Occipital Neuralgia/Block and Chiari

[jenniferk86]

Ok.. so I am seeing Dr. Oro.. He will not do surgery unless He rules out everything else first... I am having every symptom you can think of.. drop attacks , pain, balance issues, memory issues, headaches every day, overcrowding with 11mm herniation and complete csf blockage in posterior, severe fatigue and very frustrated especially with him... because I though after reading his poem and everything about him, that he would say, yep let's do surgery..

I have a very good feeling that Chiari is the culprit and why the heck would I put myself through brain surgery and risk all the risks just to stop the progression if I didn't think it could help? I don't know... but I was dissapointed but agreed to do all the stuff he asked, I went on the Paleo diet.. to decrease inflamation.. I went to Physical therapy to help my bulding disc in c5/6 and now he wants me to be evaluated for occipital neuralgia to make sure that its not the culprit for my headaches... he says that an 11mm herniation may not cause my headaches because he usually sees them much more extreme....

I don't suffer from just headaches!!! sorry to vent.. but I just thought i heard so much great things about dr. Oro?? anyways... I am trying to be patient but its been a year and I am so tired of feeling like this.. and yes it has only been since April that I have gotten a diagnosis and an appointment with him.. but with the drop attacks, complete blockage and the severe blockage overcrowding and my life quality being at a 2 on a scale of 1-10  what more does it take to convince a doc to do surgery to take that chance that it might help? any suggestions??

anyways... on to my next question and point... I am doing what he asked and going to a pain manangement specialist to be evaluated for occipital neuralgia and getting an occipital nerve block... has anyone had this and has it helped? does it touch anything chiari related ? or will it definitely tell me whether my headaches are chiari related or occipital nerve related? any help is appreciated

Thanks.

[selmaS]

  Well if he only spent 10 mins with u, and ordered more tests, there must be a reason y...it is not that he doubts ur symptoms or ur chiari, I really believe that...if he felt u did not have a chiari issue, he would not make an appointment with u.,.same with TCI.,..they will look at MRI's and not have u come in if they truly felt they could not help u.

When do u see him again?

[jenniferk86]

Just wanted to give an update and let you all know that the occipital nerve blocks are still not working at all... but I think the sacro illiac joint injections are helping a bit with my joint pain in my hips and lower back... so that is a plus.. and I did listen to my recording of my appointment with Dr. Oro.. and I wanted to clarify also that I do not think Dr. Oro is bad.  I think he is very thorough.. I think I am just very impatient and tired of hurting that is all.  I am just wanting some relief and I don't want to be told to try something else because I have been tested and tried so many things for the past year that I am tired of it and when I got a diagnosis I thought it was the end of testing and trying... and Selma is right.  Dr. Oro wouldn't be a good doc if he didnt send me to make sure there weren't other options first to help before sending me straight for surgery.. and he did mention which I must have forgotten that if these things were not helping that we would move forward with decompression surgery and talk about it at our next visit... I was just having a really bad pain day and I seem to forget those things and my patience goes away...

[MikeO31]

I've had the blocks done as well, by the time I went in for the 3rd set of injections (I had 4 shots 3 times in the span of a couple months I believe it was) the first set just took a little of the edge off, the second set I was alright as long as I didn't sit for long periods of time the third set the pain was under control, but for me it was just a general pain and nothing to do with my headaches.

They say patience is a virtue, and when you've got chiari patience is something you end up developing while waiting for them to get to the bottom of the issue.

All you can do is take one day at a time, try not to borrow trouble, and make the most of the "good days"

[cash242]

Just want you to know I so get your frustration and have been praying that you have answers! I havent had a good day in so long that I am not sure what that is!! We actually live very close--have a good one and hang in there!

[selmaS]

  Just know u r not alone in how u feel regarding all this....and yes, it does take patience...and  that is diff to hold on to when we have a time frame hanging over our head.....plus, all this stress just adds to how we feel, making the HA's worse....

Try to relax and know things will work out.
     "selma"

[jenniferk86]

Thank you Selma.... I am thankful  for you... and I know that God will get me to where I need to be and take care of me.. its just some days I feel like I need to know the answer now .... I need to be blessed with a little more patience that's all.  I am sure we all have our days... and lately I have just had a lot of those days and the good ones are like a distant memory and its hard...

