Newly diagnosed. Surgery?

[DallasKruse]

Hello to everyone.

I'm a 34 yr old male who just got diagnosed with Chiari yesterday. I have approx 7+mm herniation.

My story is long but I'll make it short.

2002 started having severe anxiety and panic attacks. Also short bouts of "tension headaches" and nausea.

2004 started with vertigo, nystagmus, severe nausea and anxiety and panic attacks.  MRI showed low lying cerebellar tonsils by 3mm.

Dec 2011 stomach issues. Weight loss (60 lbs). Anxiety. Dizzy. Nausea. Et al.

Oct 2012 severe nausea. Headaches at base of skull. Nystagmus. Anxiety. Panic. Tingling in some extremities.

Jan 2013 I saw a top neurosurgeon and seeing my 6 year old MRI he said he wouldn't want to do decompression surgery on me due to my profession, the odds of full recovery, and 3mm isn't drastic enough.

He ordered another MRI.

Now I have 7mm herniation and considering I've been bed ridden for 2 months, he said I'm a candidate for surgery.

I am very discouraged at reading surgery outcomes. It seems its about a ratio of 10 to 1 in regards to complications versus success.

I have the top rated neurosurgeon in my large CA county so I trust him ... I just don't know what to do.

I'm battling depression and trying to find and pray for answers.


I have had zero relief of symptoms, save taking diazepam just to be able to get out of bed and do something.

The Neuro sent me to a psychiatrist who prescribed seroquil for anxiety depression.... To see how much of my symptoms are emotionally related.

Just looking for some insight and support for someone who does not want to have surgery and regret it.

God's love
Dallas

[selmaS]

  We do have a list of Drs that members here have been to...this list is NOT a referral only a means to help u start researching Drs...

The thread is on this page or u can go to the Health Pages. I know in CA there r a few....and keep in mind u may have to travel to get to a Dr, many of us do.

[DallasKruse]

Thank you for the replies.

I'm in Southern California and will research Chiari specialists.

If anyone has any leads, it's much appreciated.

[Sabbynal]

Hi Dallas, I echo Selma's remarks about seeing another dr. I had access to the top NS in the state in his field, and he told us that not all NS handle Chiari, because it really is a niche area of the field.  He told us to look for a specialist in Chiari.

Regarding your MRI results, it's important to know that the size of the herniation is not the greatest concern. It is the effect that it has on you that matters most. When you have debilitating symptoms,you have surgery. I had surgery 18 months ago and the results gave me my life back. The recovery takes about two years to fully see all your improvements, and since neurosurgery is basically a controlled head trauma, you have some weird symptoms from time to time while you recover. But NOT having surgery, especially if your sypmtoms have already escalated, can leave you with permanent brain damage that cannot be reveresed. Contradictory to what some research may tell you, if your herniation blocks off all of your csf flow for long enough, you can end up with total paralysis or death.

That is why SelmaS is saying you need a CINE flow study and these other tests, because that tells the dr how much cerebral spinal fluid is getting through the logjam in your spinal cord created by the brain's intrusion into your spinal column. Also, Chiari typically can run with some pretty ugly mates like syrinx and tethered cord syndrome, one seems to follow another. So you should have that checked by someone who sees it all the time.

I saw several drs before I got in with Dr. Capocelli, who trained at the Chiari Institute. The others had good intentions, but were not experienced with THIS surgery enough for me to take the risk. Specialists will have hundreds of surgical experiences in Chiari alone, and will be on top of all the newest procedures and on the cutting edge. I had a surgery that my dr developed for a kick-boxer, so that as a mom I can get back to my 24/7/365 job without missing anything.

You can get better. I'll certainly be praying for you, it's a lot to walk through, but you aren't alone.

God Bless,
Abby

[selmaS]

  Well when u google his name Chiari does not show in his specialties....he may be a very good NS top in his field, but a Chiari specialist is one that his whole focus is on Chiari and Chiari related conditions.....

U r the one that has to be comfortable with ur Dr and his treatment plan...but I always suggest u get a few opinions and compare Drs and treatment options.

If u r happy with ur Dr, then u should move forward with his plan for u.

[DallasKruse]

I have dr Duma in Newport beach, ca.

As far as I know, he is a Chiari specialist.

[selmaS]

  Hi and welcome to the Chiari forum.

I am glad u have a Dr u feel is good in neurology, but u want one that is a Chiari specialist.

Did this Dr do a CINE MRI to see if u have a CSF obstruction?....or testing to see if u have ne related conditions, ie- syrinx, tethered cord, sleep apnea, disk issues , ehlers-danlos,ICP, POTS....??

Many of the post op stories where things can go wrong include a Dr that is not well experienced or testing for related conditions that was not done b4 surgery....these conditions can affect how u feel and heal post op.

Do get another opinion...I realize u r bed ridden and not sure what u do for  ur profession...but this should have been looked at closer as it is not the size of the herniation, but CSF flow, and symptoms how it affects u and ur overall health.

I had surgery and I would do it all over again, I had a great Dr and my results were great as well !