Scotland ?who are the specialists??

[Guidinglight]

Hi there
Have been diagnosed with CFS 4 years ago, all symptoms became worse so went back to my GP - finally got to see a nurologist, who reluctantly ordered an MRI. I thought I might have had MS because of the similarities in the symptoms i am having, but the MRI report says. Mild Arnold Chiari 1 Malformation with 8mm tonsillar ectopia. With 2 mucus cysts in the sinuses in my cheeks as well. The report says these findings are incidental!!

The neurologist read the report and said the results were incidental!!! but how can they be incidental if they might be the cause of all my misery!!!!

To be diagnosed with Chronic Fatigue Syndrome, All other causes must be ruled out. So If I had the MRI done before the diagnosis of CFS was made would they have recognised my symptoms as being caused by the Chiari or the ectopia???

I want a second opinion??  Any suggestions of any specialist in Scotland. or the UK.

Am I mad for not just taking their word that all my weird symptoms are coming from CFS and that the Chiari is insignificant/incidental!!

X G

[selmaS]

  I flew before my Chiari surgery and I was ok, but for head pressure there is a product many have said was very helpful...it is called earplanes, it helps lessen pressure.....

[Janana1]

Thank you for your advice. I am due to take a 3hr flight in the next couple of weeks. I don't know if it will cause me any problems with my headaches. Is there anything I should do to prepare for it?

Thank you.

[selmaS]

  Hi and welcome to the Chiari forum.

There is a list of Drs on the Ann Conroy Trust that treat and care for those with Chiari in the UK.

Many activities can trigger the symptoms to flare and or worsen...so avoiding them can help how you feel...pretty much listen to your body as to what activities are not good for you....

Lifting, pulling or pushing such as a vacuum ( or hoover) what ever you refer to in cleaning your carpets.....lifting a gallon of milk anything that  causes you to strain.

Relax as much as you can when you are in pain....heat can be helpful....low lighting....I try to avoid fluorescent lights are harsh  can cause headaches....

The pressure is typically caused by strain ...but there are some foods that can help as well....look for anti inflammatory foods....they can be of some help with minimizing some of the inflammation to help the CSF flow better and help with the pressure....

Weather can also affect how we feel...so take note of the weather and also know Chiari symptoms cycle and change so a change could be coming for you.....

[Janana1]

Hi, I have just recently discovered I have  Chiari 1. I was admitted as an emergency to hospital with headaches and high blood pressure. I can't fault the hospital as I had a CT scan followed by MRI. Since being discharged (2 weeks ago) I have been told my case has been referred to Queen Elizabeth University (old Southern General) Glasgow. I have been unable to see a GP for any advice on pain relief and don't know how long it will take for hospital appointment.  I didn't see the consultant again before I was discharged so I'm thinking I can't be a priority however I still have symptoms. I have an anti sickness med to help with nauseous feeling and dizziness but I don't know what's best to take for the pressure in my head and ears. If anyone can advise what helped I would be grateful. I don't know what I am dealing with until I see consultant.

[UndiagnosedK]

Hi Janana, I havent been diagnosed with Chiari malformation but I think I have it. For pressure in head and ears I am trying to put a blend of almond oil with 2 drops of peppermint oil and 2 drops of rosemary round my ear and head. It seems to ease the pain and discomfort a bit. Also remaining still and trying to rest my head in a certain position helps. I read that it is best to avoid salty foods, lifting heavy items, sleeping face down and a long list of other things such as contact sport that I obviously dont do anyway. Im going to avoid these things as there really isnt much info out there. I also live in Glasgow and feel like going to the Gp or hospital is a waste of time. I has an MRI but it was set at a very low resonance and was only of my head. I havent seen the MRI but was told it was normal.I am becoming more and more limited in my daily life but apparently because nothing showed up no further tests are needed unless I make a fuss which makes a person seem like a hypochondriac.I know we are lucky to have the NHS but the system isnt working. People are seriously ill and struggling but if it isnt obvious as to what it is then they just dont care. It wouled be good if there was a specialist in Scotland who didn't charge as going private would cost a fortune

[selmaS]

Hi and welcome to the Chiari forum.

Many of us with Chiari and many other health related conditions were made to feel just like you.....like we are hypochondriacs, or worse just vying for attention.... finding the right Dr is key....and I feel the Ann Conroy Trust list of Drs may help you narrow down the list of possible Drs in your area.
Keep in mind many of us do travel ....I went out of state here and that was a 3 hour car ride one way.....there are others that travel further.

[selmaS]

  Hi and welcome to the Chiari forum.

When posting on these older threads it is possible the member you are addressing your comments to is no longer an active member....but, you can send a PM (private message) to them which generates an  e-mail informing them someone is trying to make contact.

In reading your above post I see you found "one of those" Drs that really does not know or understand how Chiari can and does affect us...do not waste your time with a Dr that is not a true Chiari specialist....you need them to do testing to see if you have a CSF obstruction or other related conditions that are affecting you with symptoms and affecting your overall health.....

Know you are not alone and help is out there.

[emmac27]

Hi there, I've read your post from back in 2010,hope you are well.Can I ask if you were successful in finding a specialist.My doctor is DrJack from the Southern general who also told me my 12mm chiari was an incidental finding exactly what you we're told.He proceeded to try and demonstrate how tiny this problem is by trying to show me the size of a cm!!! I told him not to insult me.However he will treat my temple headaches and fatigue with anti depressants the tablets are called amatriptylin and can make you tired which I've already told him I am as it is.He said this condition is my norm it's always been there and hasn't and won't change or grow.from what I've researched hes ignoring me..I have always suffered a general pressure headaches from certain types of over exertion.my symptoms now that I have pieced it all together have became worse over the last 2 years with vision balance and fatigue along with temple headaches..I've dealt with these things for this length cause I thought it was stress that I had to overcome myself..literally can't think straight or focus some days.I thought all my problems had been addressed under the one umbrella but apparently not.so how can we apply logic link our symptoms with the ones we are told link to this condition backed up with an mri which shows dangly bits not where they should be..with not the slightest reassurance from the doctor that they will acknowledge ur condition/symptoms regulate appointments and don't downplay this potentially serious condition.

