My neurosurgeon

General
1

...is obviously not the right doctor for me.

I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!

She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!

Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused the fat, not the other way around.)

She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.

My husband wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.

God, I'm so disappointed. I thought things were finally starting to look up.

2

I haven't cancelled the appointment with the neurologist on the 31st, so I'll probably go to that and see what he says. There are other neurosurgeons but the wait list is so long, and it's been almost two months already since I've been out of work. The stress might just be the thing that kills me!

Emmaline said:

Katrina, that is so disappointing to hear. Ugh...I'm sorry for the way you must be feeling.

Is there someone else in your area that you could get a second opinion? Was this the same NS but they just moved up the appt?

I feel so bad for you....hugs...

3

I have no problem admitting I'm overweight. I am well aware of my body's fluff content! I've always been bigger, but when I got sick and couldn't move as much as before, I gained weight. The fat is because of the disease, not the other way around! Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray? We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely (have it as a treat every so often). I have been trying so hard to lose weight because we were talking about getting pregnant and I wanted to be as healthy as possible for myself and my baby. Now I see that slipping away... There are so many things I'm losing because of how crappy I feel. I don't know how I'm going to make it through this.

Beeba said:

That is terrible that you were made to feel so awful. Will she be paying for the CINE if insurance declines it? Very honestly that is your problem not hers she should have ordered it and let thie chips fall. As for your being fluffy that should definitely be discussed,it does bring on other risks. That said though - this should have been done in a tactful and thoughtful way. This is the only form of prejudice that is still socially acceptable. It is wrong. If you were a smoker and you had lung cancer would they just say well it is your own fault no treatment? No they have an obligation to not let their personal biases cloud there medical judgement.
4

I'm sorry your appointment went so poorly. This lady sounds awful! :( A lot of doctors are really hung up on weight. I'm not even that overweight, just a bit chubby, but to hear my PCP talk you'd think I was 800 lbs. Every visit was she was yelling about cardio, cardio, cardio. I finally pointed out to her that the reason I was there all the time was because I was sick all the time. I finally melted down and asked how exactly was I supposed to be exercising when I could barely get out of bed for work??? In addition to chiari I have chronic mono (probably because the pain and poor sleep from chiari keeps my immune system down).

Keep trying to get on waiting lists with new doctors. In the meantime give this lady another call and tell her that you are willing to risk the insurance not paying for the CINE...for the record mine paid with no prior authorization even. Paying for the test should be your problem to deal with, it's not coming out of her pocket. If you have a good PCP you may even be able to get them to order it.

5

Be careful on offering to pay for the MRI without coverage! One of my normal MRI's was priced at over $7000!!! I had four of them (brain, cervical, thoracic and lumbar), and was looking at a bill of over $30,000! It WAS covered, it turned out okay, I did get it paid for, but it took a lot of time on the phone.

Ask the price before you ask for the test!

(I never earned more per hour than fixing that bill. Heck, even if I spent 10 hours on the phone resolving it, I was effectively earning over $3000 per hour. I found it funny, despite the frustration.)

6

WOW!! I think that is the worst appt. I have heard yet. I personally think you should start looking for someone else, so that you are comfortable in knowing that they have your BEST interest at heart. There is no use to keep going to that doctor if they already have preconceived notions about what is going on. These doctors are a mess. I went through 3 or 4 myself before finding someone that is helpful. I apologize you had to go through that.

7

Katrina,

I am so sorry you had to go through that. That is abuse and you shouldn't open yourself up to more abuse by going back. It is my experience that these situations don't get better. How dare she treat you that way? talk about kicking someone when they are down. It's not right. You deserve a doctor that will listen to you and HELP YOU. I completely agree with Beeba. I would make appointments and send films to as many doctors as you can and as far away as you are comfortable traveling. Then I would send a letter and describe your situationa and what you're going through. I am a firm believer that the sqeaky wheel gets the grease. Maybe a few of them will push your appointments up. So many of us have gained weight from inactivity that this condition FORCES upon us. I always think when people treat us like this. Who would want to live like this? Who would settle for this if we didn't have to? There are great doctors out there and it may take a few more horrible appointments (or maybe not) and some time but they are totally worth it. We are all here for you. Sending you hugs and prayers.

Wendy

8

Katrina, I meant to reply yesterday. I am overweight and luckily I haven't had a Dr treat me like that. I'm so sorry you had to endure this yesterday.

Is there any way your PCP could order the CINE MRI?

Thinking of you!

