. yesterday, 9/29/08

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Thought I might go ahead and start a new thread. I would have reported last night but I just wasn't in the mood. I got at the doctor's office at 11:30 ( appt. was for 11:40) and they put me back in the room at 12:00 and I didn't see the PA until 1:30. Needless to say I was already discouraged.

I will try and condense this report if I can. The PA I saw is the same one that I had always seen before my back surgery and have for at least 3 years. When she came in she immediately ask what the problem was and she got on her computer (heaven forbid they use actual paper charts any more). I started telling her about the bladder problem and the back pain that I have been having and also the swelling in my ankles and legs. During all this time I mention several times about "the surgery". I had already given her the CD for the MRI and the written report that was done at my family physician's center. I explained to her that my whole left side is a problem. At one time I stood up and she asked what I was doing and I told her that I was having severe pain at that particular time and I wanted to show her exactly how the pain traveled from my groin down to my ankle.

Now she starts the actual exam and my left side does not cooperate at all and she said "When did this all start????" She couldn't even get a reflex in my left knee and when I try and raise my left leg it shakes and I do not have any strength at all in that leg and my right leg is normal. I told her I thought I was getting better after the surgery but then when I had the major bladder problem over the Labor Day weekend everything has gotten worse. She then has me do the walk which I can't do and she seems to be very concerned. We then sit down and she asked me if I had read the MRI report and what I thought about it. I told her I really didn't understand the comment about Post surgical changes and she said that she didn't see anything wrong with the report. I said " Well, Pam, (another PA) had called me and stated that it showed a bulge at the L5/S1 and I needed to get into their office." She just shrugged her shoulder like well so!!! She kept looking at more pages in the computer and then said "Oh NO". I asked why she said that and she said "You had surgery this year!!!!" She said that does make this report bad. I thought I could strangle her. How did she not know my history before coming in to exam me???? I was so frustrated. She then proceeded to tell me that a MRI is not to be done until a YEAR has past from the surgery and now the only thing to do is a myelogram. I told her that my family physician's office called their office to ask what they wanted done since they could not see me during the Labor Day weekend. I don't know where the communication failed but I am so upset.

She never mentioned anything about the bladder problems and said that neurological problems do not cause swelling. She said you definitely have something going on but nothing they can do until the myelogram is done. I told her if the bladder problem is not coming from my spine then I need to see a Urologist but I feel like it is coming from the spine since I have the urge to urinate when I stand up but then when I sit down I don't have the urge anymore.

I am so MAD and don't know what to do at this point. I know it is hard to get another doctor to take over after you have had surgery by someone else. I actually like my doctor but you always see the PA's and not the doctor unless surgery is scheduled or it is the first follow up after surgery. Is everyone else done like this or do you actually see the surgeon? My sister told me not to make any rash decisions at this time because I am so upset so I will take a few days and try to figure out what is best. I am thinking about going to my family physician and talk to him and maybe he can call and talk to the surgeon.

Well this was longer then I wanted but it is still condensed down. Thanks for all of your support and I know you probably think why isn't she doing this or that but I am confused because the doctor is highly skilled and recommended by many but it is just getting through to him.

I will keep you all informed and thanks for being here for me.

Linda:angel:
 
Hi Linda,

I want to read through your post more carefully but I noticed you were online and wanted to quickly post something back to you....to say "Damn them!" This is an amazing story. I think your idea to call your doc and talk to him about this is a good idea. I would start there.

I am so sorry you are having all this trouble. I'll post more soon. Just wanted to say HI and send you some (((((HUGS))))).

xx M:(M
 
I am so sorry linda i know how it is i am trying to get this answered as well. Soon one of us will for both of us i guess. No i do not get to see the actual surgeon that did the surgery i always see residents or students. I have an appointment in deceraber for the blood in urine and i dont like that doctor but i know i need to go and i am going to ask for referral to GYN clinic cause i urinate while sitting and then if i tilt more comes out. I dont want to say alot on your thread but i want to let you know i am so sorry and i know time is coming for you to know the answers.
 
Just to make you all jealous...I guess I'm very lucky. I see my surgeon every time and recently, that's been twice per month!! In your case, Linda, it sounRAB like the PAs are making all the decisions. I thought the PA does the initial talk with the patient, maybe makes an initial decision for treatment, but then the doc comes in, sees the patient and makes the decision on treatment.

