Neurosurgeon or Neurologist for 2nd Opinion on Chiari

[AlishaNiven]

Hi all,

Firstly I would just like to say thank you to everyone for sharing your experience - this forum has been a great help!

I was diagnosed with Chiari Type 1 a week ago, the herniation is just below 12mm. When seeing the neurosurgeon he diagnosed me with both post concussive syndrome and Chiari but told me the CM was not causing my symptoms. I struggle to believe this as I had a motor accident in 2010 and the symptoms subsided 3/4 months thereafter. I had my appendix removed in late June 2013 and had a 2nd op in November. Since then all of the symptoms started and have progressed to daily in the past 4 months. I suffered from exertion headaches 5 days after the accident in 2010 but they subsided, from then on headaches where just more painful than usual but not daily.

Before I list my symptoms and long story, I would like to know your thoughts on getting a 2nd opinion, bearing in mind I am in Johannesburg, South Africa - there are no CM specialists here, would it be best to see another Neurosurgeon or Neurologist?  Previously my NL referred me to the NS after having an MRI, EEG and angiogram.

Here are my current list of symptoms, whom according to the NS only headaches are from Chairi the rest are post concussive syndrome; I was also diagnosed with scoliosis but that was dismissed as well;

1. Headaches starting at the back of my head, pulsing pain behind my
ears
- this pain turns to throbbing piercing stabbing like pressure from
the middle of my head to my temples when I take any form of strain
2. Constant ringing in the ears
3. Dizziness
4. Nausea
5. Severe neck,
shoulder and lower back pain, standing for 15mins is a challenge
6. Blurred vision
7. Sensitivity to light and noise
8. Difficulty swallowing, feels like
everything gets stuck
9. Difficulty chewing, chewing has slowly digressed, it takes me much longer than normal to get through a meal and my nausea is worsened by this
8. Upper palette sensitivity,
crunchy or hard foods are almost a no go
9. Tingling in feet and
forearms + hands
10. Week and stiff fingers
11. Loss of appetite
Lost 14kgs in just over 2 years
12. Extreme fatigue
13. Very low immune system
14. Constant nasal
infections and allergies - daily post nasal drip with or without infection
15. Slow loss of bladder control, the urgency to urinate has gotten far worse
16. What I can best describe is a brain fog where I have trouble remembering things I have said or done
17. Jaw stiffness
I was convinced my wisdoms teeth where making my headaches worse so had those removed at the dentist - no help!
18. Ear ache and tingling/ burning

After all of that I walked out of the NS office with no clarity on either diagnosis, I was basically told there is nothing that can be done and I should go for behavioral therapy to learn how to cope with my symptoms. Yet before we got into my symptoms he told me how excited he was to see my scan because he has been waiting for so long to operate on some one with a "good" CM!

At this point absolutely shocked and terrified, I've gone back to my GP who sent me to the NL in the first place and she has been of no help either! At this point I just want to know where to start in terms if managing my symptoms so I can return to normal life!

Thanks to all of you who took the time to read this long winded post and give your advice/offer help!

Alisha

[selmaS]

  Hi...I was not on this which is a combo of esomeprazole and naproxen.But I was on both of them.....the esomeprazole is a PPI (proton pump inhibitor) which blocks acid from forming, so u must have GERD and acid reflux like most of us....for me the PPI stopped working and I am now on a H2blocker.

As for Naproxen or Gabapentin (generic) I was on this for a short time and it too forever to get myself straightened out as I have IBS and it did affect that condition for me.

Everyone is different....and why they get the naproxen....for me it was to help me sleep and help with pain, but it didn't do nething but upset my digestive track.

As I said we are all different and these meds may work great for u....so, it is best to give them a try, but the first sign of a side effect u should call ur Dr and let them know....

Good Luck

[AlishaNiven]

Has anyone ever taken Vimovo? And if so how was your experience? The NL prescribed that too me today along with 20mg of beta blockers per day.

[AlishaNiven]

Thanks so much Selma, really appreciated so much. I'll post back here with any progress - I did see the threads!

Your a gem, thank you for your help and advice.

A

[selmaS]

  Forgot to mention I did bump up this thread for u -

http://www.medhelp.org/posts/Chiari-Malformation/Unofficial-Symptoms-List-/show/1192372

[selmaS]

  Yeah , pretty many of them will even e-mail with a patient b4 u r one of theirs...I did that and the Dr I was corresponding with never was my Dr, but helped me out quite a bit, told me what testing to have done and how to forward info to the office....

They may want ur Dr to contact them, so it may help to e-mail them, and then ask if they would do a consult with ur Dr given where u live....never hurts to ask.

  Good Luck

[AlishaNiven]

Hi Selma - thank you for your response, much appreciated and apologies for the long list of symptoms, thank you for reading through it though!

I will deff take the advice of getting my next Dr to consult with a specialist in the states - is there any particular way I should go about contacting those Dr's on the list or just a matter of calling them up?

[selmaS]

  Hi and welcome to the Chiari forum.

We have a list or as many of us refer to it as a Manifesto as it is large...but our list of symptoms...not all of the members have the same symptoms, and not all have been in a MVA but if u look at the list u will see similarities to ur own list....even true Chiari specialists do not recognize ALL we have in our MANIFESTO...and why we list it here...as it is too coincidental that we all have these issues that Drs do not feel are Chiari.

Please see list in Health Pages-http://www.medhelp.org/health_pages/list?cid=186

I will also bump up the thread.

A 2nd and 3 rd opinion definitely...see if ur Drs will consult with a Chiari specialist here in the states....that way u get the opinion of  a Dr here, and the help there....  use the list of Drs in the Health Pages to get names of Drs that might consult with ur Drs.