Aa
Aa
A
A
A
Close
Avatar universal

Is there any case where symptoms subsided even years after decompression?

Hey, im currently 25 and 4-5 years ago i started to have a bunch of crazy symptoms going to a bunch of specialists.
My vision is deff getting a bit worst. I have 20/20 in both of my eyes but i have a bit of strabismus and blurry vision. My heart rate increases as soon as I move (it has gotten better as i was diagnosed with POTS and it has kinda gone away) i also have difficulty swallowing. My main concern is my vision and a few headaches i get once in a while. As soon as i see a computer or a phone too long there is no way i can focus perfectly mid to long range. All i hear are horror stories after the surgery and no story of peoples symptoms getting way better after a few years. I can live how I am now, im just scared that my vision keeps getting worst. I have complete forgot about the chiari until recently that i lost sensation in both of my arms and legs and almost fainted after going to the gym. Im scared that if i do decide to undergo with the surgery i will not be able to go to the gym or that my symptoms will get better. Any word of advice? Im seeing a neurosugeon in cleveland clinic here in weston fl who supposedly specializes in chiari too. I have seen on eor two cases where people really improve their quality of life after the surgery, but there are way more horror stories out there. I can only dream to have this vision problems go away.
1 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

I had surgery 10 years ago this May....and I am doing better.....and it can take time to see ALL the benefits due to  related conditions you may have.
Having the right Dr is KEY !!
Have you had a CINE MRI? The numbness can be due to a related condition Syringomyelia....a syrinx(cyst) forms and fills with CSF and puts pressure on the nerves in the spinal cord which can cause numbness,,,,
Most times and which was the case for my surgery I had a CSF obstruction and had surgery to prevent a syrinx from forming....
You will also want the Dr to rule out ALL related conditions as they can affect the outcome of surgery.....if the Dr is not a true Chiari specialist ( but does the surgery) they will not check you for them and will also say they can fix or cure you....if you have a Dr tell you that RUN...there is no cure for Chiari as it is a malformation of the skull, but it can slow progression and lessen some symptoms.
Many of those that have gotten worse post op have had related conditions not found prior to surgery.
Educate yourself on Chiari, ALL related conditions and the Dr you choose to go to.
Helpful - 0
10 Comments
The doctors name is dr badih adada in weston fl. Supposedly he is known for that procedure. Yes i have a cine mri done 4 years ago as well as an mri and did not show any blockage, however as time progressed, my vision is getting really messed up. Pots kinda went away and im now at innapropiate sinus tachycardia when i move a bit. I feel pressure on the back of my skull when i lean over and my memory is kinda bad, i need to think really hard to remember what i did yesterday or two days ago. Anyways i hve an app with the doc on thursday now. I just want to feel like i did a couple of years ago. Im just 25 i do a bunch of extreme sports i surf etc. I have no recollection of when and why the symptoms started. I’m very away of chiari i have read for many hours a day about it. When i see the doc im going to ask him so many questions hes gonna hate me lol
Make sure this Dr only does Chiari and Chiari related surgeries to have a true specialist, if they do not check you for Ehlers-Danlos they are not a true specialist.
How were you treated for your POTS that your symptoms diminished? Were you checked  for IIH?
Well I honestly had my first diagnosis back in 2015 that said i had chiari malformation, after that I went to mayo clinic and they didnt do a tilt test but said I definitely had pots. I went to UM and basically said that vision problems and all of my other symptoms are not enough for operation and suggested I come back basically when I was unable to walk haha I was really marked by those words. Anyways after a few years I tried to do my life normally, eat well and exercise, before my hr would go up to 130 upon standing and now there are days that stays at 80-90. However I was diagnosed with some level of dysautonomia, the doc says I have these spikes with minimum physical movement (innapropiate sinus tachycardia) I was wondering if out of all the cases you have read on here you have heard of people having these weird heart related symptoms. which is baffling for the doctor is that after echo and every test possible my heart is perfectly healthy, so it has to be the chiari causing this issue apart from my difficulty swallowing, headaches, balance issues, and vision problems which have gotten much worst, I also notice my cognitive abilities have decreased a bit, and when I need to concentrate at work for long periods of time, I definitely get headches and feel more dizzy then ever. I really doubt I have eds sinse I have always been the opposite of flexible Im as stiff as person can get. Anyways next week I have another MRI to check the status of my chiari since the last one was in 2015 and seeing two NS one called badih adadda in cleveland clinic and the other called Linda Sternau here in miami as well. I have a good feeling and I'm positive my symptoms will get better after surgery and I will be able to form a family and see better again, I just need to talk to the NS to see what they think its best. Its funny that I found out my herniation was already at 9mm in 2015 and no one seemed to give a crap, I just pray to god that it hasn't gotten much worst.
Although ive been researching and heart problems, vision problems and swallowing problems are all related to eds too but chiari too. But like i said, i have done contact sports all my life and never had problems with joint injuries or scarring problems so i really doubt i have edd, i will consult it with my NS when i see him next week. If we rule out all of that i will most likely decide to have the surgery to inprove my quality of life.
I know it is very discouraging to do research when there are related conditions that cause the same symptoms so it is near impossible to know which condition is causing which symptoms. However, I too had issues with my HR and since my decompression surgery no longer have that issue and I do have EDS as well.

EDS is not being flexible but having a larger range of motion....I know sounds the same...BUT I too am very stiff, tight and can not move and had resisted the possibility that I had EDS for that reason....and again I will say BUT, it is because our muscles step up to do the job our connective tissues are not doing and they work so hard to help hold us together we are tight...stiff...but if you had a PT tech moving your joints they would be able to move them very far on the ROM scale and it looks like we don't have an issue, but alone we can not get that ROM as out muscles are too tight.

Since you are in Miami have you looked into Dr Green? I believe he is down there and is listed as a Chiari specialist.

Keep in mind, ,quality of life can diminish post op too, having the right Dr is key and ALL related conditions must be ruled out and worked with if found.
I will definitely ask my doctor, but most people are more flexible and have better range of motion, i cant even scratch my back properly and i barely bruise, i say this because since i have done motocross and a bunch of other sports including soccer since i was a kid and i have never had intense bruising and never dislocated anything, the only weird thing is that my scars are a bit darker than my normal skin tone, but apart from that i have nothing related to all the commom symptoms. I never saw dr green, i saw a neurologist that worked with him and since the cine mri a couple of years ago showed no blockage he didnt even want to see me :/
Oh I know, I said the same thing....I did not see myself as flexible ...but I did bruise easily, and was slow to heal....but I didn't feel I was fitting the EDS criteria...but I do....

Without a blockage there isn't much a neurosurgeon can do....they do surgery to restore flow when there is a blockage....but, I would hope they tested for ALL related conditions.
Yes definitely, i do have kind of elastic skin in my neck, a bit more than most people around. But my fingers are stiff and like I said if I really had ehler danlos i would have broken something or had problems with my joints, but being an athelete in high school, surfing playing soccer and doing motocross never came across any problems, i do heal pretty fast, the only problem like i mentioned was darker skin in the spots When i heal from a fall while skating or something like that. No family history or eds, my grandparents are around 80 without complications with skin or any joint problems. My dad did pass away at 43 of a brain anneurysm and i did found research that tied eds and anneurysms, thats why im a bit uneasy and uncertain if i do have some hidden, vascular form of eds, ill have to wait and see what the doc tells me. What are your eds symptoms that are present after decompression? My vision and tachycardia, palpitations are definitely getting worst with time, i wonder if its my chiari pressing down on my brainstem. Another thing i wanted to point out is that, if i do have eds why dindnt i hve vision peoblems or problems swallowing, tachycardia and all that when i was younger? Thats why i tie this problems to chiari instead of the possibility of being eds.
Now that i hve researched more i can really say for certain that my skin is VERY stretchy in my tricep area, neck and face :( now im concerned.
Hey selma, i woke up last night with a burning sensation in my arm not feeling my pinky and other finger. Is this common in chiari patients, it really scared me, i still have it a bit numb, the feeling is similar to hitting your funny bone
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease