Follow up

[sxsxsx]

  I go back to my neuro at the end of July for a follow up. I have a very strong premonition that he is going to dismiss all of my symptoms again. How do I make him listen. What made me go to the doctor to begin with was these horrible vertigo spells that can go on for days. They don't last the entire day but I can get them every 10-15 minutes and they last for just seconds at a time sometimes longer. I get them when I drink water, eat, walk, look up, go up stairs, look down... the list goes on and on...I have also noticed that if I tilt my head a certain direction I feel additional pressure building up in the back of my head (mainly at work). I think it has to do with how my computer sits on my desk. I know there is no cure for what we have I don't want to push surgery innless I need it but I'm super uncomfortable living like this. He has only done one MRI of my head and nothing else. According to him I shouldn't have any symptoms.My last MRI showed a hernation is 6mm. He said my headaches and vertigo shouldn't be happening, I'm almost afraid to go back. Any suggestions would be greatly appreciated!


P.S. I forgot to mention the headaces are a little better but I still get marathon they just go on for days and days...

Thanks everyone for your support!!!!

[selmaS]

  Well the nurse tried it a few times not just once on each area as it is possible to loosen the tendons to allow the flexion..I felt there was no way I could no ne of them...and the only ones I could not do were the palms flat on the floor with straight knees...I scored a 7.

Be hyperflexible and double jointed may seem like the same thing, but they r not....but many they r double jointed r hyper flexible as well.

Ur dr may want to do more testing since ur score puts u in the moderate level.

     "selma"

[sxsxsx]

According to this test I scored a 4. I can do one and two. But I was told I was double jointed, my son is the same way.

[selmaS]

  The list is compiled by the members here of Drs they have been to and liked...some r true chiari specialists some r not...just NS's that successfully treat chiari.

This is y I say it is not meant as a referral, but a means to help u research Drs...u have to find the one that is right for u....just bcuz the dr was well liked by one member does not mean u will like them...u have to feel confident in them too.


There is a test most NL's can do in the office to determine if lab testing or a geneticist is the next step-the Beighton test and the score u receive will determine if the next steps r warranted.
Beighton Scale Tests

   First of all, congenital laxity can be a major, major problem from a medical perspective.  Movement-based and athletic implications aside, hypermobility may not always be benign.



The Beighton Scale, which I learned initially as the (Mariano) Rocabado’s Hypermobility Screen is as below with an interval scoring system.

1. Extend the first finger (2nd digit) over the back of the hand—if 90 degrees or greater score:

1 point left
1 point right

2. Flex the thumb toward the forearm—if the thumb touches the forearm
Score:
1 point left
1 point right

3. Extend the arm—if 10 degrees or more of hyperextension at the elbow
Score:
1 point left
1 point right

4. Extend the leg—if 10 degrees or more of hyperextension at the knee
Score:
1 point left
1 point right

5. Flex at the waist—if you are able to touch your palms to the floor score:
1 point

Total your points and compare below:
1-3 points—low flexibility
4-6 points—moderate flexibility
7-9 points—high flexibility


Your doctor will likely begin with a complete physical examination and a careful recording of your medical and family histories. Extremely loose joints, fragile or stretchy skin, and a family history of EDS is often enough to make a diagnosis of EDS.

Sometimes, additional tests are ordered to confirm an EDS diagnosis or to determine the type of EDS you have. They include:

Genetic tests. If your family's genetic mutation is already known, a DNA test can confirm vascular type EDS. Prenatal DNA testing and preimplantation genetic diagnosis, a method that tests embryos obtained by in vitro fertilization, may be available.
Skin biopsy. A diagnosis of vascular type EDS can be confirmed by checking for abnormalities in the collagen produced by your skin cells. In this test, a small sample of your skin is removed and examined under a microscope.
Echocardiogram. To check for the heart conditions that can occur with some types of EDS, your doctor may recommend an echocardiogram, which is an ultrasound of your heart. An echocardiogram provides real-time images of your heart in motion, and can help identify abnormalities in the heart muscle and valves.

