Thought I'd throw this out there. (Medical stuff)

[GAWildKat]

Some of you lovely people know that right after Mike and I came home I saw a neurologist. My migraines had become more severe in the weeks before and after Vogel. I have had migraines since I was at least 2 years old and have tried almost every med out there for migraines and some that aren't. Everyone who has treated my migraines almost all agree that my migraines were related to the cerebral palsy and brain damage I had at birth. The neurologist ordered an MRI of my head. I have some brain damage (we knew that right?) But a brain malformation called a chiari 1 was discovered on the MRI, more MRIs of my head and neck were ordered.

 

I'm still learning what a chiari is, but the basic thing is my brain was too big for my skull and part of it grew down into my spinal neck area and causes me to have headaches when I sneeze and such, maybe even the migraines as well.

It's something I was likely born with and wasn't commonly diagnosed when I was little so it's easy to understand why it was missed back then.

 

What does this mean for me you ask? I dunno yet. Likely surgery to open room at the base of my skull to relieve the pressure on my brain. My neurologist has referred me to the Medical College of Georgia to be evaluated by their doctors. I see one of their neurologists on Dec 4th.

 

I won't lie, I'm scared to death of the idea of brain surgery. My mom was a surgical tech and worked speciality cases like brain surgery and spinal procedures. Dinner talk was the interesting and scary cases she had that day. I can handle the idea of working on almost any other body part of me, but brain surgery can get screwed up and the person you were before surgery is not the same after. We have chosen not to tell family anything til we know more about what the next few months and year might be like. We felt especially, that Mike's Mom didn't need to know anything until we know what the next steps will be.

 

 

Prayers and blessings will be appreciated.

 

If you read through my post this far, thank you for sticking with me til the end here. I felt the need to discuss this scary stuff somewhere.

 

Tricia

[Great White]

Three types of operations scare the bejesus out of me: Spinal, joints and brain.

 

Spinal because of chance of paralysis, Joints because once they go in it seems they're never the same, and brain....well, brain speaks for itself.

 

That "opening the base of your skull for more room" doesn't sound like fun at all!

 

I'm not a religious man, but sending you my best wishes for a successful procedure and a speedy recovery.

[slowrollwv]

Dang sorry to hear of the trouble you are going through. Hope they can get you fixed up without any trouble. Prayers sent your way.

[GAWildKat]

Three types of operations scare the bejesus out of me: Spinal, joints and brain.

 

Spinal because of chance of paralysis, Joints because once they go in it seems they're never the same, and brain....well, brain speaks for itself.

 

That "opening the base of your skull for more room" doesn't sound like fun at all!

 

I'm not a religious man, but sending you my best wishes for a successful procedure and a speedy recovery.

I agree with you on all those points. My mom fell 20-25ft from a deerstand when I was 7, broke her back at L5/S1 refused to have surgery then because she knew the prognosis postop. Fast forward 7yrs to 1988 and she had no choice but to have surgery. Her recovery was slow and unfortunately not complete. We learned later the neurosurgeon who was assisting on the case didn't want to do the surgery as it wasn't the right surgery for her injury. I hope my prognosis is MUCH better than hers was then. Heck, I'm scared they may tell me to stop riding bikes or living dangerously lol. I may decide against surgery to keep my independence. I don't know yet.

[XV1100SE]

Thinking of you. Hope all goes well.

[GAWildKat]

Brightside is my head isn't going to blow up next week or next month. It is what it is.

[Yammer Dan]

Any surgery scares. But they keep doing them. And people keep getting thru them. We will be with you.

[videoarizona]

I'm with Yammer on this. Thankfully, techniques have improved tremendously in the years we've been around.

 

Tricia, the most important information I've read so far this past year is for you to ask lots and lots of questions. Advocate for yourself! Question the doc, question the procedure, get second opinions on both the docs, the hospital and the procedure. Keep asking until you feel comfortable with the hospital, the docs and the procedure. Then and only then, make your decision whether to do it or not. Feel free to send your MRI scans to other docs around country and ask for their opinions as well. Between University teaching facilities to the Mayo type clinics there are a lot of choices. Some docs have tons of experience doing cases like yours, others not so many. That's what your questions need to weed out.

