Need to vent!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Need to vent!!!

Postby Kacey » Tue Feb 09, 2010 9:15 pm

Okay, so after Michael's amazing few days tearing through the house with our children 3 weeks after his angioplasty, he started to develop some leg pain. We thought that perhaps he overdid it, but on Saturday, 4 days after being the most active he has been in about 10 years, he realized that the soreness was not getting better, only worse. Feels like his "MS pain", his main symptom is severe leg pain...
so he goes to his neuro's office today. His neuro is not in office, the partner is in, who, by the way, believes that "MS doesn't cause pain"... My husband asked for something for pain, before the pain gets too out of control and was basically treated like a med seeker...
this is nothing new. Whenever he is admitted to the hospital, and this is pretty much every time, this is how he is treated. And he feels like a "dirtbag" because of this.
What upsets me is that they dont know the times when my husband is at home, not having a flare up, NOT on pain meds. I work in an orthopaedic practice, and must say, I am guilty of doing the same thing. And I need to learn how to open my mind up a bit.
When the neuro asked my husband about the procedure (whilst rolling his eyes up to the heavens...GRRRRRRRRR!!!!!) he said to Michael, "Well if the procedure works, why isn't it working right now?"
Let me tell you, that man is so lucky I was not present at that visit today. I am not a violent woman, but I'm pretty sure he would have had his clock cleaned!! So, he refused to give my husband any pain medication or steroids. Luckily he saw his PCP on Friday who called me that evening to tell me that he hadn't seem my husband like this since he was a kid. He was amazed at how alert and pleasant Michael was....Michael was sore, but again, we thought it was just muscle strain. So, his PCP prescribed him something for pain.
While Michael's attitude and energy is still much more positive than would have been prior to the Liberation Procedure, I can't help but feel let down that he is experiencing this leg pain. I wonder if anybody else out there had any set backs after the Procedure. Any thoughts would be so appreciated!
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Postby WeWillBeatMS » Tue Feb 09, 2010 9:38 pm

Way to vent Kacey! I am still in the beginning phase of trying to get my veins tested for the stenosis. I sent out a bunch of letters at the end of last week and I now have an appointment with an interventional radiologist in a few days to start the dialog. But my first thoughts are one, could the angioplasty not have held up (or open)? I know that I read that the angioplasty normally holds for up to 18 months but I assume it varies with the patient. Just an idea. The second thought is has he started any kind of a detox process to try to get the iron deposits out of his brain and body? I still need to research for a good one to use once I have the Liberation Treatment. Don't give up Kacey! Keep fighting. Keep asking questions.

We Will Beat MS
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Postby JoyIsMyStrength » Tue Feb 09, 2010 9:51 pm

Kacey I am so sorry you had such a negative experience with this neuro. Your husband should not be made to feel like a "dirtbag." I haven't had the procedure so all I can do is offer encouragement but I will say that a miracle drug for me when it comes to nerve pain is Neurontin (Gabapentin). Everyone is different of course but for me it has worked within minutes for severe leg pain when strong meds like Vicodin wouldn't even touch it. If he hasn't tried it, I recommend it. It's not the kind of drug that would label him a "drug seeker" since it's non-narcotic. It can tend to cause drowsiness and for some people you need to let it build up in your system a bit for it to kick in.

Sending lots of hugs and well wishes your way. Hang in there and keep up the good fight. I want you to know that your posts have been a source of encouragement for me. God bless you.

Pam
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Postby cheerleader » Tue Feb 09, 2010 9:57 pm

Kacey-
My Jeff still has neuropathic leg pain, nine months since his procedure. He had a very large lesion on his cervical spine, and we are not sure that this will ever heal. That said, the leg pain is no worse, and is a bit better than before the procedure. You need to understand that we do not know how much can heal by fixing stenosis. Just as a stroke victim may have lasting damage, the death of neurons from CCSVI may not heal. Jeff has much better energy and no MS progression, but he is not 100% back to the way he was pre-MS. This is hard to hear, but repairing CCSVI is not a miracle cure. It may very well stop further progression, but some damage may be permanent. Time will tell. Maybe Michael's leg pain will be less frequent, maybe it will someday go away...we can hope.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby HappyPoet » Wed Feb 10, 2010 7:17 am

Kacey, I'm so worried about Michael and you. I sent you a PM.

Love, HappyPoet
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Postby ErikaSlovakia » Wed Feb 10, 2010 7:32 am

Cheer is right.
I had the procedure 99 days ago. I still have many problems but something is better and I for sure do not feel worse - I do not have relaps.
I still have my neuropathic pain in my right arm. I take Carbamazepin - so far it helps. I can control the pain very well. I take 1050 mg a day before the procedure 1200 mg.
Dr. Simka told me long time before my procedure that it would be normal to feel better and worse and better...
I have problems with my fatigue again. But for example in this moment I do not feel almost any fatigue.
Time will show us.
Just take it easy!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby costumenastional » Wed Feb 10, 2010 8:00 am

Oh man... what the hell was that all about????
Who ever said that by opening the veins all past neuro damage would just heal?
What an idiot... Criminal doctors...

