It’s My Surgi-versary!

It has been one year since I got treated. For all the random cynics out there who had no interest in MS patients’ health but just blasted the procedure while acting like they had patients’ best interest in mind…. I say “nyah nyah nyah nyah nyah”! (Note- this is VERY different from caring friends who actually just wanted me to be safe and were skeptical of the procedure- there were several of these folks- and I love them and appreciate their concern and thoughts about the procedure.)

Anyway, I think after one year, my total percentage of symptoms gone is 80%. It kept staying at 80% even as more things would go away, because I would keep realizing I had further to go than I thought I did.

I went out with a group of friends last night to celebrate the surgi-versary (organized by my sweet husband) and it was really fun. A year ago there’s no way I’d have had enough energy to go out with so many people for a whole evening (too many people was too overstimulating), and then we walked around downtown together- something I haven’t done with a group of people after dinner in about eight years. It was so fun. MS has really taught me the value of friendship, and I also read an article the other day about how “not keeping up with friendships” is one of peoples’ top 5 regrets on their deathbeds. I’m so glad I keep up with them better than I used to.

I’m guessing I’ll be forced to get an MRI soon- I just HATE MRIs- the late night, the injection, the claustrophobic tube, the loud noises and not being able to see anything and wearing earplugs. I’m not planning to remind any of my docs that I need one.

Weight Loss- next step

Hi All- Part of me hates to write this post, because it really bothers me how the US is SO uptight about weight- I really think this country’s obsession with weight CAUSES health problems for so many people- especially women. The obsession is so pervasive that we don’t realize we have it, and that we don’t need to have all the emotional upset around weight and food issues. I believe that the danger of “weight shame” manifests as physical and even “weight-related” illnesses. Did you know that African-American women are on average heavier than white women, but they have (or did as of 1990) less weight- related illnesses? I think this is because being heavy is more accepted in the African-American community. I don’t know if that stat is still true today, or if weight shame has invaded that group of people more now.

That being said, I have been in my job for six months, my recovery is almost at one year, and I decided this is the right time to do a special diet (I shall called it the X Diet- I don’t want feedback on my dietary choice from people). I’m ALWAYS on a diet in that I don’t generally eat sugar, starch, or grain. I’ve been doing this for nine years and I’m quite sure the MS would’ve been MUCH worse had I not done the diet. But now I’m trying a prescribed diet that works with my regular guidelines.

I have done the X diet before, and I remember the very high level of energy I felt while on it, even before I lost weight. My job is so demanding that I really could use something to boost energy, sleep better, etc.

I still have the muscle spasms and nerve pain, and they really really tire me out, make it hard to sleep, and put limits on my energy. Hopefully I can make up for this energy loss by doing a diet that I know boosts my energy.

I’m also going to see a urologist about how I have to go to the bathroom so many times a day. I have an awesome new doctor (FYI- she’s taking new patients if you’re interested!) and she actually is interested in helping me sleep well at night- she’s not just into responding to immediate symptoms. She suggested going to the urologist, and trying to get at what is behind my urinary issues (they’re ms related, that’s for sure- but I’m unsure of the details of why). So I hope to be on a drug that can help these issues. Now I’m putting out as much energy as a normal person every day (yay!) so darn it, I want to be sleeping like a normal person!!

I only get like one really refreshing sleep a year, if that. I was telling a co-worker about getting up 3-7 times a night to go to the bathroom, and she was like “wow, that’s like having a newborn!!”

I will keep you posted on what I’m noticing with the weight loss– how it affects my sleep, energy, and bathroom issues (I hear this diet can make some people have to go less times a day). And, I’ll keep you posted if I start on a drug, and how that goes.

I will be happy to have a diet that just tells me what to eat, so I don’t have to think through what to choose for a meal, every time I need to eat (since I have to choose non-sugar, non-starch, non-grain items).

The challenge with Diet X will be trying to plan in advance for every possible situation where there could be temptations or I could be away from home and hungry. Especially in a workplace like mine where there are SO many offerings of free and delicious meals for one reason or another… Not much prepared food fits the diet, so I guess I’ll be cooking a lot in the next few months… 🙂

How to Get Treated for CCSVI

A CCSVI activist posted a video on how to get treated. I have to admit that I haven’t watched the whole thing, but I trust this woman and her videos, so I feel comfortable posting this. Click here. It’s the video that is first and foremost on the left when you open the page.

