- Family Member
- Posts: 51
- Joined: Fri Jun 04, 2010 2:00 pm
- Location: Newfoundland, Canada
Really glad to read your posts and will continue to do so whenever you post. Please stay well and feel free to post more from your sponsor since I was in need of hearing it.
Take care of yourself and GOD BLESS!
And to him who lacks might He increases power.
Though youths grow weary and tired,
And vigorous young men stumble badly,
Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.
–Isaiah 40:29-31 (NASB)
In the three and a half years my son and I have been jogging the half-mile to the community center he has stumbled badly and fallen twice, while I, with MS, have not. I stopped going with him about two months ago because MS had made it too difficult.
Last Monday, I got back on the horse. Although I had to walk the last bit because of my right leg, I had more breath than I have had in years. The next day, leg muscles were sore that I had forgotten that I had. Even the muscles in my feet were sore! Clearly these had not been used for a considerable time.
I now realize that I had really stopped using my feet to jog. Instead, I was jogging mostly from the hip because my legs and ankles (right especially) had gotten so stiff. The stiffness is now mostly gone. I feel like the Tin Man that has had a good greasing. My knees, ankles, toes and fingers all feel a little looser every day.
We’ve jogged there 3 more times and each time my right leg gets stronger until this morning I made it all the way. Still not 100% yet but it is definitely improving. The other thing that seems to be improving is the numbness in my hands and feet. The accompanying tingling sensation has also subsided to a whisper. The numbness is definitely still there, but after two weeks I can definitely say it is better.
I feel like my MS shrinks a little everyday from something that used to color everything to something that is beginning to fade into the background. Everyday it seems like all my symptoms get a tiny bit better.
- Family Member
- Posts: 51
- Joined: Fri Jun 04, 2010 2:00 pm
- Location: Newfoundland, Canada
So glad to read your last post - especially "shall gain new strength".
Please continue to post so that those of us who appreciate it can be encouraged once again. I am VERY glad to hear the continued progress you are making. Your family must be so joyful.
Still waiting but encouraged,
to this forum. Wife just diagnosed with RRMS and just started her injections
(4 total so far). Anyhow, was your neuro supportive of your decisions to get
liberated or do you even see a neuro? Why I'm asking is because I
notice you're from Portland and I live in Vancouver. My wife's neuro doesn't seem too impressed with CCSVI so I'm in search of one that will at least listen.
Perhaps it is easiest to just tell you how I got here. Sorry for the length, but I can't see anyway to shorten it.
This whole odyssey started for me back on December 18th of last year when a long-time friend forwarded me a link to the CTV W-5 show on Zamboni. Like a pendulum my heart swung between wanting to believe and not wanting to get my hopes up. I immediately sent a message through Oregon Health & Science University's (OHSU) secure patient portal to my neurologist. On December 21st I received the following form letter from one of his nurses:
Yeah, it pissed me off too. After pondering it for a couple of weeks I decided to bypass my neurologist and make an appointment to see a vascular surgeon at OHSU.My Neurologist wrote:The “Chronic Cerebrospinal Venous Insufficiency” theory of MS and the "Liberation Therapy, which involves doing interventional neuroradiology on the venous system with dilatation and placement of stents, is spreading rapidly via the web and national news stories. While this sounds exciting, there are many questions that need to be addressed and the "Liberation Therapy" requires an expensive and potentially dangerous and unproven treatment.
There are only two research publications on this thus far and both are by Dr. Zamboni in Italy. He is not a neuroradiologist nor a neurologist and has had minimal participation from neurologists knowledgeable about MS. There are two problems. First, there has yet to be independent verification of Zamboni's claim that 100% of people with MS have cerebral venous vasculature narrowing or occlusions. Second, even if there are large venous abnormalities, no one, including Dr. Zamboni, has established cause and effect. Any venous abnormalities might all be secondary to effects of inflammation in veins draining from the brain.
While I think it is important to keep an open mind about any novel ideas about MS, these ideas still need to be proven by research done by more than one person. Plus, it is unclear how abormalities of blood vessels that drain the brain could cause MS lesions in the spinal cord and optic nerves, two areas that MS commonly affects.
Unfortunately some radiologists are moving rapidly from an observation published in two articles from the same individual to offering treatment to MS patients. One MS patient receiving this "Liberation Therapy" has already died from a complication of the treatment and another required open heart surgery to remove a stent that had fallen into the heart.
Dr. Zamboni's observations need to be replicated by other research groups and, if replicated, further research needs to be done to establish cause and effect. No one should be treated with a vascular invervention outside of an institutionally approved research protocol.
The NMSS just issued a request for research proposals and will be funding research to rapidly check on the validity of Dr. Zamboni's findings. If they are reproducible then the issue of cause and effect still needs to be sorted out and whether subjecting patients to interventions that carry some risk (as already demonstrated by the one death) also needs to be objectively investigated.
For more information, check the NMSS website (www.nmss.org)
January 10th we met with the vascular doc. He was open to the idea of CCSVI, but not really excited by it. He claimed to be familiar with Zamboni's research, but frankly, I don't think the guy really read it. He went ahead and ordered a CT scan which he estimated would cost about $1000. Cost was a key concern because we knew that insurance probably wouldn't cover it. Yes, I know, I was stupid and should have done more homework but I felt like I was breaking the rules and so I tried not to be too pushy.
