Well...NS follow-up did not go well.

[Emme80]

Just an update... My NS follow up went...bad. He says there's no reason for a follow up. And I'm giving up. I don't know what else to do but give up. He said even with this "brick" that he says he doesn't see , but shows up in CT findings still, it should not be hurting and patients are not in any pain at this point, so he's done w/me. I've cried about it today & I don't know what else to do but give up. I know I'm retreating into my "silent" recluse comer. But it's all I can do from totally breaking down.

[Just_Gina_Fair_Banks]

I just posted this on another question, but it applies here too--hang in there!  You are in the company of many people here who've dealt with doctors who are more of a problem than a solution.


In my own experience, the neurologist that I had gone to for years with my headaches had no teal knowledge of Chiari.  He had heard the term but that was about it.  I had been treated for YEARS for migraine with no improvement, only decline.  I was trying to get in with someone in another state who could possibly help me, but I needed an MRI.  When I got it, it mentioned Chiari Malformation at 5 mm and said it was an incidental and benign finding. I started looking into Chiari, found this forum, and realized that I fit in with this group.  I had no doubts.  I went back to my neurologist, I inquired about the finding wgen I was abruptly shut down and laughed at.  Yes...laughed at.

I did my homework and found a neurosurgeon who specialized in Chiari in my state.  When she looked at my MRI, while I was watching her, she measured.  She showed me exactly where the measurements are taken, and told me it was not 5 mm but 11 mm!  I couldn't believe it!  She told me I had classic presentation and that I was a perfect candidate for the decompression.  She was so right, and my relief from an 8+ years constant headache was gone!  Had I relied on my neurologist and the radiologist's interpretation, I'd still be struggling terribly.  

Please search out someone who has a working, hands-on knowledge of this problem, not someone who has just heard of it and has a general idea of it.  You'll make a much better decision about going forward if you do!

[selmaS]

  The comment "by 4 months people are bouncing back from this surgery" is just enuff to make me scream....it took me a lot longer....a lot///it depends on the individual and what is going on post op and other underlying conditions.....how dare that Dr make you seem as if you are not following the course of "normal" recovery...ugh

Hang in there.we are all here for you and if you want read some of my journals with my recovery....it took much longer then 4 months....

[Emme80]

hello all. I must admit, I had a complete nervous breakdown. Still.shaking from it & It's like my body uncontrollably shakes/seizes(not seizures). I just collapsed....I'd hit my wall. Had enough of 3 answers (contradicting "answers" w/in one conversation...beyond frustrating.)   I didn't mean to worry anybody.... I'm not suicidal (though there are days I wish God would just take me-bit I can't do that myself.) But I'm...tired. Have no fight in me. Exhausted. The pain is rising back to where it was before it was "managed". It woke me at 3am& have been awake since. There's so many things- while dealing w/pain, pressure, spasms...my whole below shoulders on up is....wound like a top w/no relief. All that!(I'mnNOT saying my situation is worse than anybody else here- I'm no special case!) while there's 100% contradiction with what CT findings are & what he "see's" (NS... No longer my NS!) on images vs. CT "findings"....which state size of "collected fluids" , as well as other things that he said he doesn't "see" on images ("suggestive of meningocele"),  a "small CSF leak", severely thinned & possible small fracture cribriform plate but more imaging needed to determine...He originally said tinnitus is a classic/top symptom-now he thinks tinnitus has nothing to do w/Chiari. He said by 4mo., people are "bouncing back" by now...but I look like I just had the surgery a "few days ago/yesterday....blah blah blah, I'm trying to get in order all these appts. that seem far off (Feb. 5th doesn't seem that far away, but right now it does). Keep a smile, but I can't hold the smile any longer. I'm in 8/10 pain,
Kerri, you're right-I wouldn't want him to open me again...He certainly said he dealt w/1-2 Chiari patients a month.
Now, I doubt him/he's just not up for dealing w/me. Even the PM has turned into a complete debacle-I'm just glad I had a 2nd person to witness my "directions" which are now being challenged...as though in taking not as prescribed...and I am SO diligent & careful w/such matters. My NL said her hands are kind of "tied" at the moment, but is going to try to get me in earlier w/the new PM clinic. Yet NS said other than referral, he doesn't need to send over all documentation....which I know, by law, are mine.
It's just been.....I crumbled. Still am. So little sleep...anxious, stressed and giving up all at the same time. As CT states, the "collected fluids" have reduced by a fraction-yay! But by the time I get into these placrs(diff. Dr's, etc), the darn brick will prob. be gone!
So..... Thus, my "I give up". I'm broken right now. And I don't know what's next.
But I'm sorry to cause any concern.
Thank you Selma, gjjl, lassel, Kerri Blueghost!
P.S. I think I will take your offer to PM you...thank you.
Body is stillllll going into spasms...ugh!

[gjjl]

I agree with all the ladies!! Don't give up!!! You can't blame yourself because your doctor isn't experienced enough to help you, giving up will only hurt you in long run. You should definitely look into another NS. Some doctors have just totally lost their instinct to truly help patients. I'm so sorry you're having this horrible time trying to get help. I'm here anytime you need to vent. Prayers heading your way!!

[selmaS]

  Hi Swettie....listen  do not let this Dr get the best of you.....you know something is wrong and unfortunately that Dr is not well experienced to know what is going on so he wants to wash his hands of you....

You need a true Chiari specialist to help you....and they will....take a deep breathe and know you can get past this and begin to feel better.

[KerriC1]

oh emme I'm very sorry he blew you off. I know exactly how that feels. But trust me, things happen for a reason and it's probably for the best that he did. You do need to get another opinion. Sending prayers for your comfort and pain relief

[Blueghost]

Im with Lasel, you need a 2nd opinion.

[lasel22]

You really need to send all your images and reports to another chiari specialist.  Was your neurosurgeon considered a true specialist, meaning he only deals with chiari and related conditions?  I just feel like he's blowing you off because he just doesn't know what to do, and instead of telling you something is indeed wrong and I don't know how to fix it he is just pushing you away.

At least get a second opinion from a true specialist before giving up.  

If you'd like to private message me I'll tell you my experience with my NS and how to contact him if you want to send him your images.  He's one of the leading specialists for chiari and has a procedure in place for reviewing images.  If he or another true specialist tells you the same thing as your NS at least you can put it to rest and try and move on.

Think about it this way, if your current NS did say he knew what's wrong and he thinks another surgery would fix it, would you even want him to do it after all you've been through with him and his office.  If I was in your shoes, from what you have posted, I would want someone else.