Hi all

Just a quick note to say that I haven't dropped off the face of the earth. It has been a really busy summer with the girls home from school, doctors appointments and long term disability woes. I have discovered that being on the computer as well as reading books and writing really ramps up my nausea. And since none of the meds really help my nausea at all I have to be really cautious of aggravating it. Sooooo, this means I have had to really limit my computer time.

Nothing really new with my situation otherwise. I'm still having good days and bad days. Nausea and back pain continue to be my most aggravating symptoms. I was in Emergency again last week for a little IV fluids and some pain control. I did get approved for Long term disability finally.

I apologize to all my friends and readers for the long delays in returning messages and emails. I will update more another day. Thanks to all for your ongoing support and kind messages. I truly appreciate your ongoing support

SSEP and me...

SO I went back to Vancouver last week for my SSEP test. This was ordered by the NS I saw in Vancouver several weeks ago and was administered by a doc that he works with. I think he is a NL although I never actually quite figured it out.

The test wasn't painful and wasn't really very useful. My result was normal. Basically, they stimulate your nerve in your foot with a little electrode that feels like a mild buzzing sensation. This buzzing makes your toe twitch. They then place an electrode on your skull which measures if the signal that your toe is twitching is getting to your brain and at what speed.

My signal is travelling normally along the spinal cord which means there is no major disruption. This is good news. I have heard of other folks though having this done in different positions and that certain positions completely changed the signal in those with tethered cord. I think it was touching your toes that was this issue as the tether pulled. But mine was only done laying completely still in bed.

It was fine that the test was normal but then I was given a mini-lecture following by the doc about how Occult tethered cord is a made up diagnosis etc etc. I interrupted him mid-lecture to say that I am only trying to get answers and the BEST quality of life possible. No one in Canada can explain why I am having the symptoms I have so I am seeking out the answers myself to try and preserve my ability to walk, bladder function and prevent further progression of symptoms. That's all.....If all the docs up here say it's not my syrinx but you don't know what it is then of course I am going to seek out my own answers and I'm sure you would do the same. This stopped him from carrying on with the full lecture but it really was not a very useful visit.

I still have the EMG upcoming but this can be done locally so at least I will not have to travel back to Vancouver for that one.

Neurosurgeon Visit

I went to my NS last week in Vancouver and I apologize for not updating sooner. I don't really know what to say about it. I'm not really upset b/c I didn't expect much. It's more that I am just fed up with the fight. The attitude of the docs up here is ridiculous. I am really just stunned by their unwillingness to consider anything new that research is proving.

The good news is my syrinx is unchanged from last year. I also got a SSEP and EMG test ordered which will help rule out peripheral nerve causes and also help prove the tethered cord theory. This is the extent of the good news.

The bad news is that he does not believe in Chiari zero or occult tethered cord. He believes Dr. B made these things up to make money. No amount of discussion would even slightly change his mind. I talked about my brainstem being elongated on my MRI in NY and he countered with a neuroradiologist doing his own measurements on me and coming back with everything normal.

When my husband and I asked...well, what do you think is causing all of these complex and debilitating symptoms....he said We don't know and don't understand these things very well yet. We may never know....chuckle chuckle. I am just floored. I went and found the answers to these questions from the experts and he is completely unwilling to accept any of their findings. If I hadn't gone out on my own and gone to TCI I would have never been dx with what I have and been able to find strategies to help improve my life. For instance it was TCI that first dx me with POTS and the beta-blockers have really helped. They also were the ones to suggest urodynamic testing and sure enough I have nerve damage to my bladder.

If I had listened to him last year I wouldn't have known any of this and would have been in much worse shape. I was basically told last year that there was nothing to be done, just go home and learn to live with your symptoms. It's just beyond frustrating. I don't feel mad or depressed I just feel disbelief. How can it be that they admit they don't know what is causing all my brainstem and lower spine problems but when I seek out the answers from one of the worlds experts the answers are completely dismissed.....I just don't get it.

Oh, he did say he will do a shunt operation for me when my syrinx is big enough......gee thanks......Rather than addressing the cause and preventing syrinx growth we will wait around until it grows enough and destroys enough spinal cord to warrant a risky sugery to insert a shunt. By the time the shunt is warranted my symptoms will be a lot worse and will be permanent. Great plan.

OK, enough sarcasm. I am putting this one behind me, getting my tests done and on to the next doc. I'm going to get a referral to another NS in Vancouver that trained at Toronto Western with Dr. Tator. I don't know if this a good thing or bad thing but we'll give it a try. thanks to everyone for all of your prayers and good thoughts, I really appreciate it and it helped me stay calm and focused during my appointment. Slowly but surely I am moving forward.

In the Tube

Well, I went for my first of many yearly MRI's yesterday. It was of my cervical and thoracic spine first without and then with contrast. It took forever!!!! I was in the tube for about 1:45min. I hate laying on my back and even with 3 pillows under my knees my lower back was screaming and then there is this swallowing thing that happens when I am on my back. Everytime I swallow when I am supine (on my back) it "clunks" and feels like there is a lump there. So of course then I can't stop swallowing and it keeps clunking. I guess it kept my mind off the time anyway.