I’ve Cut My Muscle Spasm Meds in Half over 11 Months

So, I used to take 12mg. of muscle relaxants, and now I take 6- this is a huge difference to me, and I’m so grateful that my muscle spasms are going away. I suspect it’s a combination of things:
– Time- it just takes time for the MS symptoms to decrease
– Potassium supplements, Magnesium supplements, and several different supplements from Springtime Inc.
– Being a lot happier in life

Of course, now I’m realizing certain things that I thought were connected to muscle spasms actually aren’t. I still have pain all day/every day, and all night. Nerve pain, muscle pain, etc. I think my very bad TMJ is part of it. Also, I think having to go to the bathroom so many times and resisting getting up to go causes muscle tension for me.

Anyway, I’m very happy about it! Less muscle spasm meds. means much less muscle weakness at night and in general. The med makes your muscles kind of flop around- you can’t hold them tensed.

Montel’s Appearance on Dr. Oz

Well, I thought it was going to be a whole hour long show on Montel and CCSVI, but it turns out it was only a five-minute segment where Dr. Oz and Montel talked on this topic. I also thought Montel spoke with more authority than his background should allow him to do (he’s a patient, not a medical authority), on national tv, but I do appreciate that he’s trying to make it so that CCSVI is talked about more and is more of an option for people. Click here to watch it.

Montel on CTV News About His CCSVI Results

Click here for the news story. Keep watching after it seems like you’re at the end of the video- a lot more of the interview comes up after that, oddly.

Two Interesting Things

1. I suspect that Montel’s episode on Dr. Oz will be on in the near future. I know he just got done taping, and that it’s usually two weeks before an episode airs. Cool! I think I heard too that Montel is thinking about doing a TV show again. He must not be feeling too badly if that’s the case.

2. I’ve been reading about a woman who had MS and CCSVI, got an angioplasty and found lots of benefits, etc. Then she restenosed and got tested for blockages again, but this time the doc checked for more blockages in more veins (such as Iliac and Renal veins). She got those cleared as well, and her improvements are actually much better than they were the first time around. Hmmmm…. interesting!

Broke my good streak and had a sick day

So I was able to go six full months without a single sick day!! I can’t believe it. The surgery’s results (being able to exercise more, having more energy, being able to take immune supplements) resulted in me not getting sick at all. I used to HATE handing my timesheet in at my old job because there would always be sick days listed on it and both my boss and I would be hyper-aware of it and I even had a boss who would congratulate me on the months I didn’t have any sick days- I don’t think she realized how bad that would make me feel- as if I had control over it.

I always suspected that people wondered if I was really that sick or if I would just throw a few extra days on here and there just for kicks- but that if I just stopped being lazy I could work through things. I never once exaggerated my illness though- I couldn’t afford to- I already used all my sick days as it was. In fact, I spent most of my days at my old job very aggressively downplaying my symptoms so as not to raise alarm. It was very easy to lie because I physically didn’t look sick, so whatever I said to people was believable.

And when I would get a cold I’d be so sick I couldn’t drive a car, couldn’t really do anything but lie on the couch, because my MS would flare up.

Being sick yesterday… was a cake walk! I know if I really needed to, I could’ve run to the pharmacy or grocery store or whatever else. No serious MS flare up. Yay!

More of the Cool Stuff a Commenter Sent Me

More from Dean Janaky- thanks, Dean!

http://www.ncbi.nlm.nih.gov/pubmed/11887092
The decreased blood supply to the cerebellum and basal ganglia is the cause of the cerebral thoracic neuro vascular syndrome (CTNVS) and its neurological complications, among which are ipsilateral paralysis, symptomatic Parkinson’s disease, functional Alzheimer’s disease, multiple sclerosis, and others. <—I'll bet one of the "OTHERS" will be Fibromyalgia.

http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation <—I think Fibromyalgia will rear it's ugly head here too.
Symptoms of this include:
Headaches aggravated by Valsalva maneuvers, such as yawning, laughing, crying, coughing, sneezing or straining
Tinnitus (ringing in the ears)
Dizziness and vertigo
Nausea
Nystagmus (irregular eye movements)
Facial pain
Muscle weakness
Impaired gag reflex
Restless Leg Syndrome
Sleep Apnea
Dysphagia (difficulty swallowing)
Impaired coordination
Dysautonomia: tachycardia (rapid heart), syncope (fainting), polydipsia (extreme thirst), chronic fatigue

Fascinating Article on Parkinson’s Disease and Vascular Compression

Dean Janaky made a very interesting comment on my last post. An article he linked to deals with blood vessels in the brain, causing Parkinson’s Disease. I will point out more of what he said later, but here’s the text from that article: http://www.wpahs.org/news/9-8-2011/mri-study-suggests-brain-blood-vessel-abnormality-may-be-factor-parkinson-s-disease.