[selmaS]

  I am sorry the NBs r not giving u ne relief.....I did not have them so I can not offer a time frame....

And I know how stressed u r with ins...I too was running against the clock when I had my surgery....it is added stress none of us needs.....

  Sending u good vibes ~~~~ and prayers u feel relief soon : )

          "selma"

[jenniferk86]

Oh.. and for the record... I did not ask for surgery or self diagnose. I simply went in there and told him my symptoms... I am just saying now and after all I have been through and the daily narcotic pain meds that I am on and the fact that I already cannot stand the pain or do normal daily activities and I honestly wish that I would just die somedays over going through this pain, you would think it would be warrant enough for someone to consider it.... thats all..

[jenniferk86]

When is it supposed to work? I got them yesterday and I am not experiencing any relief....

[actressmouse]

I had the Occipital Nerve Block injections back in February of this year (2011).  The 4 injections were not painful (compared to the headache pain!); however, relief for me only lasted 36 hours.  I must say, it was the most blissful 36 hours I've had in a long time...I had no idea how much pain I was dealing with on a daily basis and just "plowing through".  My pain NL said that sometimes it works and sometimes it does not.  His take was that 36 hours was not a long enough time to warrant repeating the process.  I'm now being evaled for surgery.  Hope you find longer relief. Good luck!!

[denverluv]

im not being against u or anything i just feel like sometimes when people go in telling dr oro what they ahve- sort of self diagnosing and asking for surgery, he tends to really be cautious and make sure surgery is needed- i went in, saw him for 10 ~pmin, and he said i had to have the surgery- i dont understand why people start saying hes not a good dr just because he didnt give them sugery because they thought they needed it- by the way- i was diagnosed with the occipital neuralga after my surgery because havig the sugery really didnt help with my headaches- and yes i get the nerve blocks every couple months- and it does help- and i can also say that i do have other issues that i didnt have before the surgery- so really, he is being a good doctor and not putting u through a very painful and traumatic surgery if its not going to help- my blockage and herniation was so severe i almost died one night- thats why i had to do it- but i can hoestly say that ad it not been for that reason i might have regretted having the surgery- its been a yr im still in horrible pain and where the surgery site was i now have nerve damage which if i barely touch it it hurts so bad ill pass out- it hurts 24hrs a day- i have nerve damage where they did the laminectomy, and i cant keep my neck upright without it causing pain. i cant ever get comfortable, whereas before the surgery i had all the classic symptoms, but sometimes i think if i ahd known then what i know now, and again as far as it almost killing me, i probably would not have gone through with it- not saying dr oro screwd up or nything- by definition the surgery was a success- but it did cause other problems, leaving me on heavy pain medication for the rest of my life, not ever being able to sit right, or run, or bend over, or lay in bed comfortably, having shooting pains through my neck shoulders and arms- i could go on. my point is, he does care for u and he is the expert-he is trying to not cause u more pain by doing what u think u need to do and only doing what is best

[jenshead]

I can't even say anything about chiari specialists because I haven't gotten in to see one yet.  It seems like all specialists have this issue.  I couldn't walk (knee injury) for 6 months as a teenager because doctors were too busy to see me.  If jennifer's (and the rest of our) doctors prior to the chiari specialist could run tests in a timely manner, we would all be saved a great deal of pain, and doctors like Dr. Oro would be able to devote more time to the Chiari.  This is a crisis in US medicine if you ask me...

[selmaS]

  Yes, I do feel it is the lack of well informed  and experienced Drs with chiari...u will find Drs that say they can do surgery have openings  and r easy to get into, but try a true chiari specialist, they r diff to get in as we all want the best care....so unfortunately, the Drs have to take us by need first...who is in a medical crisis gets in first and then so on...it does not mean u do not need to be seen or treated, it just means someone may be a little worse off.

And if only we could get the medical schools to teach this condition correctly...how to just dx it would be a blessing.

   "selma"

[jenshead]

To me the most disturbing part of all of this is that doctors seem perfectly content with making us wait YEARS to get relief.  I'm not saying Dr. Oro or anyone else should say "well it's been too long, let's go ahead and do the surgery."  I'm more curious why it has taken so long to rule "everything else" out.  

