4-5mm symptoms??

[Blueghost]

Hello all, I recently had an MRI and it showed 4-5mm Chiari Malformation. Im a 28 y/o man. I had no symptoms until I stopped drinking alcohol last year and went into withdrawals. During the withdrawals I had the usual severe anxiety. Ever since then iv had this internal restless/grinding/pressure-hard to describe feeling in my shoulder and neck, but only on the left side. For the first 6 months after drinking I had balance problems, but they have pretty much resolved now. My symptoms come and go, they are not always present and sometimes I feel totally normal. Im trying to figure out if my symptoms are related to Chiari or from a CNS recovering from alcohol abuse. My Doctor said 4-5mm herniation couldn't cause any symptoms and the fact they the symptoms come and go says its not chiari related. However, due to personal experiences, I dont trust doctors so much. Does anyone have any experience with  4-5mm herniation?

[selmaS]

  Hi Louis, welcome back !

We can not post e-mails on the public forum, but we can answer u right
here : )

It is very possible to have Chiari and not be a surgical candidate and have other issues that r causing the symptoms....this is y I am so adamant about getting all the testing to rule other conditions out b4 u consider surgery as it is a major one, and u can end up feeling worse post op and still have the other issues and it was not the chiari to begin with....

I would still have ur chiari monitored to make sure it is not changing in size, and especially if u develop new symptoms, have it rechecked.

My DD's MIL has Lymes so I know how debilitating it can be...and she has flare ups from stress related issues just like we do with Chiari so in that they can be similar.

I am not sure about the other co-infections...I am not familiar with those....and I am not sure we had neone with this situation b4.....but know u r not alone and can continue to post here, we will offer support ne way we can : )

[LouiP]

Hey guys,

I have a 5 mm ACM but on an MRI showed my spinal fluid flow wasn't blocked. My spinal tap also revealed normal pressure even during coughing.

I have instead been diagnosed with Lyme disease, babesia and bartonella as co infections.

My head hurts constantly.

I am really just lost trying to put it all together. If anyone has a similar story or can shed light on mine, I'd really appreciate it.

My email is ***@****

Thanks,

Louis

[shanmomof3]

i was on effexor years ago after my 2nd child was born. Lexapro has been my favorite but because of insurance now i take Prestiq. It works pretty well, but i still like Lexapro the best. And i completely understand not takin the meds unless necessary but you also know if you wait too long it wont help. Kinda like pain meds.

[Blueghost]

I have Ativan and Klonopin, but I only take them as a last resort---maybe once a month. Effexor does work for anxiety too, have you tried it? It was a miracle for me.

[shanmomof3]

sorry its Ativan not antivert. Brain fog this morning lol

[shanmomof3]

my insurance did but i have aetna so i dont know about BC/BS. Oh, i forgot to say anything about the anxiety. Mine got really bad before surgery and i have Antivert but i only take it if i need it. Its not as strong as xanax, but effexor is not for anxiety its for depression. Big difference!

[Blueghost]

Thanks, Anxiety is nothing new to me, iv always been a nervous person. Also, this is sadly not my first alcohol detox. The first one in 2004 put me into a severe anxiety state for about a year. Effexor XR cured me, but have not tried it yet again.
Shanmom, thank you so much for the reply. Did you insurance cover this? I have BC/BS of AL and not sure they will cover an out-of-state visit or operation.....

[shanmomof3]

Hi blueghost, we're neighbors lol i'm in mississippi. First of all congratulations on your sobriety! I'm 4 weeks post op and although i'm still recovering i can already tell a difference and would absolutely have surgery again! For years my symptoms "cycled" or came and went like you described, but for the past year they have been pretty constant and did nothing but get worse and worse. Oh, and my herniation was only 4mm, but i had severe overcrowding and my csf was almost completely blocked. You definately need a chiari specialist! Now i ended up going to the chiari center in wisconsin, but that was a personal choice and i got tired of the run around i was getting here and i went to memphis, jackson, and birmingham. I'm not saying there's not a good dr locally, that was just my experience and i want you to be prepared! Hope some of that helps :) Please feel free to ask any question here. Blessings ~ Shannon

[*Stormy*]

Welcome to the forum,

Just wanted to say that my symptoms cycled for months b4 they became permanent. I recently had a NL try and tell me that isn't how it happens and I was like ..it happened that way to me. Then I was told that my case was a rare occurrence..not so. They just don't know enough about it..I believe when you do some strenuous activity then you can cause the symptoms to come on worse and then it can get better again. Of course, for most of us, at some point they just don't go away.

