surgeon told me i am not a candidate for surgery

[1periodfarts]

i'd say my symptoms started about 15 years ago, but only in the last year have they gotten really bad; i have not had a day where i've felt even close to good in 13 months.  an mri report suggested chiari malformation, a small one, and my gp agreed to send me to a chiari specialist at weill cornell in new york.  he was a lovely man, spent loads of times with me, even comforted me when i started to cry but his is what he told me:  he wishes i'd come to him 20 years ago because he could have stopped the symptoms from progressing, but now at age 56 with such just a 4 mm he'd not recommend surgery because it probably would only stop progression not fix the problems i am having and that it is a big surgery and would have a large chance of not making things any better or could actually make them worse.  he felt he should consult with a neurologist i've seen who is well regarded here in nyc and work with her to find a mix of medicines and "treatments" that would make me more comfortable.  further, he told me all the things i'm doing:  two private pilates sessions a week which are really much more like physical therapy than any physical therapy i've done, acupuncture, massage, tens unit, and ultrasound (i have a pro unit at home) are really all that can be done.  

ok great.  so last night, i had an amazing trigger point acupuncture appointment.  she worked on the trigger points in my shoulders and right arm that have been causing so much pain (the doctor said they are most likely being caused by the chiari) and my arm felt better than it has in months.  and then i came home from an evening out with my husband and had the worst night i've had in months. rocking dizziness that felt a moment away from turning into unstoppable vertigo, and the sensation that the back of my brain and the top of my spine were bubbling and boiling and shaking inside. I've only had a few nights like this, but they always make me feel like i am having a break with reality and am one step away from losing my mind and ending up in a mental institution  i know  i took my usual 2 melatonin and .25mg of konopin and prayed i'd fall asleep.  this morning is much better, but there is still a bit of "i'm on a boat" type rocking.

so here's my question:  for those of you who've bedd advised against surgery or have chosen to wait, what works for you when you are very symptomatic?  what drugs help?  (they've tried antidepressants but i'd rather be dizzy than how fat they instantly made me)  what alternative modalities work?

i have great insurance and am in a position to pay for non covered treatments, but i am looking for ideas.  i'm thinking of a salt float tank as i hear that takes the pressure off your spine and relaxes you.  any other thoughts?

[1periodfarts]

I have sent the stuff to long island, but i, by chance googled the doc you recommended and he is currently involved in a very large and public lawsuit that sound ugly.  yikes.  

[1periodfarts]

i again want to thank you.  after my appointment with the ns, i made an appointment with the neurologist he promised to call to discuss my case with confirming with them they should be expecting a call for the ns.  he never called and after three calls to the neurologist, they couldn't, didn't or didn't want to follow up.  so now, i've wasted a whole month.  luckily, i recently met a woman who runs a business helping match patients with amazing doctors. we share a pilates instructor and she'd heard some of the details of my medical issues (i also have mgus, another friggin' rare disease with a possibly horrible end.) and reached out to me.  she is now onboard and searching for proper care for me.  sadly, it seems i can't do it on my own--been searching nearly flu time for months and ended up with doctors that don't even do what they say.

a funny but not so funny ending:  i saw my gp this week who told me she isn't smart enough to help me figure this out (nice) but congratulated me on being ok.  "what,"  i said, and then she read to me the notes the ns had put in my charge:  patient has minimal herniation and i don't think this is causing her symptoms.  this is after he told me (in front of my husband) he'd have done surgery on me if i'd come in years earlier.

i am beginning to hate doctors.  and surgeons.  uggh.

[lasel22]

I know what you mean by hating doctors. I have very little faith in them.  Although once in a while I do come across one that is honest and tries and will just admit he "doesn't know" rather than accuse me of being mental.

I had requested the surgeons notes at weil cornell but he never sent them to me. I have no idea what my primary received from him, but my primary was pretty convinced my symptoms were anxiety. He wasn't the only doctor to think that. Many so called chiari specialist in the tri state area all thought my chiari wasn't the problem.  

If you sent your images to Dr. B at NSPC and it's chiari he will find it. It may take some time for him to get around to looking at your images but you'll hear back eventually.

[1periodfarts]

wow, thanks for that advice.  my pcp had also told me they just look for blooming, but told me they didn't have the proper equipment for a test.  who knew i could just let the liquid drip on toilet paper?

really welcome advice since i am now being considered a crazy person by nearly all the doctors i see.  it is frustrating; i am well educated, smart, and high performing yet suddenly i can see it in their eyes how crazy they think i am.  and i got called a hypochondriac three times this week.

ughh.

[gjjl]

Don't ever let a doctor make you feel like a crazy person. Your symptoms are very real and very debilitating. I am so sorry you are going through all this. Definitely get a second opinion from another ns. Like Selma said have them test for any related conditions. Try to stay strong. There are so many doctors out there who claim they know about Chiari but unfortunately that is just not true. Best wishes!!! Unfortunately I don't have advice on alternative treatments instead of surgery, I have had 2 but I have syringmelia so it was a must. I also want you to know that it doesn't matter if you have 4mm or 12mm, a person with 4mm can have horrible symptoms and one with 12 may not have any at all and vice versa. Keep your spirit up and remember we are all here to support you!!

[KerriC1]

I've been dealing with fluid coming out of my left nostril for a few months now. It would appear that it's spinal fluid , although hadn't been officially tested. Selma gives a good tip on how to check this by letting it drip onto a tissue and let it dry. If it has a halo effect then it's spinal fluid. I also read that  csf dries soft and normal mucus secretions dries stiff.  Also have this ongoing helicopter noise in my left ear, and I feel they are related. Seems that when I get my heart rate up a bit the fluid is more prevalent. I'm close to 8 months post op and recently switched ns's. I called 2 days ago about this very issue and haven't gotten a call back just yet. I wish you lots of luck in finding a dr that will take you seriously. I know all to well the feeling of being let down by the medical profession.  Keep us posted on your outcome!

