What medicines should I talk to my neurologist about pain associated with Chiari?

[Mikey42086]

Hello.  I'm a 27-year old male who was just diagnosed with Arnold Chiari Malformation Type I this afternoon.  I had an MRI done yesterday and the imaging center provided me with a disc containing all of the images they had taken.  It didn't take me too long before I noticed the herniated cerebellum and immediately contacted my doctor.  I know doctors hate it when patients self-diagnose, but my call prompted him to get the MRI records ASAP and review them.  Lo and behold, I have Chairi.  I have an appointment with him tomorrow afternoon to discuss what my next step is.

I've been experiencing chronic, almost debilitating neck pain for the last five years of my life and have just shrugged it off as an old football injury.  Apparently it was something much more severe.

My question is this:  What medicines can I ask my doctor to prescribe me without coming off as a "drug seeker" or an "addict"?

I currently take approximately 8-10 220mg Naproxen Sodium (Aleve) tablets, 2 50mg Tramadol (Ultram) tablets, a 25mg Topiramate (Topamax) tablet in the morning, and a 10mg Amitriptyline (Elavil) tablet before bedtime.  The Topamax and Elavil were prescribed by my neurologist on my last visit, when I believe he thought I was just suffering from migraines.

Like I said earlier, I don't want to come off as someone who's trying to get "high" off my pain medicine.  I just want to feel better until surgery (or whatever they plan on doing).  The pain has gotten to the point where I can barely operate my car, anymore, and taking my dog for a short walk usually leaves me bedridden for the good part of an hour.  I just want to lead a normal life.  This had become depressing and frustrating for me, as the pain skyrocketed about a month ago due to a severe cough I had, and hasn't seem to have went down.

I'm no stranger to strong opiate medications, either.  I've passed six kidney stones naturally (ugh...) with the help of 10mg Percocets.  I don't know if I should just come out and say this to my neurologist, or just let him pick a medicine for me and pray that it works.

I'm sorry if I'm rambling.  I'm just very scared, frustrated, and nervous.  I want to get better.  

Any help is greatly appreciated.

Thank you.

[AnnieDear]

Hi Mike,

I haven't been on here for awhile, but I was diagnosed after a car accident in June 2011. My condition continued to deteriorate drastically after the accident, so I had surgery in March 2012. I have had many issues resolve after surgery, some that have stayed, some that have gotten worse. This is not an easy condition to live with. I tried to take only OTC meds for the past year and a half, but I have been flat out miserable. The horrible pain in my head, neck, & shoulders combined with the memory problems, reading problems, thinking problems, trouble finding the right word to say, inability to focus, and the numbness of my left side and sometimes face has made it hard to function. I finally asked my PCP (whom I've seen for the past six years, most importantly BEFORE these issues so he knows who I used to be) to help with pain management. He has me trying Robaxin and Tylenol 3 every 12 hours. It does NOT help much and I never feel good. But if I don't take the Robaxin prior to the 12 hour mark, it gets worse. So I know it's doing something. In my experience, the muscle relaxer has always provided the most relief. I hope you find some relief.

Also, I wanted to ask if they screened you for a syrinx in your spine. I have one the length of my thoracic spine, but it seems they are typically found in the cervical spine. The syrinx causes a lot of trouble for me, so if you have any numbness, tingling, or pins and needles, I recommend making sure they screened your whole spine for a syrinx (cyst).

Best wishes,
Annie

[The_beat_goes_on]

Hey Mikey --

How did the appointment with your neurologist go?  Unfortunately neurologists really aren't the best doctors to consult for Chiari ... and you should be looking into finding a Neurosurgeon that specializes in Chiari (Selma has a list!)