My surgeon has one PT that assists him in surgery and another that does the follow-up appointments after surgery. I saw her at my 6 week check-up, but have never seen her since. I had my fusion almost 9 months ago and have probably met with my surgeon 20 times. Right now, I've been seeing him about 3 times per month.

Anyway, that info the PA gave you about MRIs is crazy. I had a MRI 3 weeks after my fusion because I developed an intense, new pain while still in the hospital. The surgeon ordered both x-rays and MRI. The technician did say that they didn't usually do MRIs so early because sometimes there is still too much swelling to be able to see much..but my surgeon was looking for something specific and he was able to see that....Then I had another MRI about 2 weeks ago (because I still have that same pain:().

I have purchased probably about 20 books on back pain and spinal surgeries and every single book says that most back problems are not emergencies EXCEPT when there is a loss of bladder control and there is genital or rectal nurabness that is called saddle anesthesia...both symptoms of cauda equina syndrome. If that occurs all these books say to contract your doctor immediately or go to the ER. I wonder why they bother saying that if your doctor is simply going to avoid the information???

It sounRAB like this medical practice is simply to busy to take care of their patients. I'd be looking for someone else. I bet if you went to an ER and told them your symptoms, particularly with a towel wrapped between your legs, you would be seen right away an they wouldn't ignore this symptom. If they did and you developed permanet damage, they KNOW they could be sued.

I'm sorry to vent, but I think the way you are being ignored is just simply BREATH-TAKING!!!!!

Please call your family doctor, tell him how bad you are and ask him what to do. I really can't believe that having a myelogram is the appropriate way to figure out what is wrong at this point. It is an invasive procedure -- one that some doctors, rightly or wrongly, speculate is responsible for some people developing arachnoiditis. There has to be another way to find out what's going on...

I don't mean to keep bringing this up, but doesn't it strike you that just about everything pertaining to this surgery has had problems? Sometimes we let the fact that we like our doctor cloud our judgment. It doesn't sound like anyone in that office is paying any attention to YOU.

I know you're upset enough without me further upsetting you. That is not my intention. I just can't believe what I am hearing and I feel so sorry for what you are enduring.

I pray your family doctor will be able to think of a way to help you.

Hang in there, my friend. I am thinking of you.

xx M:wave:M
 
Thank you all dear frienRAB for just understanding. Emily I was thinking about trying to get through to his nurse and talk to her because she would be the best contact with him. Okay MOM you did make me jealous:D but I am so glad that you do get such personal attention. tmv you also described a problem that I have with my bladder also. What is really strange is yesterday my bladder was not as bad and today the leg swelling is better. How come I can see the connection but they can't? We are suppose to go on vacation next week for four days but I am not sure if I am going to feel up to it. My sciatic is really acting up. Well everyone take care and when I decide what I am going to do I will let everyone know.

Love Ya'll
Linda:angel:
 
Hi Linda,
I'm so sorry this appointment didn't go better. Are you able to call and make an appointment specifically with the surgeon?

I hope you get some satisfaction from your family doctor. If it takes seeing a urologist to find the source of your bladder problems, DO IT! The longer you go, the harder it may be to remedy. Your family doctor can be the overseer of all your medical care. He may not be the expert in a particular area, but he's probably the only one who has the whole, larger picture.

I was so sad to read this. I'm praying for you, dear sister, and sending you gentle cyberhugs. ((((((((((linda))))))))))

Emily
 
Yes please keep us informed. You know i have good days also. and the past few have been good days. I am jealous mom but i did see the surgeon everyt ime i went the first time in 2002. The only time i saw the nurse was to get the staples out and the saw the doctor after i had the x-rays and even if it was only for 10 minutes he would look at the films with me right there.

I hope you have a good time on your vacation and i want to wish everyone else a good and as pain free as possible weekend i have twins in homecoming parade and then the dance for the 14 year old tonight so i will be picture happy for sure!

Love and Hugs, Tina
 
nanmaz I wish I knew why my legs are swelling. Yes I did have ALIF in January of this year and then they completed the fusion with doing a PLIF in March. I had really bad swelling at the beginning but that was due to some medication they had me on but this swelling no one can explain. I have been having problems with my bladder since the surgery and when the bladder acts up then the leg swelling starts up again. I never had leg swelling before my back surgery.

Linda:angel:
 
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