A few days later I was getting what turned out to be three CT scans (head, neck and chest...they charge per body part). Because the admin filled out the paperwork wrong we thought the scans would be covered by insurance, but while I was in the scan the insurance company called the receptionist to let her know that they had rejected the pre-approval. When I walked out, I was handed a bill for about $7,500!
My wife and I returned the next day for the results. After making us wait for about 30 minutes, they sent in a snot-nosed intern to bluntly tell me that they didn't find anything. I was crushed. I asked to see the scans and he fumbled around with the completely inadequate exam room computer for a few minutes eventually showing me these grainy images with little to no explanation as to what they meant. My disappointment transformed into anger. I had just paid 7 times more than I was led to believe for this?! I let him know that I was not a happy customer.
The intern left and came back with a real doctor with marginally better people skills. I told him that I felt like they had pulled a bait and switch on me and that I wanted to talk to the IR (highly unorthodox!). In trying to talk me down off of the ceiling this doctor blurted out, "But, your MS isn't that bad, is it? You haven't had that many relapses, have you?" At this, I shook my cane in his face and said, "I've had at least one relapse a year for the last five years and 6 months ago I wasn't walking with THIS!!" My wife (a nurse) was cringing in the corner pretending not to know the crazy patient with the anger problem.
To this doctor's credit he went to bat for me and after a couple of weeks got the almost intractable billing department to reduce the charges to around $400. He also arranged for a meeting with an IR who would talk me through my scans on a much better computer. During this meeting, the IR apologized for the CT scan since, after reading Zamboni's paper (which the original vascular surgeon failed to share with him), he would have ordered an MRV instead. He knew Dr. Dake (called him a "shining star" within their profession) and offered to correspond with him regarding the proper MRV protocols. I left less crushed than I came.
Within a week of this, my neurologist, a heavy-weight within OHSU (who only took me as a patient because I happened to be friends with the son of his department's biggest donor, "any friend of ______ is a friend of mine."), sent me the following email:
I thought, "Dude, why would I want to talk to you about something you can't even name properly?" This was sent to my personal email and not through the secure OHSU email portal. I had never before received an email from him before in the 5 years I had been his patient. It took a couple of back and forths before he stopped quoting from the stupid form letter and gave me a real response:My Neurologist wrote:I received a report indicating that you had undergone evaluation for “chronic cerebrovascular insufficiency.” I would be happy to discuss this by telephone with you before you pursue this any further. This entity has little valid science behind it despite what is appearing on the web. The radiologist at Stanford who was treating MS patients for “CCVI” has been required to stop doing so because there is no convincing evidence that CCVI exists as an explanation of MS and one of the patients he treated died as a complication and another required major heart surgery because of a complication.
If you would like to talk, either by phone or in person, please let me know.
That was actually a viewpoint I could get behind instead of all the rhetoric he had tried to feed me before.My Neurologist wrote:It is understandable that you feel that way. And don't get me wrong. No one will be happier than me if this leads to a new and effective therapy (and OHSU has some of the finest interventional radiologists in the country).
That said I have been working with people with MS for 27 years and there have been many other treatments with wonderful testimonials from patients who have undergone the therapies and reported incredible results. Hyperbaric oxygen, mercury detoxification, bee stings, calcium chelation and Procarin to name a few. All have proven over time to provide little or no benefit. So I am skeptical with reason.
To my disappointment, on February 19th, the IR gracefully bowed out of the whole deal with the following email:
Clearly the Neurology department holds great sway at OHSU. I had an appointment with my neurologist on March 24th where he reluctantly agreed to get someone at OHSU to perform the MRV. His agreement came with a boat-load of caveats and warnings designed to control my expectations and to reinforce my perception that this whole department would be approaching the entire endeavor expecting to find ... NOTHING. Because of this, I decided not to take him up on his offer. He didn't want to find anything and that is exactly what he would have found.The Interventional Radiologist wrote:No bother at all - I apologize for the delay, but I have been having difficulty determining the answer. Since our equipment is different, the exact sequences could not be reproduced, but they could be approximated. However, more important, I wanted to know whether the Neuroradiology department at OHSU would be willing to take on these evaluations. This would require more than adjusting sequences, but also developing expertise in interpretation. There seems to be such controversy surrounding this diagnosis and intervention that my honest opinion and best advice is to not have the imaging done here. This is not an easy recommendation for me to make, as I have the utmost confidence in the group here, and in OHSU. But I am concerned that you will not be best served being the first person to be imaged here for this specific indication.
If you are going to end up paying for this out of pocket, I think it would be better to go to Stanford to have the imaging.
Let me know if I can help you with Dr. Dake - sounds to me as though you have not had any progress?
I stopped taking Rebif in June. I think it did help for the first 3-4 years, but it felt like it's effectiveness was petering out. Oh, and they doubled my co-pay. Oh, and recent studies showing the ineffectiveness of CRAB treatments at delaying disability were the last straw. I was surprised not to receive another email from him when I quit, because the mail order pharmacy said they were going to tattle on me.
My next neurological appointment is in September. Can't wait.