MRI STUDY SUGGESTS BRAIN BLOOD VESSEL ABNORMALITY MAY BE FACTOR IN PARKINSON’S DISEASE

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Thursday, September 8th, 2011

A potentially treatable blood vessel abnormality in the brain may be the cause of Parkinson’s Disease in some patients, according to a study published today in the journal Neurology International by a team of leading physicians and neuroscientists at Pittsburgh’s Allegheny General Hospital (AGH).

Recognized worldwide as one of the preeminent authorities on diseases associated with vascular compression of cranial nerves, the study’s lead author, Peter Jannetta, MD, is credited with developing the modern surgical technique to treat such conditions. Called microvascular decompression (MVD), the procedure involves repositioning compressive arteries in the brain and placing a protective pad between the artery and the structure it is compromising.

It was in course of treating a patient for the cranial nerve disease trigeminal neuralgia who also suffered from Parkinson’s Disease that Dr. Jannetta first observed the possible role of vascular compression in Parkinson’s. In addition to vascular compression of the left trigeminal nerve, the patient also had notable compression of an area of the brain called the left cerebral penduncle. The cerebral penduncles are two cylinder-like nerve bundles in the brain stem that act as a conduit for signals that control motor functioning throughout the body.

After performing MVD of the left trigeminal nerve, Dr. Jannetta decompressed the patient’s cerebral penduncle by mobilizing and repositioning the offending artery. The results were stunning. By post-operative day five, the patient’s Parkinson’s symptoms, including severe tremor and rigidity, had disappeared. She remained symptom free for 18 months, after which she suffered a full recurrence. A follow-up MRI scan showed new compression of the non-treated right cerebral penduncle by the opposite posterior cerebral artery.

Based on this case, Dr. Jannetta and his colleagues at AGH conducted a blinded MRI study analyzing the brains of 20 patients with Parkinson’s and 20 healthy control subjects. The study showed that 78 percent of the Parkinson’s Disease patients had visible arterial compression/distortion of one or both cerebral penduncles.

Of the study’s 20 control subjects, just two had low grade compression of the cerebral penduncle and one of those was subsequently diagnosed with Parkinson’s.

“Though we clearly need to continue our research on a larger scale to substantiate this remarkable observation, the very idea that a manageable vascular abnormality in the brain may be a critical factor in disease onset and manifestation for some Parkinson’s patients is an extremely exciting possibility,” Dr. Jannetta said.

Parkinson’s affects more than one million people in the United States and despite significant advancements over the past several decades in uncovering the pathogenesis of the disease, conventional treatments provide symptomatic relief only.

Dr. Jannetta said his team’s data raises compelling questions that will be addressed in follow up studies: Is there a form of parkinsonism related to arterial compression of the cerebral penduncle? Does unilateral cerebral penduncle arterial compression cause unilateral disease only? Can it cause bilateral Parkinson’s Disease in time? Can MVD relieve parkinsonism and if so, will it be as safe and effective as seen in other diseases?

A multi-center clinical trial to further explore the AGH team’s premise and is slated to begin later this year.

In addition to Dr. Jannetta, who serves as Emeritus Professor of Neurosurgery at AGH, other members of the study team included AGH neurosurgeons Donald Whiting, MD, Matthew Quigley, MD, and Joseph Hobbs, MD, neurologist Jon Brillman, MD, and neuro-radiologists Melanie Fukui, MD and Robert Williams, MD.

Dr. Jannetta and his colleagues at the AGH Jannetta Cranial Nerve Disorders Center, including neurosurgeon Khaled Aziz, MD, have performed more than 10,000 microvascular decompression surgeries.

Dr. Aziz’s recent addition to the program has enabled Dr. Jannetta to expand his groundbreaking research into the role of vascular compression in a growing number of cranial nerve and brainstem syndromes, including hyptertension and diabetes.

A landmark paper published by Dr. Jannetta in the August 2010 edition of Surgical Neurology International presented the first evidence that vascular compression of a section of the brain called the medulla oblongata is a factor in Type 2 diabetes.
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Dean says “Dr. Aziz’s recent addition to the program has enabled Dr. Jannetta to expand his groundbreaking research into the role of vascular compression in a growing number of cranial nerve and brainstem syndromes. <—I'll bet one of the "GROWING NUMBER OF SYNDROMES" will be Fibromyalgia."

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