[selmaS]

  Hi and welcome to the Chiari forum.

This is an older thread and the member you addressed your comment to may not be an active member, to let them know you are trying to communicate, send a PM (private message) that will generate an e-mail indicating someone is trying to make contact.

  You may also want to create a new thread and ask questions the active members will respond to.....know you are not alone.

[Woodburner]

Hi Guidinglight, I too live in Scotland, I've seen a neurologist, had an MRI & received a letter saying I have a mild chiari type 1 malformation but it is incidental. It says I will be followed up , but I don't know when. How are you getting on & how was your appointment with Ms Brown, I know it was a while ago , but any advice would be appreciated.
Thanks x

[*Stormy*]

I'm so sorry to hear that you are getting the run around and dealing with ignorant Drs..

Unfortunately, for a huge majority of us, that is the case as well.
They thought it was MS with me too especially when it started to affect my gait. The wait list here was HUGE for MRI's so I actually ended up paying for my own and then was told everything was normal. My Chiari wasn't just listed at incidental...it wasn't mentioned at all..by the Radiologist or my NL (even though I suspected he knew). I went for 6 months rapidly spiraling downward with no clue as to what was wrong with me...miraculously, I came in contact with a NS in my personal life who offered to take a look at my scans. He dx my Chiari and I had surgery within 3 months b/c by this point it was urgent. I did question my NL after the dx and he admitted seeing it on my scans but told me that usually it didn't cause any symptoms. I couldn't believe that he felt he could make that decision when he saw the state I was in!!!

So the reason I am telling you this story is b/c I know how hard it is but you HAVE to advocate for yourself or you won't get anywhere. The only person that is really going to be able to help you is a NS..because it is in their field and they will have more knowledge about it. Still, you have to make sure you find the right one b/c some know more about it that others.

It is ok to curl up and have some downtime...every time I was knocked down (and it happened a lot) I had to do that too..but then I picked myself up and started again. I knew my body and I knew that something was not right and that it was NOT in my head!!

I wish you all the luck with this NS...I really pray you get the help you need! Let us know how it goes.

Carolyn

[Guidinglight]

Thanks so muc for the Welcome and the  info.  Got An Appointment to go see Ms Brown at the Southern General Hospital, Glasgow on the 30th August.  I am Back at work after 5 months off but really struggling, i am so tired, My body hurts all over, The Dizzyness is a total pain and the headaches are getting worse. I am so slow, and my coordination and memory are not what they were. Im really trying to stay at work, but I just dont know if I can keep it up.
The truth is I really feel that my job is having a negative effect on my symptoms, I was just managing to live before going back to work, but I needed to go back to work due to financial pressures!! Im sure you know what I mean there!!
I dont even know if it is actually safe for me to be at work or if there are any limitations that I should be observing, I am a nurse in a Elderly Medical ward and it is very physical and constant.
As a nurse I am frustrated that I am having to do all my own research and Info gathering, I am very annoyed that my GP's only comment was I dont know anything about your condition!! If I come across a patient with a condition that I dont understand then I go research it so I can understand them, and I guess Im pissed that I am not getting the same from my health care providers.
Just feel like curling up and dying at the moment, which is odd because just a few hours ago, I felt not to bad. My head is spinning more and more since turning on the computer, so need to go take a break. XX TTFN Gail

[max666]

hello,my name is maxine and live in birmingham england. Aswell as this forum i have found another one on an english site which is also quite helpful. The Ann Conroy Trust are doing alot of research into this condition, they have their own web site. I looked on there for you and it shows 3 drs that might be of use : Mr R Johnston and Ms jennifer Brown who both work at the Southern General Hospital in Glasgow and a Mr David Mowle who works at Ninewells Hospital and Medical School Dundee. Dont know if these are places that are accessable to you but hope the information will help. Im on facebook if you or anyone on the forum would like to add as a friend.

[selmaS]

HI and welcome to the Chiari forum.

Ray is sooooooo right....u deff need to proceed slowly to get all the information possible.
I do not know how u go about getting a Chiari specialist in Scotland....but Ray has a great idea.....

There r other tests u need to have done b4 ne one can say ur chiari is mild....it is never incidental unless u have no symptoms, CSF blockage or overcrowding...even then u would still need to monitor it.

U should have a CINE MRI to determine if u have the CSF blockage as it is one of the major issues that cause most of the symptoms along with the overcrowding.

We can offer support for ur symptoms and ur chiari journey...we r happy to have u join our little family here, but so sorry for the reason u had to seek us out.

"selma"

[authrjenn]

get a second opinion. I lived in greewich and had great care. good luck

[rod44]

Hi and welcome.


NO YOU ARE NOT MAD

Even you were under the care of the wonderful Doctor in the world you would need to proceed with caution. Chiari Malformation is a very misunderstood condition among the medical community. You will need to find a neurosurgeon who has Chiari experience, this is not easy when most dont know enough about it, a bit of a dilemma.
I would suggest getting on the phone and ringing Teaching Hospitals across the UK asking if their hospital treat CM and how many they treat annually.

Ray