Have faith.
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Postby cheerleader » Wed Feb 10, 2010 9:06 am

costumenastional wrote:Oh man... what the hell was that all about????
Who ever said that by opening the veins all past neuro damage would just heal?
What an idiot... Criminal doctors...

Have faith.


No one ever said that opening the veins would relieve all past damage. I've been very clear about this, so have the other folks who have had the procedure. So have the doctors. Dr. Zamboni's patients saw symptom relief in fatigue, headache, depression, sleep issues, spasms- and some saw more effects....but long term axonal damage may never heal. We are hoping that opening the veins will stop disease progression- and Dr. Zamboni's studies have shown that when veins remain open, relapses stop and progression ceases- but he has only been studying patients for 3 years. This is still early work, and it is not a miracle cure. I hope we've been clear about that on here....
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby costumenastional » Wed Feb 10, 2010 9:13 am

Of course we are Cheer.
But some doctors are using whatever they can to fight this off.
This is really anethical if you ask me. Trying to convince a patient that a treatment he had, doesnt work because it didnt "fix" everything...
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Postby happy_canuck » Wed Feb 10, 2010 9:15 am

cheerleader wrote:No one ever said that opening the veins would relieve all past damage. I've been very clear about this, so have the other folks who have had the procedure.


I think costumenastional was referring to the doctor who was sarcastic about Michael's treatment, not something that anyone here said.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby costumenastional » Wed Feb 10, 2010 9:21 am

exactly. thank you.
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Postby Cece » Wed Feb 10, 2010 11:22 am

What I've read here on the forum is that CCSVI treatment is most effective and quickest for "neck and up" symptoms...the mental fatigue, cog fog, headache, memory issues, etc. Below the neck is trickier...issues with walking or leg pain would be a result of the damage already done to the spinal cord...but if no more damage is happening, that's huge, and the body can heal. Hope he's feeling better today. It is worth watching for the return of m.s. symptoms as a whole because there is that risk of restenosis.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby catfreak » Wed Feb 10, 2010 11:31 am

Kacey,

I had the procedure 6 months ago and I have days where I feel like I never had the procedure and then days where I feel like I never had MS. Be patient and be thankful that he was one of the lucky ones who has been able to have the procedure. Many are not as lucky as us.

Rest is a good thing. Even people without MS can't go 100 miles an hour all day long and not feel it.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby HappyPoet » Wed Feb 10, 2010 12:27 pm

Hi kacey and Costume,

I know kacey and Michael did not have unrealistic expectations regarding the procedure -- yes, it is hopefully to stop progression, not to relieve symptoms, but, for whatever reasons, the procedure does sometimes relieve them.

The point of kacey's thread, as I understand, is that Michael's leg pain did disappear for three weeks after the procedure, but then it came back -- and it came back so strongly that he required proper pain management, which he did finally receive.

And I have to agree with you, Costume -- imo, it feels downright criminal what some doctors sometimes say, don't say, do and don't do, especially when they withhold proper pain control medications.

At the very least, Michael's neuro should have been compassionate about his pain and given an emergency referral to a pain management specialist.

A neuro believing that MS doesn't cause pain must still be in the dark ages -- that's what the prevailing thought was ten years ago when I was diagnosed. Pain is now listed as an MS symptom by every MS association and numerous other organizations as well as in textbooks.

But it doesn't take a textbook past high school anatomy to know that BOTH sensory (afferent - to the brain) and motor (efferent - from the brain) nerves run inside the spinal cord, and in MS, BOTH can be affected by MS-caused inflammation, demyelination, axonal loss and atrophy -- ergo, any sense can be affected, just like any motor function can be... and the sensation of pain is one of the first sensations to have evolved.

Doctors not knowing that MS can cause pain is the BIGGEST problem I've personally faced in my decade with MS. Sheesh. Stupid doctors.

kacey, I'm with you -- I would have cleaned his clock, too!!

And, because I take this issue very personally, I then would have stood and shouted an anatomy lesson two inches from his face, would have called him an idiot, would have told him I would be instructing my insurance company not to pay for the wasted office visit, would be posting his name on every quackery website on the Internet, and would be turning him into the proper agencies for medical negligence. I then would have stormed out of his office slamming the door after me!

:)

~HP
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Postby Johnson » Wed Feb 10, 2010 3:41 pm

Good rant, HappyPoet. I fully agree about reporting him to the relevant authorities, etc. Screaming in his face might not be so productive. Those guys have syringes full of meds, and the ability to have one declared mentally unfit.

There have been a lot of good comments about Kacey's post, and I would like to add the notion of a whole other world of diet, homeopathy, supplementation, etc. to be considered. A brilliant homeopathic remedy for nerve pain is hypericum perforatum. There are natural pharmacies in just about every medium city and larger. I can pretty much guarantee that if you try hypericum, you will find relief from the pain in short order. There is a lot of mainstream doubt about homeopathy, that I used to share - until I had 4 wisdom teeth out . The prescription meds were not touching the pain and swelling (intense). I tried hypericum that a naturopath had given me, and had pain relief in seconds. The pain soon disappeared altogether. Then I took arnica montana for the swelling, and that disappeared in a couple of hours. I threw away the prescription stuff, and have never used anything but homeopathy since. As a bonus, there is zero toxicity or side-effect.
My name is not really Johnson. MSed up since 1993
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