The Walton Centre for Neurology and Neurosurgery.
Fri, 09/04/2009 - 14:03 | 
Chris Last night I attended a Chiari meeting at The Walton Centre in Liverpool.
The meeting was hosted by Tony Murphy from PALS (Patient Advice and Liason Service) and was attended by Sara Kewin a Chiari and Hydrocephalus Nurse Practitioner and Angela Lansley, Regional Advisor for ASBAH the Association for Spina Bifida and Hydrocephalus.
For a link to the official meeting info page.
Involved in the meeting were 6 other Chiari sufferers and their carers / partners as well as my wife and I of course, all at different stages of treatment and recovery and all from very different backgrounds just like you and me.
No tree hugging or mantra's involved, just a warm opportunity for people to get together, introduce themselves, and talk about Chiari and Syringomyelia and how it affects their daily lives. An absolutely brilliant bunch of people all hungry for support, answers and reassurance.
We did all however have a common experience with different levels of mis-diagnosis, mis-information and a lack of free, accurate and helpful information and support during the early stages or our journey. Some, still in fact experiencing that at the time of the meeting. Early on in the session, all that changed as we were put at ease by the Team at the Walton Centre very quickly.
We were informed about new advances in patient care and support that they are pioneering and have already made headway in with some very interesting information almost at the publishing stage. We know that they have to jump through hoops to make this happen, but we were rest assured that a lot of the hoop jumping had already ben done, and it was just a case of dotting the I's and crossing the T's.
They informed us of a few points here which I will expand upon when I receive the official information from them. However the following is very exciting:
1. They are working hard on having Chiari and Syringomyelia regarded as being a "long term condition" much the same as Hydrocephalus, and MS and Parkinson's Disease is currently. This will mean that there will be a requirement to provide patients with much more information and support right through from early diagnosis to post operative care and beyond with regular clinics and support services for patients and their carers.
2. They are very near the publishing stage of a patient and carer information pack, which is currently as the "reading" stage, to ensure that it is easily readable by you and me who do not necessarily understand medical terminology when used to any excessive degree.
3. They are raising awareness of both conditions and are going to push more information out to local GP's and surgeries to educate them in recognising the early signs of Chiari malformation and Syringomyelia. they are also passionate about explaining that everyone's Chiari and Syringomyelia affects them differently dependant upon each individuals personal situation, other medical conditions and physical appearance of their Syrinx - if in deed the patient suffers with either or both. This is one of the difficulties that hinder correct diagnosis.
4. They currently have a Nursing Practitioner dedicated to the improvement in treatment and support for Chiari and hydrocephalus in Sara Kewin. Sara is currently only funded for 2 days a week in here role out of her full time job. She is a brilliant asset to the department in that she is a Chiari and Syringomyelia expert and offers her expertise and advice to all concerned parties. A role that pushed her to the maximum with regards to time limits each week. We need more funding hopwever, to increase the benefit of her expertise and commitment towards Chiari and Hydrocephalus.
They also have offered me help, support and practical advice with regards to my own personal projects in raising awareness of Chiari Malformation and Syringomyelia.
More to come on this topic.
If you would like to, or have already raised funds to help support sufferers of Hydrocephalus, Chiari Malformation and Syringomyelia, then please click on the following link which will take you directly to their website and facilities.
The Walton Centre for Neurology and Neurosurgery "No limits Campaign"
Thank you.
Tags: 
“Unnecessary risks are being taken by patients seeking the liberation treatment.” says Dr. Avneesh Gupte of the CCSVI Clinic. “It has been our contention since we started doing minimally invasive venous angioplasties nearly 6 years ago that discharging patients who have had neck vein surgery on an outpatient basis is contra-indicated. We have been keeping patients hospitalized for a week to 10 days as a matter of safety and monitoring them for symptoms. Nobody who has the liberation therapy gets discharged earlier than that. During that time we do daily Doppler Ultrasounds, blood work and blood pressure monitoring among other testing. This has been the safe practice standard that we have adopted and this post-procedure monitoring over 10 days is the subject of our recent study as it relates to CCSVI for MS patients.”
Although the venous angioplasty therapy on neck veins has been done for MS patients at CCSVI Clinic only for the last 18 months it has been performed on narrow or occluded neck veins for other reasons for many years. “Where we encounter blocked neck veins resulting in a reflux of blood to the brain, we treat it as a disease,” says Gupte. “It’s not normal pathology and we have seen improved health outcomes for patients where we have relieved the condition with minimal occurrences of re-stenosis long-term. We believe that our record of safety and success is due to our post-procedure protocol because we have had to take patients back to the OR to re-treat them in that 10-day period. Otherwise some people could have run into trouble, no question.”
Calgary MS patient Maralyn Clarke died recently after being treated for CCSVI at Synergy Health Concepts of Newport Beach, California on an outpatient basis. Synergy Health Concepts discharges patients as a rule without in-clinic provisions for follow up and aftercare. Post-procedure, Mrs. Clarke was discharged, checked into a hotel, and suffered a massive bleed in the brain only hours after the procedure. Dr. Joseph Hewett of Synergy Health recently made a cross-Canada tour promoting his clinic for safe, effective treatment of CCSVI for MS patients at public forums in major Canadian cities including Calgary.
“That just couldn’t happen here, but the sooner we develop written standards and best practices for the liberation procedure and observe them in practice, the safer the MS community will be”, says Dr. Gupte. “The way it is now is just madness. Everyone seems to be taking shortcuts. We know that it is expensive to keep patients in a clinical setting over a single night much less 10 days, but it’s quite absurd to release them the same day they have the procedure. We have always believed it to be unsafe and now it has proven to be unsafe. The thing is, are Synergy Health Concepts and other clinics doing the Liberation Treatment going to be changing their aftercare methods even though they know it is unsafe to release a patient on the same day? The answer is no, even after Mrs. Clarke’s unfortunate and unnecessary death. Therefore, they are not focused on patient safety…it’s become about money only and lives are being put at risk as a result.”
Joanne Warkentin of Morden Manitoba, an MS patient who recently had both the liberation therapy and stem cell therapy at CCSVI Clinic agrees with Dr. Gupte. “Discharging patients on the same day as the procedure is ridiculous. I was in the hospital being monitored for 12 days before we flew back. People looking for a place to have the therapy must do their homework to find better options. We found CCSVI Clinic and there’s no place on earth that’s better to go for Liberation Therapy at the moment. I have given my complete medical file from CCSVI Clinic over to my Canadian physician for review.” For more information Log on to http://ccsviclinic.ca/?p=866 OR Call on: +1 (404) 461-9560.
After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy.