tingling

[keratza]

Hello everyone

I have a question and I hope someone will answer it. Since 3 weeks I have almost all the time an awful tingling/pins and needlles in my hands and feets and sometimens in my head. I do not have syrinx but I have Chiari (5mm). I have this problem with the tingling since several months but now it s scary. The problem is that I will see a neurosurgeon in Paris, France  but in July. And now I am scary because of this tingling (which is worse during the night and when sitting) and I don not what to do? Why I have these pins and needles and does this mean that I cant wait until July?
Thanks

P.S. I dont have CINE MRI because the doctors in my country dont know how do it

[selmaS]

  If u had not said nething about ur English I would not have known, u do very well : )

To date I have only had one Chiari surgery and I pray that is all I will need.....I had a very good NS and that helps....and I was DX'd b4 surgery with EDS so my NS took precautions, that also helped.

As long as u take ur time to find the right Dr and ALL related conditions there is no reason for u to not have  the life u want, but Chiari is life altering so do not expect to be perfect post op....u may have some lingering issues, but u can have a life : )

[keratza]

Thank you Selma, I appreciate your help - it is all that I need at this moment - someone who understands me and who can tell me relax, you will be ok. But it is also unfair....I am watching my friends and I would like to be like them healthy and happy. I would like to have children to have a full and joyful life. and you know what? I still hope that it will be possible to have such a life, I pray for this. I dont want to think that I will spent my whole life in hospitals and in endless surgeries.
Thank once again, you are wright that more I stress more my symptoms worsen. I noticed that I am feeling more and more ill since I know that I have Chiari.
Sorry for the poor English but  I am foreigner and I ve never lived in USA or UK :) lol

[selmaS]

  I had issues all my life, I went to Drs in grade school, Jr High and High School...no answers....and I went from day one of getting  married....

I was 48 when I had a drop attack....u have not listed this symptom as an issue for u, so that and breathing issues shows it is getting worse....so the numbness and tingling is pretty common as a symptom.....anxiety is a symptom so just tell urself this is bcuz I have Chiari and do not let it take over.

......try to relax as the more stressed u r the worse u will feel.

Take a deep breath and remember to exhale....

[keratza]

Selma,

It s sounds scary lol I hope that it will not be too late for me. I needed just to hear that I m not gonna die :) Because today my foot is totaly numb and is tingling all the time and my heart is racing. I went to see a NS but he didnt help me. I am panicking and I cant stop saying to myself that maybe is too late. Maybe me and the especially the doctors underestimate the situation.
Sorry if I sound desperate - it is the fear and the panic which are speaking

[selmaS]

  Yes, there have been deaths, I lost a friend to this condition as it is not a disease....but this y it is important to have the right Dr, one that is well experienced and informed ....that looks for related conditions b4 surgery.

Many of these horror stories have a few common factors....underlying issues not addressed b4 surgery, the wrong NS, or waiting too long.....

I am not saying u need to rush into things, but there r some Drs that say this is nothing and treat other issues like migraines and ignore the fact they  saw Chiari...and they patient gets worse....and then for some it can be too late....

So the right Dr is key. In ur case find one willing to contact a Chiari specialist over here....they may be able to help ur Dr find u the right help.

[keratza]

Thank you Selma, I will do the lumbar MRI but honestly I am already fed up whit this decease. The last night I woke up and my left side was numb and tingling. I cant sleep but my biggest problem is the fear. I am reading all the day about cases of paralysis and death related to Chiari and I am saying to myself that obvisouly I have something very serious, that something bad is happening in my body and that I will end paralyzed or I will have a heart attack. I read in this forum about a girl who has had tingling and numbness like mines and who is paralyzed now. The worse is that the doctors here dont know what to do and I am alone.

[frankie_rush]

I have the tingling you are having .  I have had it for over a year.  I have had the surgery, they said it is the nerves healing.  It coes and goes in different parts of my body, feels like leittle worms crawling sometimes.  It is relly weird when it happens on top of your head.  I told my wife what it feels like and know when the grand baby sees me scratch my head she will go papaw got worms.

[selmaS]

  U may want to have the thoracic MRI too....as it can revel tethered cord sometimes and that can be a cause of scoliosis....and syrinx's have been found there too.

Glad u had ur levels checked...EDS can also slow  or mal-absorption...so, with the supplements if u feel they r not helping it could be due to a condition like that.

[keratza]

Thank you both of you for your replies. Yes, I did thoracic MRI but not lumbar. The thoracic MRI didn t show syrinx or other problems except a slight scoliosis. My blood tests show that I have iron deficiency (my iron level is 2,9 when the normal level is 10). My b12 level was 498 and the doctor said its ok. I am taking magnesium since 1 month.

[selmaS]

  Hi and welcome to the Chiari forum.

As JC mentioned Chiari can be the cause of the tingling as can being low on vitamins and minerals like Vt D, B12, magnesium and postassium.

Also u said u did not have a syrinx, did the Drs do a MRI of ur thoracic and lumbar spine too? as many only look to the cervical spine for a syrinx, but with Chiari we can develop them newhere in the spine.

To get a CINE, u may want to send ur info to a Chiari specialist here in the states and ask them to consult with ur Drs so they can tell them how to perform a CINE....and get more answers for u.

U should also be ruling out ALL related conditions , tethered cord, ICP, POTS, sleep apnea, ehlers-danlos.....

Many of these related conditions can affect how u feel and heal should u have surgery so it is very important.

[JCappiello]

I have a lot of tingling for over a year now .. My neurologist and neurosurgeon both said it was due to the Chiari... so try not to be overly concerned - its just another "lovely" symptom out of many that Chiari brings... Good Luck with your appointment... Also if you can can a lumbar and cervical MRI to rule out any disc problems.