 

Prayers for you added to my nightly list!

david

[GAWildKat]

I'm with Yammer on this. Thankfully, techniques have improved tremendously in the years we've been around.

 

Tricia, the most important information I've read so far this past year is for you to ask lots and lots of questions. Advocate for yourself! Question the doc, question the procedure, get second opinions on both the docs, the hospital and the procedure. Keep asking until you feel comfortable with the hospital, the docs and the procedure. Then and only then, make your decision whether to do it or not. Feel free to send your MRI scans to other docs around country and ask for their opinions as well. Between University teaching facilities to the Mayo type clinics there are a lot of choices. Some docs have tons of experience doing cases like yours, others not so many. That's what your questions need to weed out.

 

Prayers for you added to my nightly list!

david

You are correct on all points. I am very good at asserting myself with medical stuff. After all this could be my 8th surgery in 15 yrs. I'm going to be very cautious with this stuff, and yes, getting at least 2 opinions is in my plans. I will do my best to be referred to Emory as well. Have a friend trying to get me to be referred to to a hospital in Cincinnati as well, but that's a bit far for me to travel.

 

But it was very neat looking at my MRIs yesterday, I got copies of them last week. I could see the brain damage from my birth injury and it wasn't at all like one of my previous family docs said it was.

[rbig1]

Well good advice I've read. That's no little thing. Prayers out for you and family.

[bostonlawman2003]

Ironically both my wife and my best friends wife have Chiari Malformations. My friends wife is much more severe than my wife's, she had to have the corrective surgery two years ago and has seen many improvements in her life since then. My wife is monitored with annual MRI's and a visit with the neurologist.

 

My friends wife is pregnant now and expecting a baby boy in March.

 

Best of luck to you! We will keep you in our thoughts and prayers.

[GAWildKat]

Ironically both my wife and my best friends wife have Chiari Malformations. My friends wife is much more severe than my wife's, she had to have the corrective surgery two years ago and has seen many improvements in her life since then. My wife is monitored with annual MRI's and a visit with the neurologist.

 

My friends wife is pregnant now and expecting a baby boy in March.

 

Best of luck to you! We will keep you in our thoughts and prayers.

I have an 8mm chiari 1, I'm told that's usually pretty bad. I would love to talk with someone who has this and even if possible get feedback about the surgery and/or nonsurgical route as well. I have a lot of educating myself to do in the coming weeks as well. I figure if I have lived with it this long it's not going to blow up anytime soon either.

[DragonRider]

We got your back Tricia, keeping you in our prayers, we know all to well about those type of surgeries.

[GAWildKat]

I think what's really scary is I might be bald for a while, I just cannot see myself with a chrome dome. Mike's actually taken the news better than I have, which is unusual. I'm not sure what that means. I'm the one usually keeping him calm and convincing him that I'll be ok.

Edited October 13, 2015 by GAWildKat

[CaptainJoe]

Tricia, Penny and I will be keeping you in our thoughts and prayers.

[Great White]

I think what's really scary is I might be bald for a while, I just cannot see myself with a chrome dome. Mike's actually taken the news better than I have, which is unusual. I'm not sure what that means. I'm the one usually keeping him calm and convincing him that I'll be ok.

 

Being "hair vain" myself, I understand the don't want to be bald thing.

 

But hair grows back.

 

The military taught me that......

 

Small price to pay for good heath and quality of life into the golden years.....

[Yammer Dan]

I think what's really scary is I might be bald for a while, I just cannot see myself with a chrome dome. Mike's actually taken the news better than I have, which is unusual. I'm not sure what that means. I'm the one usually keeping him calm and convincing him that I'll be ok.

 

Ya saying there is something wrong with my bald head??? Its not all bald!!LOL Being bald is different but who wants to be mormal??

