Nuero appointment

Okay guys, I finally get back to the nuero on Tuesday after 9 months of not being able to go because of no insurance....

So I know that all of our Migraine are different...but here's the general of mine...4-5 per week...nausea...dull pain to sharp shooting pain, to absolute pounding..

History of Chiari Malformation (Corrected in 1997...small TIA (brain stroke) in 2008. Enlarged ventricles (Yeah that's one of my questions..what are those?!?!)

I have questions for the Nuero that i've already developed on my own....
1. New medication...Preventives or Rescues?
2. Pain management
3. What are enlarged ventricles?

Do any of you have any standard questions that you ask your nuero that you think would be good for me to ask.

Again, I know we are very individualized in our pain and symptoms...but I just want to be well preprared for this appointment.

Thanks in advance for any advice,

LL

Please elaborate on what medication you are currently taking and your history of medication. I have been following your posts but please forgive me, I have a horrible memory and the pills I take make it a little worse.

I'd also like to know if you have a doctor that would be open to recommending alternative treatments. Sometimes all that funky stuff is really worth investigating when you've tried everything else. You never know what might work, and hey, don't you want to try everything on the list so at the end of time if and hopefully not you still wake up with a migraine you have the comfort of saying "Well, I gave it my best."

Do you have enlarged ventricles in your brain or in your heart? I found this about your brain. It fits because Chiari has to do with fluid in your spinal cord right? (Forgive me if I'm wrong I'm trying to learn, I may very well be mistaken as I have not researched it a lot) This has something to do with fluid from your spinal cord building up in the ventricles in your brain causing them to become enlarged but there are a plethora of symptoms you would notice and it seems to be quite severe. It most commonly happens in infants and if left untreated can cause mental retardation.

I also found this to ease your worries about it if you do further research on...some of it is quite scary if you google enlarged ventricles.

In the last 3 years, I've taken Topomax (Can't Handle Side Effects), as a preventitive, and now I am on Prestiq.

I also have Relpax for rescue meds.

I've tried Treximet, Imitrex, Topamax, Elavil, and so many others I can't remember because I was 13 and 14 when I was on them, My mom has them all cataloged in her brain.

I'll explain the Chiari and stuff a little bit more...I had the decompression surgery in 1997....the headaches subsided for a while...but came back, however, they were different.

After that I kept going back to the nurosurgeon until I was 18, because of the headaches. Everytime, He'd do a MRI and say that nothing I was experiencing had anything to do with the Chiari. So we quit going to him.

I quit going to any specialist because, well I was fed up. I was in college and I just wanted to try and be normal.

I went in for an MRI from my GP after the headaches kept coming, they called me and said they thought they'd found an anuerysm. I had a repeat MRi and they concluded it was just a shadow.

So after that scare, I went back to just living with the headaches and taking pain medication that my Mother would give me.

In the Spring of 2007, I started feeling weird one day and I took my blood pressure at a grocery store. It was 140/115. I talked to the pharmacist and they said I needed to go to the ER. I called My mom and she said I needed to go check it at another grocery store just to make sure. It was still the same. So I went to the doctor on the college campus, in triage, they took my bp and rushed me to an EKG. They found nothing on the EKG but told me that my blood pressure was sky high and I should consult a doctor.

My Mom contacted a cardiologist office and the nurses assured her something was wrong for a 23 yr old (at the time) to have such high bp. So I rushed home for a Cardiologist appt. He did an EKG but found nothing irregular and diagnosed me with high bp and put me on Inderall (generic name Propaninol) for BP.

I was experiencing headaches throughout this time.

The Inderall contained the high bp and the headaches for a while.
In the spring of 2008, I was finally out of college and was teaching Special Education. I'd been experiencing such horrible migraines I'd have to teach my classes while wearing sunglasses. One day, as I read to the students, my left arm went numb and I was unable to speak the words I was reading off the page.

My co-teacher took me to the school nurse, who took my bp and it was again sky high...So I made an appointment wiith my GP. Who then told me she thought I'd had a small stroke....and sent me to an ER.

I went to the ER and they consulted a nuero on the phone who didnt think there was any reason to do any brain test or anything which I found weird. He just said I'd had a stroke variant caused by high blood pressure.

I went home that night from the ER. But returned Sunday morning 2 days later after the migraine had no subsided and I'd been unable to pass urine for over 24 hours. I was admitted and the nuero had an MRI done the next morning. He came back with "You seem to have enlarged ventricles in your brain and this causes your migraines". I guess I never felt real sure on what he meant.

He's also gone and told me that I might just be a person who has migraines....that I might just have to live my life this way.

I'm giving him one more chance on Tuesday because he comes very highly recommended.

I hope all this backstory helps...sorry its so long!