[lasel22]

Hi.  I'm sorry you are going through this.  I also saw a chiari specialist at Weil Cornell in NYC, I'm guessing we might have seen the same man because some there only see kids but he sees adults.  Well, he was a very nice man but he was completely wrong about my case.  My chiari was also considered to be 4 mm by him and he gave me the "it has to be 5 mm to be chiari" line.  When I finally saw a true chiari specialist I was told my chiari was 6-8 mm, it got larger on the sides than down the back.   I was so very dizzy and sick at that appointment with him I think he thought I was too bad for it to be chiari.  Just riding up the elevator to his floor made the floor feel like it was bouncing up and down after walking out of the elevator.  I was crying too at my appointment feeling completely helpless and hopeless.

He seemed to imply you were too old for the surgery to be of benefit.  To me that sounds wrong, you are only 56.  And I don't understand how he thinks he could have stopped the progression of the chiari if you came there sooner??

I also had that awful rocking sensation.  Constantly, it was terrible and it does make you think you are going insane.  And, honestly, after suffering through these terrible symptoms for so long I think we do go alittle crazy and have anxiety.  I feel like I am struggling through a little bit of what I call Post Traumatic Chiari Syndrome even now after having had surgery and doing a lot better.

You mentioned in one of your previous posts that you feel sick after a lot of walking.  That happened to me.  If I did too much one day I wouldn't always feel bad immediately but the next day I'd be very sick and it would last for a few days.  The more I moved my body the worse I would feel.   I couldn't even look down and do the dishes, the act of moving my arms would make me dizzy and sick.  I used to be a very athletic person, mountain biking, working out lifting weights, running, etc.  I knew something was wrong.

Well, I eventually got to a true chiari specialist, Dr. Bolognese at NSPC in Long Island and had surgery and am doing soooo much better.   I also did send my images to another specialist who leads her own clinic and she agreed it was chiari as well.  

I've found that the doctors I saw in the tri state area claimed to specialize in chiari but in fact they really were just neurosurgeons who treated many different types of neurological conditions including chiari once in a while.  When they see a "borderline" case they don't want to risk operating.  Our borderline cases of 4-6 mm needs a true specialist who ONLY deals with chiari and can recognize the history of the symptoms and determine if the chiari is the cause.

I ended up seeing two other so called chiari specialists at Mount Sinai and another one in NJ and they all told me the same thing that they don't think it was chiari.  One asked me if I did street drugs and was saying everything was in my head.  I actually yelled at him, I've never in my life yelled at a dr or anyone before.  I was so angry at the medical profession.

So, I just had to write and say I probably saw the same doctor as you and got the same answer.  But ultimately he was wrong.  I am 4 months out from surgery and doing much better, and haven't rocked or had vertigo since surgery!!! I do still occasionally get a quick wave a dizziness but nothing like before.  Look up Dr. Bolognese, he's only about 30 minutes further than Weil Cornell.  He'll give you a good second opinion.
  

[1periodfarts]

thank you so much for this detailed response.  i gathered all nine of my mri, ct, and xray discs and mailed them off to long island.  funny thing, today i saw my gp, who i like to keep in the loop on all this and when i walked in she said, "great, the ns said there is nothing wrong with you.".  i told her that wasn't what he said (but it is what he wrote in my notes) but rather he'd told me if i'd come twenty years earlier he could have helped with surgery.  i also told her about a scary incident last night.  after a screaming fight with my payroll company, clear liquid poured out of my nose for about five minutes.  i'd told the neurosurgeon's office i'd been having foul tasting post nasal drip for about two months and they told me they wanted to test it, but they forgot at my appointment.  they keep telling me i have a sinus infection which i know i do not have.  my primary doc said she thought it was a good idea to get it tested and told me to call the neurosurgeons office and just ask if i could pop in for the very simple test.  three phone calls later they were asking me a billion questions like did i hit my head, blah blah blah.  i finally hung up crying--i just want to know what the liquid pouring out of my head is and so does my gp, only she can't test me for it because she doesn't have the tools at her office.    i'm really starting to understand why so many people here complain about doctors treating them like hypochondriacs or like they are crazy.  i am a smart, high functioning businesswoman, i do my reading and research, i document my symptoms and not only can no one help me, no one wants to.  i am so frustrated.  rggh

[selmaS]

  Many of the related conditions DO cause the same symptoms of Chiari and surgery is only helpful if you had a CSF obstruction...as surgery restored flow.....if flow was not an issue surgery can not be as beneficial as if there was one.

You should have ALL related conditions ruled out to see what might be causing your symptoms now.

[1periodfarts]

yes, he is the chiari specialist at weill cornell.  no one has taken the time to rule out anything--i just have all they symptoms of chiari and it shows on my mri, so they went with that.  hard to tell what is bringing on symptoms.  lately it seems like any walking at all makes me quite sick later in the day.  the only time i feel good is at my 1 hour private pilates session where we spend loads of time working on decompressing my shoulders and neck.  trigger point acupuncture has really helped with the numb and weak feeling arm.  however, i have a rough night always after a treatment.  feels a bit like a psychotic break for a few hours, then i wake up fine.  i've been trying not to lift anything and i've given up nearly every physical activity i used to love.  biking.  hiking.  anything at the gym.  

[selmaS]

  Hi 1periodfarts and welcome to the Chiari forum.

  Do you know if this Dr was a true Chiari specialist? Were ALL related conditions ruled out?

So many of the related conditions can cause many of the same symptoms as Chiari....

May I ask, what you do on a daily basis...? certain activities can trigger symptoms to flare...