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diagnosed with chiari

I was told I have a Chiari malformation by a neurologist after having an MRI done. He acted like it was no big deal and basically blew me off having answered none of my questions and leaving me in the dark about it all. I  was referred to a pain specialist who did an injection in my neck and then sent me to a  Rheumatoid Dr. who put me on Ultram. I have been taking Ultram for 2 yrs. now. It helps with the pain but is less and less effective. There has been no follow up or other mention of the condition in all this time. I still have headaches with pressure mostly behind my right eye. I have trouble swallowing , its like my throat quits working. I'm afraid that the Ultram is only getting me by while masking the symptoms. It all started about 2 1/2 years ago with numbness in my hands,feet,legs,arms and face, muscle weakness and fatigue. After reading parts of this post I now realize that I have had many symptoms all the way back to my childhood and just had no way to label them. Sad but it actually feels kinda good to finally have a dart board to throw things at now. I am a 50 yr. old male in North Georgia. I'm not sure what I should do from here as the the "Doctors" thus far have been no real help. Any advise you can give would be great. Thanks  
Best Answer
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

As the other members have mentioned u will want to locate a true Chiari specialist as Chiari is not well known to many, including Drs as it is not covered extensively in medical school....

We do have a list of Drs for u to use to research as the list is not meant to be used as a referral nor an endorsement for those listed on it....just as a means to help u get started researching....keep in mind u may have to travel to get to a Dr...many of us do.

http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186


In addition to this list, the Health pages has info that u will find helpful as well....http://www.medhelp.org/health_pages/list?cid=186

Know u are not alone.
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620923 tn?1452915648
COMMUNITY LEADER

  Thank u for ur kind words...and I am a fighter and I  did push myself long b4 I had my DX.....and it took far too long to get it....now I am 5 yrs post op and doing better with each year that passes.....I have found patience and time...and to not try and rush things....

I enjoy giving back to this community as it was here I got my info....not sure I could see myself writing, but am willing to share what I have learned along the way with this condition and the related ones.

BTW- I use those fun words too, thing a ma bob, doo hicky...etc.....sometimes those words elude me....lol...we have to laugh at it or it will drive us crazy...
Helpful - 0
Avatar universal
Thanks again for your kind words and encouragement, I know you're right about all. I admit to being stubborn and a touch hard headed when it comes to accepting things I cant change but i'm trying to stay positive and will keep plugging away at a normal life until the last straw falls. I'm already eating better exercising and losing weight so that if surgery is unavoidable at least i'll be as healthy as  I can when the time comes. I know I'm lucky already to only be dealing with mostly pain as the major symptom at this point. I've always had to have a good sense of balance, probably from years on a boat, but here lately I catch myself side stepping for no good reason and like others knocking things over when I reach for them. One person said used words like do-hicky or thingy to describe things she is trying to say and I'm guilty of that one also but all in all I still consider myself lucky at this point cause things could be worse for sure and I may be down at times but certainly not out. Thanks again  and I hope you and all yours keep fighting the good fight. You seem like a survivor to me and you are a good person for your selfless efforts on here and maybe you can find way turn what you do here into a means of income by way of writing advice and resource books that help others with this condition, anyway good luck to you in all you do.    
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  As I may have said b4, u r not alone especially  in how u feel...not sure I met neone with Chiari that did not share each of the ones u listed.....

Chiari is life altering...and does not mean no more life, just a different way...we all find a new path...new things we can do that we may never have tried b4....

I may no longer work, but I have not given up on earning an income...and am looking into what I can do from home....