It sounds like you are on some of the medications that might be tried to treat some of the symptoms of Chiari ... I was on tramadol for about a year and I think it worked for 3 months .... Like Selma said, if you think you might be headed in the direction of surgery, do NOT get on any opioid medications if you can help it!  Maybe for really bad days, but definitely not daily, if it's at all possible to avoid.  I was taking a steady stream of Norco (I had some cardiac surgeries / ablations  on top of my Chiari pain) I am a fairly petite, youngish woman (28) and after my surgery, in ICU, because of my tolerance to opioid medication, they could not GIVE me enough without my risking cardiac arrest or a coma.  So I was in excruciating pain and I would have rather been able to slip into a coma.  A resident joked with me later saying he would have let me, but the hospital frowns on that sort of thing.   ;P

As for risking looking like a drug-seeker, I would let your doctor recommend something and then be honest and let him know what works.  I hope you get some relief soon.

[selmaS]

  No surgery is not a fix all or cure...and can cause u to feel worse...this is y it is very important to know ALL related and non related conditions u may have in addition to Chiari.

lol..Chiari causes brain fog and cognitive issues and sometimes I do not see the problem until I post....so I blame Chiari like the rest of us Chiarians do....

Tremors could be Chiari related or they may be from an underlying related condition...I get them too, but I was told mine are most likely due to a condition I have in addition called Ehlers-Danlos.

We are all different as to how well our body responds to the surgery....for example....if u have surgery and did not know u had ehlers-danlos u could have setbacks due to rejection of the dura patch, the staples could tear ur skin and the incision not heal properly...and u could develop a CSF leak...

ALL of which could result in needing another surgery.....

SO it is best to get ALL the testing done now, take it slow....if ur Chiari is congenital,....u had it ur whole life and unless u develop a life threatening issue take ur time, educate urself and research Drs as finding the right one is key.

[Mikey42086]

I'm unsure how it's affecting my overall health, or if there is an obstruction.  I'll know tomorrow when I speak with my neurologist.

The only other testing I have had for this was a CT Scan Without Contrast when I went to the ER a few weeks ago believing my headache was so bad that I had burst a blood vessel.  My neurologist also had me to an in-office ENG test at his office the day before my MRI.

My guess would be that this is a congenital form, as I've been experiencing an "ache" in the right side of my neck/ shoulder region since 2005ish.

So, surgery isn't going to be a fix-all?  I didn't think it was going to be that easy.  Is my condition going to continue to deteriorate, or will surgery, at least, be able to halt the progression?

I've also got a couple other quick questions.  You posted "know ur not along" and then corrected yourself, but said "lol... got to love Chiari".  Is dyslexia, or other similar disorders common with Chiari?  I've been noticing my dyslexia has been getting much worse over the last few months.

Also, the last few years I've been experiencing hand tremors.  Are these also common?

Thank you so much for your input, selmaS.  I wish I could say that it's reassuring, but I'd rather be afraid and informed than be ignorant and happy.

[selmaS]

  Not along, it should be alone.!!! lol..got to love Chiari.

[selmaS]

  Hi and welcome to the Chiari forum.

Chiarians generally do not find a med that helps with this pain.....since the symptoms cycle many of us got thru the flares with OTC meds...which may take the edge off....but if u should be headed for surgery u will not want to be on meds b4 as the meds needed for surgery and post op may no longer have an effect....

I know and understand the pain u r in, and know all too well how meds do not work.

What u will want to know is how is ur Chiari affecting u and ur overall health....do u have a CSF obstruction, do u have other related conditions....

What other testing have u had?

U will have to avoid certain activities that may make ur symptoms flare and plan what u do around having days off to regroup....that is what so many of us do....both pre and post op.

Surgery is not a cure, nor does it relieve all the symptoms, it is only a means to restore CSF flow and slow progression.

Make sure u know if ur Chiari is congenital or acquired....

And know u r not along.

[Mikey42086]

Also, I wanted to mention that I'm well aware of the automated prescription tracking system that my state has and know that I do not get prescribed any medicines that would be considered Schedule IV, or above.  Other than the percocets that I received in June of last year for kidney stones.  Should I flat-out tell my doctor to run a check on me so that he can trust me?