Diana

9

I really appreciate everyone's kind words. You probably all feel the same - it's so good to have a place to go when you feel no one understands why you're so frustrated or sad or sick. I went to my PCP today... I didn't bash the neurosurgeon, but I did tell Dr. O exactly what the NS said and that I disagree with her because of specific reasons that I outlined for her. Out of professional courtesy she made an attempt at defending the NS... But eventually she said, "No, I don't think you've got heart disease, and I don't think your symptoms are because of your weight." We have decided to follow through with the other appointments the NS made (for a neck MRI, doppler to check for blood clots in my legs, ophthalmologist, and cardiologist) so that we can rule out everything else. Then I can shove the results in that neurosurgeon's face and say, "Now will you believe me?!" :P

As the anger fades, it's replaced by this... I don't know. Hopeless feeling, I guess. I don't want to feel like this anymore. I miss my old life. I miss preparing for teaching childbirth classes. I miss volunteering at the drug/alcohol treatment center. I even miss my crappy call center job, even though I was planning on leaving after graduating college. (ONE MORE QUARTER!! :( ) I know everyone has issues finding the right doctor - someone who will take them seriously. I don't know if I have the energy to advocate for myself like I should.

From what I have heard, there isn't a place in Spokane that will do a CINE MRI. I need to make some calls, though. The closest would probably be Seattle - a five+ hour drive. Thinking about it make me even more tired.

10

I know how you feel. It took me years to find a sympathetic and knowledgeable NS. If this doesnt work out, go to someone who is a Chiari specialist or that has Chiari as a special interest. Most NS s dont know enough about Chiari to make a decent assessment, but they would never admit that, so they blather and make us feel like dopes. Best of Luck to you!!

BTW, I lost 60 ponds and i do feel slimmer, but the Chiari symptoms remain, alas.

11

Hi Katrina,

I haven't posted for awhile and your issues strike many hot buttons for me. First, I was born in Spokane also. You sorta look like my mom in the face. They say Chiari runs in families. Perhaps we are related or not? :) Anyway, I've been to two NL and one NS. The have done MRI's of brain, cervical, thoracic and lumbar. They also did a CINE mri. I've had nerve conduction studies and in the end, the NS is dumbfounded and is sending me to a rheumatologist because I tested postive on a Rheumatoid test. He felt my CINE looked ok, but I saw the images and the quality was poor to say the least. I also know they take the CINE in different positions, because if you are lying down it the pressure and gravity force may be different than when you are upright. Anyway, it sucks.

You can look at my post to get my background. I have a 7mm Chiari, but he thinks its minimal. I have degenerative disc disease in my cervical and lumbar areas of my spine. I was also diax with Fibromyalgia in 2008 a couple months after radiation treatment (and 2 surgeries) for thyroid cancer.

And still, they don't take Chiari seriously. I have numbness, tingling, migraines, dizziness, tinnitus, blurry vision, balance issues, and the list goes on, not to mention weight gain when I eat pretty healthy.

Back to you - I am concerned about the double vision and grayed out vision. Have you researched MS. I know it's yet another scary thought, but Optic Neuritis is a big tell tail sign of MS and many of the symptoms Chiari presents is also present in MS.

Usually plaques or white matter spots (lesions) show up on brain MRI's in MS, however sometimes it can show up in the spinal column. Anyway, the NS or NL should think about the option with the vision problem.

Also, if you go to the Chiari Institute site there are many good videos. A bean shaped pituitary can cause problems.

Also, have your antibodies checked (thyroid) TPO and tpAB because your thyroid function can be normal, but if you have antibodies it causes Hashimotos - an autoimmune disease that causes either Hyperthyroid or Hypothyroid symptoms off and on. Symptoms - tiredness, weight gain, foggy brain, heart palpitations an the list goes on. I am not a doctor, but I try to inform myself. It took time and many doctors before someone took my thyroid symptoms seriously and I fear it's the same with Chiari. Good luck and my prayers are with you! Maria

12

My mom always told me there were two types of fools. The educated fool that believe he/she can say anything because of their education and the stupid fool. The stupid fool says things because they don't know when to shut up. Your neurosurgeon is special because he's both types of fools. I'm sorry that this happened to you. Please stay strong and consider calling other neurosurgeons. Denise

13

Hi Denise,

Sorry for not responding sooner. I saw Dr. Dan Heffez of the Chiari Inst. here in Milwaukee, WI. He was wonderful as far as understanding my pain, symptoms and explained a lot of other things away for me that I never had to spell out for him.

He is a neuro/spin surgeon. I would suggest finding people that want to work with you instead of against you. You can always contact the Chiai Institute directly. You mentioned that insurance might be an issue. See what physicians are covered by your insurance that are Neuro/Spine Surgeons/Physicians and go from there.

Hope that helps and keep me up to date. I will be praying for you!

Tina

14

Dear Chiari friend.

My heart goes out to you this morning. First, you need a big hug. I am glad that you are here in this support group so you can come to a safe place to vent. This is very important. Keep sharing because of the wonderful and loving support that you will continue to receive here. I share your frustrations, because I had to go to several doctors and go through alot over the years until I was actually becoming bedridden most of the time because of the pain. I can always share more later, but I will continue to pray for you this morning. Do something good for yourself today.

(You will probably need to go to a Chiari specialist eventually, like I did, and that everyone can benefit from to get the proper medical care that everyone needs and deserves with this difficult condition.) You are not alone. Love and prayers, Mary Lou