Swallowing getting worse.

[Lyn090761]

Hi everyone,
I'm a 51 yr old mum of 2 teenage boys from Queensland in Australia.
My Chiari Malformation became symptomatic after whiplash from a MVA in 1999.
My main symptoms are severe cough headaches and chronic pain in my neck shoulders and back.
It took years for me to be correctly diagnosed and I can not believe the number of doctors (GPs and ENT specialist) I have seen who have little or no knowledge of this condition.  Soon after diagnosis I saw a neurosurgeon who explained the surgery but thought it was too much of a risk when I had quite a good quality of life.
I have been diagnosed with other things as well along the way (fibromyalgia, carpel tunnel, sleep apnea, psoriasis, arthritis, depression). I've become pretty good at "soldiering on".
I can't help but think these various conditions are related ????? But no doctors have joined any dots.
In the last couple of years, the sleep apnea has become worse. My swallowing is also becoming harder. I feel like my throat is obstructed, and closes over or sticks together. I sometimes choke on things which then brings on the really bad cough headaches. Could these changes be from the Chiari getting worse?
My GP thinks a lot of my symptoms would alleviate if I lost weight and exercised more.
Not sure what to do from here, so any feedback would be appreciated.

[frankie_rush]

Lynn,

I did have the swallowing problem before surgery and it has went away after.  It dows scare you and gets embarassing sometimes.

[selmaS]

  U will need to see a NL (neurologist) at some point but u need to find one that is well informed on Chiari and related conditions,

ICP= intracranial hypertension or excess CSF build up/pressure...a LP (lumbar puncture) is done (with care) to determine if the pressure is from CSF...they look at the opening pressure to help determine this DX.

POTS=Postural orthostatic tachycardia syndrome  is a condition of dysautonomia, to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively.People with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many also experience symptoms when stationary or even while lying down. A tilt table test is used to DX this condition.

EDS or Ehlers-Danlos Syndrome is a connective tissue disorder, amny with it may  have easy bruising, slow to heal,and hyper mobility or double jointed.... and may have issues with mal-absorption of vitamins, minerals and even issues with anesthesia, drugs and foreign matter.....so it is very important to know if u have this b4 considering surgery where a dura patch of foreign matter may cause more issues post op.

We do have a list of Drs in Australia for u to use to research Drs, I have no idea if ne are near u....go to the Health Pages for the list- http://www.medhelp.org/health_pages/list?cid=186

[Lyn090761]

Great to get your reply, selmaS. Thankyou so much. After a sleep study, I have had 2 surgeries inside my nose for my sleep apnea, to get a better nasal airflow (which he always ensures as the first step). Then had sleep endoscopy while under GA which showed the main problem to be my throat (very wet and flappy tissues and kind of sticks together and makes a clicking sound). Had a mouth splint specially made to hold my jaw a bit forward so tongue didn't block my throat. But I couldn't make it work for me, as I felt like I was choking with it in my mouth and had panic attacks and kept having to pull it out. My general health care is just with my family doctor, so don't see anyone specifically for Chiari. Would a neurologist be the person to see to look into the things you mentioned? (By the way, what is ICP, POTS and ahlers-danlos?) I live in a regional town now, but a neurologist visits each month from Brisbane.

[Lyn090761]

Thankyou for your comments and words of support. I feel like a hypochondriac when I talk to regular folk about this stuff. I hope surgery brings you relief from your symptoms.

[selmaS]

  Hi and welcome to the Chiari forum.

As Sophiasmommy mentioned above they are indeed related to Chiari.....Sleep apnea is something we tell members to be tested for, especially Children  as they can not communicate what is going on, we know if we r having issues with breathing,....and I know ur frustration as so many feel sleep apnea is a weight related condition like ICP, but far too many with Chiari that are as thin as a rail have these same issues....they need to start looking outside the box they surrounded themselves with while in med school.

Many of us took yrs to get a DX as well, and have gone so long with symptoms we were not aware they were symptoms......but again as mentioned above breathing and swallowing issues need to be dealt with asap....talk to ur Drs....

Surgery is not a cure or a fix, it is to restore CSF flow that can cause so many of the symptoms....u need to find out do u have a CSF obstrcution, do u have ne syrinx's....cervical, thoracic or lumbar spine MRI's are needed for that, then rule out tethered cord, disk issues, ICP, POTS, and ehlers-danlos.....check vitamin and mineral levels.

There is a member from Australia that is trying to get more awareness out, as she did lose her son, and it was breathing issues post op, he was not on oxygen...and with ur sleep apnea I would make sure u r put on oxygen for a time post op.

Loosing weight with a condition like Chiari is not easy, especially when u have aches and pains they mis-dx as fibro....as so many of us are told we have it, but later find it is the EDS that is causing the pain....and it all prevents us from doing the amount of exercise that will have an effect on weight,.....

I had breathing issues, not sleep apnea, but issues from the time I was very little that at age 7 I had my tonsils and adenoids removed....no improvement,....but I do see improvement post op from my chiari decompression....and that was at age 49.

[SophiasMommy0603]

Fibromyalgia, sleep apnea, depression, and arthritis all go hand in hand with the chiari as I have been diagnosed with all of them as well and asked my chiari doctor that question. I take a muscle relaxer for the fibro/arthritis and as for the depression I don't wanna take any meds because I'm hoping decompression surgery would help that (hoping to get my quality of life back) so right now i go to see a psychiatrist once a week. If the swallowing and apnea are getting bad you should speak to your chiari doctor as I've read that can be very dangerous. And I give you credit for living with this for so long! My pain came on suddenly a few months ago and hasn't left or lightened up for even a day since!