So I will find out the results when I see my NS June 24th. This appointment is a biggie folks. I haven't seen my NS since I went to TCI. So this is when I will find out how he is going to take my dx of occult tethered cord, chiari zero etc. He was very upset when I mentioned I was planning to go to NY so I don't think it's going to go very well. I'll find out if he is open to the idea of sectioning the filum terminale when it is the occult variant. I'm thinking not. but I have to ask. I have decided to take hubbie with me for moral support. I'm nervous but anxious to get to it.

On the rebound

I've heard stories from folks about the rebound headaches and neck pain folks get when they take their collars off but I had yet to experience it until recently. Due to my current bout of gagging and nausea I have been wearing my collar a lot more. Basically anytime I am up and active (doing housework or cooking etc) and it has really helped.

BUT, when I take it off......OH, Lordy!!!!!! Its like my head suddenly weighs 100lbs. I get an instant pressure headache, the nausea comes back and I get muscle spasms in my neck. This is a new one for me.

Any suggestions from you collar gurus out there how to avoid the rebound effect? I am not wearing it for longer then one hour max. and maybe 4 times per day. Any suggestions?

And now...a message from my brainstem

I've had daily nausea for about 6 months and I was always aware that things could be much worse.....and now they are..... For the last 3 or 4 days I feel like I am about to gag at any moment. It is constant but this sensation is made much worse by moving around a lot or by laying down with my pillow not just right. At times I really have to focus on NOT gagging b/c it feels like if I start I won't be able to stop. Along with this gagging sensation comes this INTENSE throat pain. Not like a sore throat but this PAIN in my throat. As gross as this sounds I also keep having stomach contents just suddenly slip up into my mouth. I know, it's gross....there is no heaving or warning it's just suddenly there.

The nausea I have had for 6 months is absolutely neurolgic in origin. It just feels completely different from any kind of GI nausea. In the same way this throat pain also feels neurologic in origin too. Difficult to explain why I feel that it is but I am sure that it is.

The Zofran really does not seem to have much effect on this gagging feeling. The only thing that seems to help ease it is wearing my collar. I still only have a soft collar. I have been referred to an orthotist to get an Aspen fitted but I don't have an appointment yet. I guess I need to go but my family doctor again and see if she can speed it up. Wearing my collar doesn't fully take it away but it does help.

I just need to get rid of the embarrassment of wearing it!!! It is so stupid that I feel like this but I do. I hate all the looks I get when I go out with the collar on. I know many of you reading this have experienced this and worse...I thinking of those of you that have been in CTO jackets.....and it's something I'll just have to get used to I guess.

I'm thinking this is all brainstem irritation. Nausea, heart arrhthymias, swallowing, gagging, sleep apnea....all the symptoms I have been troubled with lately all originate from the same place. I think my brainstem is really under attack either from compression due to cranial settling or traction from the tethered cord. I really hope that these troubling symptoms will be enough to get my NS attention. I have my appointment on June 24th. Maybe it is good all this is happening right before I see him. He can't possibly ignore all that....can he?

The Weight of the World

We live about 2 minutes from the coast so we are essentially at sea level. 2 weeks ago we went to Kelowna for the weekend. For those that don't know we had to travel by ferry to Vancouver and then drive into the mountains for a few hours. I just looked it up and Kelowna is 1129 feet above sea level. I've been thinking about this alot b/c I felt so good for the first few days I was in Kelowna. I had no nausea and the pressure feeling I have in my head was gone. This lasted for about the first 2 and a half days but then my symptoms crept back.

I think it was the change in atmospheric pressure I know my friend Laura in Mexico mentioned this too me before too that when she went up into the mountains her symptoms improved so this is what made me think of it. I guess it makes sense. At sea level you have that much more atmosphere pressing down on you but when you are up 1129 feet their is less and I think it gave me the temporary relief that I felt. I know many of us with cm are human barometers but I can't say that I normally feel much change in my symptoms with weather changes. But I certainly did feel it with the altitude change.

I felt so good I went shopping at the mall in Kelowna for several hours and bought some new clothes. I haven't done this in about 6 months b/c I just can't tolerate the mall anymore. So it was great to have this little holiday.

I don't know if this would be the same for everyone. I strongly feel that my intracranial pressure is chronically elevated. I can feel the symptoms of it mildly everday (pressure sensation in my ears behind my eyes and nose, tinnitus, pressure headaches, dizziness, nausea and visual symptoms) This is referred to as pseudotumor cerebri and does occur in some folks with cm. Occasionally it gets much worse for a week or so I will need to take Diamox to lower the pressure. I don't understand really what causes these spikes just as I don't understand why the rest of my symptoms come and go. But I wonder if those that have normal ICP would also experience a benefit with higher elevation or not.

I'd love to hear any thoughts on altitude and cm. I really don't think it would benefit me long term to live at a higher altitude b/c by day three my symptoms returned as my body seemed to adjust to this new normal.