Another diagnosis
#348152 - 07/16/09 05:19 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Well, unrelated to my ibs, I've had another round of appointments, an angio MRI and finally the results.
I have tinnitus in my left ear, steady now since November. The dr. sent me for an MRI to ensure there was no aneurysm etc. That all came up fine, no blockages, no aneurysm. But the dr. said I do have a Chiari I abnormality. This means the back of my brain extends down into the base of my skull too far into the foramen magnum and C1 vertebra.
Chiari malformation causes severe migraine-like headaches, muscle weakness, insomnia and bouts of sleep you can't wake from, some facial weakness, and can cause tingling in the extremities. So a lot of the symptoms which I relate to my chronic migraines and prior shoulder surgeries!
So now I have to wait to be referred to a neurologist for monitoring. If I get whiplash or a head injury regardless how minor I should go to emerg in case of hemorrhage, bruising or concussion. I've been told I'm okay to ride my motorcycle, but might want to reconsider my rollercoaster fetish as G force can cause whiplash... And I have a trip planned specifically with a rollercoaster day in it in 2 weeks!
Just to add to everything else gone array in my body!
Has anyone else been diagnosed with Chiari I malformation?
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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Oh my goodness! That's terrible! I can't imagine having something like that.
Is this a rare malformation?
Oh, Cassandra! You poor thing!
I'm so sorry; I hope things turn around for you!
I don't have much to say, just hope to comfort some!
Hugs
Kappy
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IBS-C, Gas, Bloating, HURTING!
I'm married and it's so wonderful!
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Hi there! So sorry you are having problems. Is there anything they can do to help it?
{{hugs}}
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Re: Another diagnosis
#348182 - 07/17/09 07:19 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Chiari malformation can occur in 1 per 1000 people but only 15% of people have symptoms. Guess I'm in the 15%.
If severe there are surgical options. I won't do anything without a couple of good drs opinions. Surgery will reduce the pressure and sometimes eliminate the symptoms. But I'm not keen on brain surgery!! Even with surgery you still have to be cautious - so still no roller coaster riding, trampolining, sky diving etc. My DH and I travel to theme parks! That's our entertainment on holiday. I leave in 12 days to see my best friend and we have roller coasters planned.
I guess I'm happy knowing. But I'm not ready to give up all of my extreme hobbies! But the alternative is scary.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Hi Toady.
Wow...how interesting. But how great that you have a diagnosis. It's always a little relieving to know exactly what the problem is.
I know this is gonna sound funny but could you get one of those padded neck brace things for your rollercoaster rides? Might feel funny strappin' it on just before one of the crazy ones but might relieve some of your worries! Inconvenient but peace of mind.
Sorry that you have this. I get migraines, too but not nearly as often. So, I feel your pain.
HUGS to you...I still linger here once in awhile. I'm doing fairly well right now.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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Re: Diagnosis Update
#349139 - 08/17/09 07:15 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Well I saw the neurosurgeon today - amazingly quick!!!
He has determined that my chiari herniation is between 6 mm and 8.1 mm. He remeasured the mri scan and found it 8.1 mm. All of my symptoms are chiari - occipital headaches, tingling hands, halos, numbness in my face, trouble speaking, hiccups, etc.
He left the appointment saying to call him when I was ready for surgery. Not we'll monitor you, we'll run more tests, let's see how this progresses. Surgery. It's a decompression surgery where they cut a piece of my skull out at the top of my spine and replace it with a larger piece grafted from my thigh bone. This reduces the pressure on my brain and thereby all of the above symptoms (hopefully). Success rates are 70 - 80%. The remaining percentage have symptoms reoccur in 5 - 6 years at varying degrees, and a small percentage report no improvement.
So now I have more research to do and a huge decision to make...
I could use some hugs... I'm scared to death about any surgery, let alone this one.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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HUGE HUGS!!! Just saw your status on facebook and came over here to see what was up. Do your reading, take one step at a time, and know that we're here to lean on!
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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 Cassandra- I wish you all the best-but this is a decision you have to make based on the best knowledge you can get-I really hope the best for you!!! I could not ever make a decision like that!
Always, love everyone.
Margie
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Oh wow, that IS a big decision! Are you going to talk to someone else for a second opinion? Do you plan to go through with this? Knowing how awful migraines are, I think it would be worth it to not have them anymore. Good luck to you!!! And lots of hugs!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Oh man, Toady, I am so sorry to hear the seriousness of your condition. And you are soooooo right, they jump right to either cutting, nuking, or poisioning, there is no damn middle ground.
If it were me, I would get a second opinion. I know it is alot of time, energy, and expense, but I know from personal experience, that they do get it wrong, and all the time. They just hide it from us.
They removed my gallbladder unnecessarily and the way I found out was, I had the same symptoms after removal, as I did before. My gallbladder was fine, but since they could not DX me, they just took it out. I finally saw a very good gut doc who said my symptoms were all stemming from the IBS. He said that I missed a step in my DX...a visit to him. Instead I went straight from my primary doc to a surgeon. Biggest mistake of my life, and boy was I pissed.
So, please think long and hard, and I am sure you will do what is right for you.
God Bless!
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Hugs!! My advice just pray about it and listen to your heart!
emmasmom
ibs-c gas
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How do you know you didn't need your gallbladder out?
I just wonder because I was full of stones and one was stuck so I had to have the surgery for removal.
I too have alot of the same symptoms from before that I put down to my IBS and now there are things I can't eat BECAUSE i have no gallbladder.
Did you have stones?
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IBS-D since 1999...mostly stable..i do cheat too.Bad me.
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Hey Toady sorry to hear you may be heading into surgery.
Definately do your research before commiting to that but good luck to you.
Wouldn't it be nice to have your symptoms just go away.
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IBS-D since 1999...mostly stable..i do cheat too.Bad me.
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The very good gastro doc I had after the gallbladder was taken out requested all medical records. He saw nothing on the ultrasound to indicate removal of the gallbladder. I was told it was inflamed and diseased and needed to come out by the surgeon. The gastro guy saw nothing wrong with my gallbladder. I was having IBS symptoms that affected up under my right rib cage. They assumed it was the gallbladder and took it out. I still have the same pain at times along with a pain along the right back side of my back. The gastro said it was all bowel related and my gallbladder should not have been removed.
Where I made my mistake is that I went directly from my PCP (I no longer have him) to the surgeon, with the ultrasound. I did not see a gut doc.
I learned a valuable lesson from that experience. ASK QUESTIONS AND GET A SECOND OPINION!!!!!!!!!!!!!!!!!!!!!!!!! And go with your instincts or gut (no pun intended) feeling.
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Thanks everybody
#349234 - 08/20/09 02:59 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Thanks guys, I can always count on the people here to be supportive.
This is a huge decision!! I'm going back to my GP to refer me to another neurosurgeon. I'm hoping to find someone who specializes in Chiari but it's not looking promising in Ontario so far.
I've had a few days to read more and think more about it. I believe if I can find the right surgeon I will have the surgery. It would be so nice to feel better and not have these headaches all the time.
I'll keep you posted.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Is there anyone in London or the Toronto area?
Good luck in finding one.
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IBS-D since 1999...mostly stable..i do cheat too.Bad me.
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Re: Thanks everybody
#349406 - 08/24/09 07:48 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I'm waiting to see my GP next Tuesday and I have 2 more names from my sis-in-law who are brain surgeons in TO, but I haven't found anyone who specifically treats Chiari in Canada. I'll see what my GP says. I just hate waiting!!
Thanks for thinking of me!!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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