Well...I'm not curious, I know why, at least in my case.  Even if you are bedridden, you're not "severe" enough to get seen more than once every 2-3 months.  Are there too few doctors?  If so, I don't think the issue is being made as visible as it should be (media and whatnot).  

This is what makes me consider showing up at my next appointment unmedicated.  That would be entertaining for all!

[jenniferk86]

I see him July 11th.  

cash242... don't be too discouraged... maybe he had a bad day... I did have 2 or 3 people that were people who had surgery before by someone else, and come to him to have it redone.. and one that had the surgery by him that was following up in the waiting room both that had come from out of the country to see him and they had said he was so amazing and worth the wait.. maybe thats why I was dissapointed... that he had changed their life.. so don't be worried too much because of what my experience was.

[cash242]

Wow I just made an appt with him and am worried it wont go well! Just fyi I did have decompression surgery and glad I did it but am still suffering.  I dont blame you one bit for being frustrated I would be also.  I know insurance is huge! Do you feel he was worth it at all? I live close so will probably go but am worried that I too will be disappointed.  Am sorry but hang in there!

[jenniferk86]

how do I know if I have normal odontoid bone?  They did not mention this on MRI and neither did Dr. Oro.. would it show up on MRI? would he mention this?

[selmaS]

It is possible to have a retroflexed odontoid, that puts pressure on the brain stem and can cause an obstruction...mine was part this and part the tonsils...plus, it will cause drop attacks....my tonsils were only 4mm and 6mm....so they were no huge, but bcuz of the odontoid, the space was limited even more.

It is more the shape of the tonsils......than the length.

[jenniferk86]

and thank you for your insight.  

[jenniferk86]

how would my symptoms cause csf obstruction? curious? and drop attacks? I thought there was no other cause for that?  also I just kinda was baffled cause i heard a lot that the size of the herniation doesnt matter and he acted like it did...

[selmaS]

  I understand how u feel, but it is possible it is not the tonsils causing the CSF obstruction and ultimately ur symptoms....

This is the best way to do this, and he is not doubting u have issues, he is being thorough.If he were to rush u into surgery and not check and later u found u had other issues that required surgery and u felt no better...u would not be happy with that....give him time to figure out what is best for u.

  

[jenniferk86]

oh... and I did not mention.... I would not be rushing it if I did not have an insurance issue... I will no longer have insurance in November... and I will have the surgery paid for and I will only be paying about 15.00 if I get the surgery done now... so I will probably and most likely at some point need the surgery right? even if not now? especially because of the blockage?

I am not in any way saying that I shouldn't have to or don't want to be tested for other things.. I definitely think that is wise. I just feel like he is just like everyone else in saying it may be incidental and I thought him of all with his poem would be the opposite... and He didnt check me for tethered cord or Ehlers danlos, I waited a whole 2 months to see him and I got to spend about 10 min with him...

and if in 5 years or in a year I don't have insurance... I won't be able to pay for it.. I will be screwed... and I am in so much pain and my life quality is awful... I just don't understand.. that's all... I just wish that someone could look at "my" situation and see what's best for ME and not just the average situation or how the textbook way to do things..

[jenniferk86]

I am not opposed to trying other things first, I am just upset that he of all people is saying that he doubts that it is chiari related just based on the size.. and even you say the size don't matter especially when my reports and everything else say I have complete CSF obstruction.  

[selmaS]

  Hi..I totally understand how u feel, but it does take time, and he would not be a good Dr if he did not rule these other issues out...I got a dx in Feb of '08 and did not have surgery until May '09...I had drop attacks, CSF obstruction etc...u name it...but u have to have the testing done.

This surgery is not a cure and can cause more issues and he is looking out for ur best interests.

So many go and have surgery by a NS that is willing to do it...and end up with more issues as a result...take the time, and have everything done right...not everyone with chiari is a surgical candidate.


Take a deep breathe..and relax.....

  I did not have the occipital nerve block, but also having tethered cord, they knew my issues were chiari related,although I did have a bulging disk that slipped oout futher post op and is now causing even more issues.....

I did have some other injections, PT and a bunch of other things that were tried first...surgery is and always should be the last resort, and should the benefits should outweigh the risks.

  Good luck
   "selma"