Your blood vessels become enlarged because of a migraine LOL

well let me explain that..(although pen just posted an article with new research contradicting this, although what I am about to say has been common belief for a very long time now)

When you get a migraine what supposedly happens is due to vascular changes in your brain, blood vessels in your brain constrict because your blood flow drops then they enlarge. A theory of why this happens is because your nerve cells get excited in your brain and cause blood flow to change. Not a whole lot of discovery has been made here, so don't quote me but this is why they believe topamax and other epilepsy drugs work for prevention.

Hope this helps you explain your doctor (who sounds like he's on topamax himself LOL!)

Yeah I probably should have left this nuero already because on one of my visits I told him I just couldn't live like I was living with the pain anymore and he said "Well, I could Euthanize you." He thought it was funny..me not so much.

Hey you know what...some days if it weren't for my precious daughter, I might concider that option. He obviously has no idea what a chronic migraine sufferer goes through, let alone what a migraine feels like I bet.

Dumba$$. When you see him, razz him with your fantastic knowledge of the constriction and dilation of blood vessels in your brain.. watch his mouth drop open with a drizzle of saliva nip out and memorize it. Hold it in your memory bank and file it under idiot. LOL!

lovegia wrote:Dumba$$. When you see him, razz him with your fantastic knowledge of the constriction and dilation of blood vessels in your brain.. watch his mouth drop open with a drizzle of saliva nip out and memorize it. Hold it in your memory bank and file it under idiot. LOL!

Good idea, lovegia (I love your eloquence)! It makes you wish these doctors could live one day with the pain and symptoms we experience--they'd certainly be more sympathetic.

Becky

Some words of advice to prepare for your visit with the new neuro this week.

Make sure this neuro has as much documentation of your case as possible including previous doctors reports, lab tests, ER reports etc. If you're not sure what has been forwarded to their office, call the office today and ask their staff what they have in your file. If it is not complete, ask if they can have the appropriate materials forwarded to them, you may have to supply them with the contact information. You may have to do this yourself, or you may even have some or all of this information already in your possession. Don't assume they have a complete file on your case. If they do, fine you have wasted 10 minutes of your time. Also don't be surprised if you see the doctor reading your file for the first time with you sitting in the chair. It may be as thick as a phone book, it is your whole life, you know it intimately and yet this stranger will sum it up in 3 minutes by skimming through it. True they have done this before and are highly trained, but if you see them going through your file let them take their time to go through it carefully before saying a word.

Prepare a list of questions in advance and write them down. Then prioritize them in order of importance. In going through your list of questions don't dwell too long on any one (unless it is a critical one) because you may find that before you know it you will get a "sorry our time is up" come back in 4 months. You can always return to topics for more in depth discussion if time permits.

Bring extra paper and pen/pencil to write with to take notes or record the conversation with a voice recorder (ipods and many portable music players/phones have them now).

Even though this specialist comes "highly recommended" if after a few visits you are not satisified with the way you feel you are being treated get another opinion from a different specialist. I realize you are fed up with being "examined" but there must be a medical professional who can give you what you are looking for. Honest dialogue and communication that you can trust. You may not like what they tell you, but if you feel it's trustworthy it can make all the difference.

Do you now have insurance, Laci?

You may be beyond the realm of a neurologist, with your history. I know you gave it a good try with the neurosurgeon who decompressed you, but that was a long time ago. There are many other "fish in the sea." Especially where you live.

Perhaps you want to consider seeing a new neurosurgeon. You could get recommendations from WACMA.

Perhaps you have elevated pressure:

http://www.ihrfoundation.org

The only way to know your pressure is by doing a lumbar puncture. An MRI cannot detect Intracranial Hypertension.

Many Chiarians also have Intracranial Hypertension.

I don't know about enlarged ventricles, what that means for you. CSF issues get very complex!

But I would not take the word of one or two doctors who brush it off.

I hope you can get some answers that make a difference for you!

Cheryl

Thank you guys for all the advice!

Yes Cheryl I do have insurance now...Thank Goodness!

Last night, my husband and I sat down and wrote out a list of questions I have. He isn't able to go with me, but My mom will be going with me to help with the questions.

I'm glad you have insurance now, Laci! It opens up new options for you.

Here's the recommended neurosurgeon list from WACMA:

http://www.pressenter.com/~wacma/usdocs2.htm

Cheryl

And from Chiari Connection International:

http://www.chiariconnectioninternational.com/doctorlist.html

Cheryl

Laci, here is some additional info on Chiari/PTC:

http://www.conquerchiari.org/subs%20only/volume%204/Issue%204(1)/PTC%204(1).asp

You might have to cut and paste, to get the link to work.

Cheryl