U may have a similar choice to possibly move from one area to another...mayb instruction...instead of the actual doing....as I am sure u have the knowledge and skills to do that and u keep  ur job....it just may be a different path....be open and wait to see what u r told...and if u have surgery, to see how u do....waiting will be a big thing u will need to do, so u will need to develop patience....and remember to keep on waiting and not push forward even if u begin to feel well...it takes time to heal...not always as long to start to feel better and we can over do it ....so, patience... take  a deep breath and remember to exhale.
Helpful - 0
Avatar universal
Hi Selma, thanks for asking how I'm feeling. It seems like such a small question but I really don't even know where to begin answering that. I mean 2 yrs. ago I started having numbness is different body parts, neck pain which lead me to begin trying to find out why only to be shuffled from dr to dr to dr.
Then I seemingly find a neurologist who can put a name on the symptoms but tells me nothing and refers me to a pain management dr and a rheumatologist ( both also in his group) and a physical therapist. The pain dr did injections in my neck the the therapist worked my joints wherever I hurt and the rheumatologist gave me Ultram. All of it helped and the Ultram has kept me able to continue working and supporting my family but still don't know any more than what I've learned from sites like this on my own. Then recently the Legislature of Georgia decided to make Ultram  a schedule IV controlled substance and now the dr, ins, and pharmacy are all treating me like a pill head off of the street and making it even more difficult to get the one thing that has kept me going. They tell me I have this thing wrong with my brain but treat me for osteoarthritis, which I have no doubt that I have as well just based on the extremely demanding physical work I have done over the last 35 years. They messed up my prescription this time and cut the amount I was taking in half so now here I am offshore with no way to correct the problem for the next month so after 2yrs of taking the amount of med, that I'm
Used to taking I'm hurting more than ever, I feel awful most of the time. I've been worried that the Ultram has been masking the symptoms from the Chairi but now I'm not sure if it has progressed and that's the reason for heightened pain level or if it's only from dependence to Ultram, I'm afraid of either one of those and don't like not knowing which it is. I already have a terrible time trying to sleep and the added worry only makes it worse. I recently had a complete cardio check up with nuclear stress test and all the bells and whistles because my BP and pulse rate keep going all weird, everything was pretty good but the heart dr said I have an enlarged upper chamber and asked me about sleep apnea(related to the chairi)? I don't know, I haven't mentioned it to my family dr. Yet. I read posts on here and think ,wow, I don't have this anywhere near as bad as most of the people on this site based on some of the things I  read like falling down and being unable to work at all. Then I worry what if I'm just lying to myself so I can keep working because I know I would lose everything I've worked for my whole life if this thing is really going to get worse. Then to add even more stress to the pie I have to worry about any of this becoming a part of medical record and the USCG ending my career because of it even though I'm still performing my duties at a level in the top of my profession. So long way around , thanks for lending an ear to this long winded rant, how am I feeling?
Tired,scared,angry,confused,conflicted,pained,misunderstood,worried about myself my family my future my job my life, I guess that's enough for one man.
So I decided to go the next step today and made an appt. with a chiari specialist in Atlanta today for 7/7/14 . Frankly it scares the hell out me that I should just leave it alone because I'm still getting by each day and that I might be opening a big nasty can of worms that could bring the whole house of cards tumbling down and set events into motion that I'm powerless to control. Ive spent the last 35 years being the guy who can handle anything that's thrown at me but this is plain old kicking my *ss.
So there it is in a nutshell , I guess I see next month, again thanks for asking and stay tuned........
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  No worries....I understand not everyone will be able to pop on here often, as long as u got some helpful info that is what counts.

May I ask how u r feeling?...I pray u are well....and continue to update us on ur progress,.
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Avatar universal
Thank You for your time in responding, I do appreciate and acknowledge your effort. I have only had time to briefly scan everyone's response and it will be several weeks before I have a chance actually consider things in an environment where duty is not factor. At  that  time I may wish to explore some of all your responses in more depth and ask a few more questions. Again Thanks For your time. Capt. Al    
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Avatar universal
Thanks for your time in responding brother, I do appreciate it. I  apologize for the length of time in returning a Thank You. A lot times I'm out of communications range due to work. Your advice is well taken , again thanks.
Capt. Al  
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Avatar universal
Thank you Nina I greatly appreciate your time in responding. I must apologize for the length of time elapsed in acknowledging your response as my duties keep me out of communications range most times. Your advice is well taken and I do appreciate it. Seems I have a bit to learn and some work to do. I hope all becomes well for you in this. Thank you, Capt. Al  
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Avatar universal
Thank you for your time in responding. I must apologize for taking so long to acknowledge your effort. I am an officer of the U.S. Merchant Marine and as such am out of range of communications in many cases. Your advice is well taken and sentiment kind. Thank you again. Capt. Al
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7595610 tn?1397467772
*prescriptions, sorry
Helpful - 0
7595610 tn?1397467772
You need new doctors.  

I'm seeking a third neurologist, at the moment.  I have one in mind, but he doesn't take my insurance.  In any case, my first NL was convinced I was having "age-related migraines"  and threw drugs at me (ultram worked very well for me for a while- always make sure you're checking drug interactions, though.  Especially if you end up having surgery-like I did, in 2011.  Its far easier than you'd think to end up with a bunch of superscription that are completely contraindicated).  My second ML is basically convinced that my re-occurrence of some symptoms two years later couldn't possibly be related to my "neck surgery."  There are doctors out there who have more of a clue, though.  

Just keep looking.  At the moment, I'm trying acupuncture to relieve my symptoms, because apparently nothing is "wrong."
Helpful - 0
4816750 tn?1368804670
I would find a doctor who understands.  I was lucky and found one close to me.  You can do a search for the doctors list here on the forum for doctors.  It is a reference list and in no way an endorsement  for the doctors.  I would start there.  You are at the right place cause this place is wonderful.
Helpful - 0
9027016 tn?1401253009
Hi there glad you are reaching out.  I just recently joined this group and glad I did.  My best advice is to find a dr that understands chiari.  I live in Florida and recently drove to Cincinnati to get the help that I need.  You may have to look outside of your area to find the answers.  I hope your search is successful.   I'm not a dr, but i am a chiarian, and the symptoms do sound like they could be related.  Best wishes to you
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