stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u r feeling so poorly, this condition is one that can make it frustrating to get answers...especially since it is Drs that understand and know how to treat it that seem to be the only rare thing about it as there r far too many of us for this to be a rare condition.

As far as symptoms getting worse as u get older, it is possible, it all depends on what symptoms u r dealing with and how ur chiari is affecting u and ur overall health. It is also possible that ur symptoms may not change from what they r now.

Too many Drs say Chiari is insignificant some do not even bother to tell the patient they have it....so, I understand how u feel... unfortunately we  do not have a list of Drs in Africa...I do recall having a member from there, I will look to see if I can find that person and mayb u can see what they did , who they went to etc...

[Casscarez]

Hi,
I have just been diagnosed with ACM 5mm. My neurologist dismissed the ACM as insignifiant as soon as he read the radiologist's report of my MRI but after lots of reserch I think I have finally found a reason for feeling so awful for so long. I would like a second opinion but I am South African and am struggling to find a specialist here. Can anybody help?
Also I am only 22 and would like to know if I can expect all these weird symtoms to get worse as I get older?
Thanks

[selmaS]

  Hi,....I had a feeling they did not open the dura for u....and  symptoms returning at 3 months is typical....but, it should not last and not be as severe as per op....

I am 3 yrs post op and I am much better then I was b4 my surgery and I did have my dura opened.

I also had a chiari specialist that made sure to look at all related issues first, and found I do have EDS, so they used my pericardium for my dura patch.....

  With EDS I heal slower then most and I can say I am much stronger now then I was 4 or 5 yrs ago....so my surgery was a successful one...do I still have issues...yes, I do, but they r manageable....and some r due to other related conditions I have ....not all chiari....so this is y it is important to know.

  May I ask did u have a MRI post op?

Please get the opinion of a Chiari specialist....u r in NY and I know up state but it would be worth ur while to travel to Drs that know how this affects us....

I am so sorry u had to leave ur job, but so did I as I could not go back after  my surgery...it takes longer to heal and not  the time line that many expect us to bounce back,.....

  Hang in there <3

[cfinniss9]

hi Selma thank you for you quick response i appreciate it.  i was diagnosed Oct. 2008 with Chiari with 7mm tonsils and severe CSF flow problems and the severe Chiari headaches.   i had my decompression surgery Jan. 2009.  Many of my symptoms went away for about 3 months then little by little they began to come back.  My CSF fluid was flowing better but still had disruption of flow to certain areas of my brain and still have crowding in the foraman magnum area.  i had my surgery at St. Joseph hospital in Syracuse NY by Dr. Craig Montgomery.  he did a craniectomy and lamenectomy but did not open my dura.  he told me that if the first surgery did not help me then i could get a second surgery where they open the dura and sew a patch in it making more space for CSF flow.  I have not had the second surgery where they open my dura because they cannot guarentee that it will help me and said it can even make me worse off than i am. my symptoms now include severe neck and shoulder pain, Chiari headaches when i do activities getting my heart rate above 130, when i strain, when i cough hard, when i lift heavy objects and when i sit in one position too long such as staying on the computer too long or just sit still in one position too long.  i have to be able to move around a lot and change my positions or get up and walk around etc. i have tingling in hands, lower legs and feet all the time and depending on what i am doing feet go numb such as if i walk for a while they go numb or pins and needle so severe and very painful.  i have face pain, burning sensations lower legs feet shoulders and down arms on and off. pulsetile tinnitus and loud ringing in ears also.  unsteadiness - loose balance a lot sometimes just standing and i tip over.  i experience the episodes i explained in my last post where it feels like brain starts buzzing and i feel as thought i am passing out - feels like brain is short circuiting.
have problems with slurring of speech and forming words on and off.
Concentration problems and sensitivity to loud sounds.
eye problems - blurring, flashing lights (fireflies) and the muscles in my thighs in my legs weaken on and off making it difficult to do stares when this happens.  
i have Graves disease, Osteoarthritis in all my joints, degenerative disc disease in c-spine and lumbar spine causing a lot of pain and bulging discs in c-spine.  i have Fibromyolgla, and GIRD.
I am on Tramadol for pain, Lyrica for Fibro, Celebrex for Osteo, Omeprzole for GIRD, Ametriptyline low dose for headaches, and helps me sleep better.  flexerall ad bed times so muscles will relax. estradiol very low dose because i had a total hysterectomy in 2000.
I also use topical pain cream on shoulders and neck when i am in a big flare up. Levoxyl for hypothyroidism because they did RAI treatment to kill part of my thyroid because of the Graves disease (hyperthyroidism) which pushed me into hypothyroidism.  i still get flare ups on and off with the Graves disease.

anyway pretty much feel like a mess.  but the meds help a lot.  they make it so i can at least function daily.  I can't do the things i used to be able to do but i can at least function.  off the meds i cannot even function.  
so that about sums it up.  i have been considering going to the Chiarra center in Long Island as the doctors here do not know very much about Chiari and do not seem to understand all the symptoms that can come with Chiari besides the headaches also because i am having bladder issues and was worried about tethered cord but doctors did MRI of lumbar spine and said they did not feel i had tethered cord and i am seeing a urologist who did the test to decide if i had Neurogenic bladder and he did the test and says i do not have that even though i have most of the symptoms of Neurogenic bladder and he wants to do a procedure (surgery) to help prevent loss of urine.  but i have not decided to let him do this yet.
anyway that about sums it up - I am functioning by taking my meds and doing my stretches and neck excercises and being careful what i do being careful not to overdo it or i end up in bed.  i am not working because my job consisted of me sitting at a computer all day long and multi-tasking big time and i can no longer do either because of my condition.
write back when you get a chance.  Thanks Selma

[selmaS]

  Hi and welcome to the Chiari forum.

I did have issues similar to that b4 I had surgery...not so much post op ne more.....I did have drop attacks, but there is no warning ahead of time with those.....

Have u had a MRI post op? How long since u had ur surgery? It is possible to have scar tissue or a related issue that may be causing this.....

When u had surgery, what all was done? Do u know if ur dura was open and u had a dura patch?Did u have a laminectomy?

  Lastly, was the NS a chiari specialist? And what   has ur Dr said about this flare of symptoms?

[cfinniss9]

has anyone experienced episodes where all of a sudden it feels like your brain is buzzing and you get very weird sensation and feel like you are ready to pass out then feels like blood totally drains out of you from head down then feel confused for few minutes after.  Very scary.
i used to get these episodes before my Brain Compression Surgery and they went away post surgery but now they have returned...let me know if any of you have experienced this.