[Great White]

Ya saying there is something wrong with my bald head??? Its not all bald!!LOL Being bald is different but who wants to be mormal??

 

 

I've always said If I get that "friar tuck look", "solar panel" or the dreaded "comb over", I'd just give up the fight and shave it all off.

 

Have a couple friends that fought it and finally went "full monty". Looks much better than bits of hair here and there.

 

balding heads make a guy look prematurely old. Bald heads are just, well.....bald.

 

And it actually looks better/good on some guys.

 

Just not this guy!

 

[GAWildKat]

I don't think I can rock a Sinead O'Connor look myself. Will be interesting if it happens...

[Great White]

I don't think I can rock a Sinead O'Connor look myself. Will be interesting if it happens...

 

No worries my dear.

 

The bandana look is in these days and hair will grow back. Hair even covers over any scars that may be left afterwards.

 

No one will ever know after a couple months.

 

[GAWildKat]

My hair generally grows fast, abt an inch or so a month, but not quite that fast. Hubs has already said he'll buy me a wig if I need one.

[Great White]

My hair generally grows fast, abt an inch or so a month, but not quite that fast. Hubs has already said he'll buy me a wig if I need one.

 

Lol!

 

I usually get dirty looks when I bring home a wig for the missus!

 

[garyS-NJ]

Your hair should be the least of your worries. I'd be freaking out too. I went to Sloan to fix my throat and felt very anxious. But you have a chance to get rid of migraines? I used to get bad headaches and lived on aspirin. That put a hole in my stomach but the headaches mostly went away. I wouldn't want to live like that. Take your time educating yourself on it and learn the risks and probable outcome .. network, research, see doctors.. and you will be confident in your plan. you're gonna be fine.. my mom had an acoustic nuroma.. she researched and got cutting edge treatment. Worked pretty good.

[GAWildKat]

Your hair should be the least of your worries. I'd be freaking out too. I went to Sloan to fix my throat and felt very anxious. But you have a chance to get rid of migraines? I used to get bad headaches and lived on aspirin. That put a hole in my stomach but the headaches mostly went away. I wouldn't want to live like that. Take your time educating yourself on it and learn the risks and probable outcome .. network, research, see doctors.. and you will be confident in your plan. you're gonna be fine.. my mom had an acoustic nuroma.. she researched and got cutting edge treatment. Worked pretty good.

I've had migraines since I was at least 2 yrs old. In the 70's it was almost unheard of to see a child with migraines, let alone a toddler. None of the meds currently used to treat migraines work for me. So it's been take something for the nausea and sleep off the migraine. On avg I get migraines once or twice a month on a good month. When the weather is changing a lot with fronts moving through rapidly, it can be daily, as it was in August.

 

The challenge any neurosurgeon will have is how much of my problems are caused by cerebral palsy and how much are caused by the chiari malformation. And will surgery help alleviate some of the problems I have with balance and walking. Those are things usually affected by a chiari. Getting better balance would be great. My future on 2 wheels rather than 3 would be almost assured.

 

 

It might seem vain to worry about my hair. But in all my surgeries thus far in one way or another I was able to cover up the fact I'd just had surgery with clothes. I didn't have to explain to someone I didn't know or care to discuss the finer points of my case or why I have a new set of scars. If I am shaved partially or completely to do surgery, it exposes me in a way I'm not comfortable with yet. I'm aware hair grows back. I alternate between long and short hair every couple of years or so.

 

I already field questions regularly on why do I limp or hold my head a certain way (my sense of balance is always skewed) or just the fact I do things differently because of my physical limitations. Anyone who has met me knows I sometimes push myself too far and have to take it easy for the next few days.

 

As with everything, this is a journey, and I will take it at my own pace. I just refuse to give up riding for the sake of being free of migraines.

[garyS-NJ]

You should also learn how to blow off prying questions. Only your friends should ask you about your well being -because they care. If someone is just curious answer nothing and smile.