I am glad that you are in the process of finding a specialist.

I had issues with anxiety too b4 I knew of the Chiari..I tried Prozac, Zoloft, Wellbutrin..all that caused bad side effects and never really helped the problem. I now believe that the only thing that really did was having the surgery. I have some bouts with anxiety now but nothing like I used to.
However, panic attacks are awful so maybe you should get some Ativan to help if that happens?
Best thing for me is to concentrate on breathing from my diaphragm and breathing out to the word "relax". Sounds crazy..but it helps for me.

Good luck
Carolyn

[selmaS]

Hi...many of us have anxiety issues...it is a result of brain stem involvement.....I was dx'd prozac yrs ago, it was not something that made a difference for me.

[Blueghost]

Thank you all. Im going to try to locate a Chiari specialist this week and get an appointment. Has anyone had any luck with antidepressants? Anxiety is still a big problem of mine.

[denverluv]

I can totally relate to not having symptoms untill you got sober. That was the one thing I kept telling the doctors- I knew my body had to recover from being an addict and an alcoholic, but three years later and I feel worse?  How long has it been since you quit drinking? I would say if i has been at least a year and you are still having issues, then yes I would seek out a Chiari doctor. But think of it this way too, you could have been having symptoms the whole time you just didn't feel them and the alcohol withdrawal is def. a horrible thing to go through, so you wouldn't have noticed them at the time. I always found it a little weird that I had NO symptoms while I wasn't sober then as soon as I got sober I did? No- I think I had them the whole time just wasn't aware because of all the other issues you go through while being on drugs or alcohol. Def. find a Chiari dr., and I 've also learned to not bring up that part of my life unless asked. You can get a biased opinion if you are open about that. Not the way it should be, but it is.

[Sweetpea32]

I had 5mm CM, i had symptoms off and on my whole life. But no one diagnosed me till last July of 09. I have had decompression surgery (11-09) and yes it did help with the pressure and majority of the problems i was having. I still have some off and on issues typical CM symptoms. The recovery from surgery is a job in itself. but I do not regret having surgery. Everyones different with CM and everyone heals different. like Selma said, find a CM specialist, one that really knows the condition and diagnosis, then you will in good hands with a good NS.

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

here is a list of drs for u to research...u may have to travel as the list  is not that big, and it is only drs that members here have been to and liked.It is a good place to begin ur search for a dr. I had to travel out of state to get to one.

We have a list in the Health Pages on anti inflammatory foods to help with the pressure....and there is a list of activities to avoid  to lessen the onset of HA's.

I feel my surgery was a success as I am doing well....I can say that many of my symptoms that were quite debilitating b4 surgery have calmed down....it can take up to 2 yrs to heal so I am halfway there.....I do have a few other issues to deal with that r related but we have to understand there is no cure for chiari....and it is possible that if u already have nerve damage that u may continue to have symptoms from that...surgery may not relieve all symptoms as it is not a cure, purely a means to slow progression....and hopefully avoid the development of a syrinx.

"selma"

[Blueghost]

Thanks all for your replies. Has anyone ever had successful surgery? Iv been looking but all I can find is horror stories. Also, is there any hope without surgery, i.e. medications to lower CSF pressure ect? I live in Hong Kong, but have taken a rest back in my home state of Alabama. I want to find a Chiari specialist but I am unable to locate one in Birmingham, AL so far.

[northernstarmn]

Blue- i can tell you YES you do have symptoms at 5mm....each person is different in how Chiari affects them but then we all become the same eventually... I'd find myself a Chiari doctor....Oh BTW I was a 5mm herniation had awful symptoms- and Had the decompression surgery....while some ppl have much larger herniations and their symptoms are minimal...so it all depends on the person, also its not the herniation that is taken in account as much as it is the blockage.

[selmaS]

Hi and welcome to the Chiari forum.

The problem u r dealing with , is the dr is not a chiari specialist and is of the mind that chiari is an incidental finding. A true chiari specialist will agree that a herniation is not the issue to be concerned with, it is CSF blockage and overcrowding.....which u can have with a 0mm herniation....most drs will recognize a 5 mm herniation but like I said it is not the size of herniation that will determine if u have chiari symptoms or not.

It is also possible that u did have symptoms b4, but that u were not aware of them or noticed them....we do have other members that can share similar issues with u.

Chiari symptoms can cycle...so, issues like balance can appear to go away only to reappear later on.

I can not tell where u r from, but we do have a list of drs that u can look thru and research to find a dr that is well informed on chiari.

Glad to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"