[sxsxsx]

No I was not checked for  Ehlers-danlos. Can they do a blood test or how do they test for that?

[sxsxsx]

I looked at the link you attached and the doctor I chose is on that link. How funny! What makes this list of doctors unique? Do they have additional training in our condition?

To: Jenshead
When I went the first time I went armed with stacks of test results and research. He did take me seriously but I found that he I got easily distracted by how quickly he typed (he types a mile a minute). He held the keyboard in his lap and didn't look at the keys once while I was there. I was thinking what the heck is he typing a bunch of letters. I will go less distracted next time. Seriously it doesn't take much to distract me. I'm surprised I didn't forget why I was there. lol

No but we did talk one to one and he didn't feel like what I was experiencing was because of my Chiari. He did acknowledge that I have it but he wasn't convinced that was my problem. Honestly he didn't give me any answers at all. He just gave me medication and told me to come back in 3 months. He wanted to try to treat me for migraines first.

[selmaS]

  Can't u change the position of the screen? or ur chair...could be u r more compressed on that side and y it is a problem...I know turning toward my left was an issue for me as well.

  BTDT- I had surgery for tarsel tunnel (ankle) yrs b4 my dx..and later had an EMG test and found I never had tarsel tunnel or carpel tunnel it was the chiari ...so I had surgery I did not need...

Were u checked for Ehlers-danlos...it can cause some of those symptoms.

  U r welcome...let me know how it goes : )

     "selma"

[sxsxsx]

Thanks Selma!


My computer is at eye level but I have to turn my head to the left to look at the screen. So my head is at an angle most of the day. I did find a Chiari Specialist but it's a Neuro   Surgeon. I'm afraid to go because I don't want them to suggest surgery unless I really,really,really need it. I told myself I would give this Doc one more chance but the last time I went he told me my left hand showed signs of weakness and he thought I had carpal tunnel syndrome. He had me come back to do an emg and an nerve conduction study (which I knew would be normal). It made me sort of upset because that's not even why I was there! I wanted answers about my brain and why he found weakness in my hand. I also have posriasis and psoriatic arthris so it's hard to tell where the numbness and weakness is coming from since my hands sometimes swell. I understand he has to rule out other disorders but this was my second emg and nerve condtion study and he knew this. I had one when I was 24 that is when I started having problems with my health. I will take your advise Selma. Thanks again for letting me vent.

[jenshead]

My current neuro is at a university so I tried "attacking" from the academic route.  I googled each major symptom, each medication that helped, etc and searched thoroughly enough to end up with medical journal articles, medical textbooks, etc.  All sources a doctor would take seriously.  I didn't find a lot, but what I did find lead me to some conditions that sounded very much like what I have...not perfect and I didn't honestly think I had them, but something to implicitly say "look, I'm trying REALLY hard to help you diagnose me, will you try this hard too?"

He has not gotten anywhere nearer to a diagnosis, but you know what...he started taking me really seriously after that.  If you think your dr would respond well to that, try it.  Just keep in mind...you don't want to insult him!  Delicate balance, but it can work.

Also, if you are not seeing a doctor at a university...might be worth a shot.

[selmaS]

  If ur Dr does not believe something is there he is not going to listen, u may need a diff Dr....many of us have had this happen and we call it "the royal chiari run around" they dx is there it is on the MRI...but the Drs still say no it is not that, when in fact we r having issues...if there is a zebra in the room acknowledge it...u can not call it a horse and forget it...it is what it is and there is no changing the stripes.

Find a true chiari specialist to help u.

BTW- Lift ur computer monitor up by placing it on something so it is at eye level, I did that for yrs b4 I got my dx..and it was one thing my Dr said to do....keep it at eye level so u do not bend ur neck.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Use the list from the above link to research and find a chiari dr that is right for u- the list is not a referral, but a means to help u get started on ur research : )

  Good luck and keep us posted

       "selma"