Thursday, May 27, 2010

CCSVI Liberation in Egypt-The Good, The Bad, The Ugly!

First and foremost I would like to thank everyone who has supported my fundraising endeavors, to my family, friends, neighbors, and strangers for their generous donations towards getting this procedure done in Egypt. The complete cost of having this procedure done in Egypt cost over $15, 000 including the operation, transportation around Egypt, the medications, the airfare, and accommodations. Although, I still had to use every last penny of my savings, your generous support has greatly helped to make the experience of CCSVI liberation a possibility for me and my family.

Now, I’ll share about liberation in Egypt and will try to include every detail that I can remember.

Those darn expectations we all have! They either make us proud or really bum us out. I told everyone before leaving for this procedure that I had NO expectations about the results of the procedure or about Egypt. Having no expectations for these two events greatly helped my psyche because the outcome was better than I expected. However, I had the expectation that the liberation procedure would be a “piece of cake.” Perhaps for others it was, but for me it wasn’t that easy. I’ll start from when I arrived to the hospital:

Arrival: We went to one of the hospitals in Egypt where we registered. A nurse came down and greeted us and took us to our private room. The room was gorgeous with a huge ensuite and a fresh flower bouquet on the table. My nurse spoke English which was very helpful and explained that I needed to take a shower with an anti-bacterial wash and then change into a set of hospital pajamas and slippers. She then proceeded to take my vitals. Of course, as I went to have a shower the shower head fell off the wall and made quite a huge mess! The only thing my husband and I could do was laugh.

Following the shower, the nurse started an IV and gave me IV antibiotics and a pain medication as I had a very severe migraine that actually kept me from sleeping the night before. The nurse then proceeded to insert a foley catheter which was very uncomfortable. Their sterile technique was also not to the Canadian standards. I inquired as to why I needed the foley as I would be awake during the procedure. She explained that the procedure would be long and they could not stop for a bathroom break.

The doctor then came and greeted me and answered all of my questions. He gave me a booklet of information concerning the procedure, the possible complications, what to do post-procedure, the medications to take, and most importantly what to expect for improvement of symptomatology. The doctor writes that the earlier in the course of MS that you have CCSVI treatment, the results will be better. He also states that this procedure will benefit all forms of MS (RRMS, primary and secondary progressive) however the greater benefit will be for those with RRMS. Also, signs of improvements may be immediate or delayed up until about three months post-operative. There also may be some deterioration during the first three months up until the body adjusts to the increased blood flow. Lastly, there is a 20% chance of re-stenosis of the veins which will require another balloon angioplasty.

This particular doctor does not use stents due to the risk of migration. As a result the angioplasty performed is in excess of one hour or more. The doctor stated that if stents were used the procedure would only take 20-30 minutes. He feels that within the next year there will be a stent specifically developed for the internal jugular veins and azygous veins.

Procedure: I was wheeled into a pre-operative suite where I received more antibiotics and sedative through intravenous. From there I was taken to the OR. The anesthetist noticed that I was very anxious so decided to give me a lot of “happy medications.” I was almost put completely out and didn’t feel a thing other than some pressure in my neck and chest as the balloons were dilated. I could talk, I could participate by holding my breath etc. but I was VERY drowsy and had no real idea what was going on. The doctor exclaimed that I had the worst veins he has ever seen in his 30 years of practice. Apparently my azygous vein was twisted twice. So I now know that there is no correlation between vein stenosis/blockage and MS symptomatology and disease progression. The procedure took about an hour and a half.

Post-op: This is where my expectations let me down. I expected the procedure to be simple and that I would jump off of the bed, eat a meal and be fine. Nope! I was nauseated, dizzy, fatigued. My neck, chest, and back were so sore and I threw up about five times. I was given something for the nausea which greatly helped and was reassured by the doctor that the pain was normal as my veins had just been stretched from being nothing to a “normal” size. He then pulled the covers off of my feet and exclaimed, “LOOK!” My feet which were blue before the procedure (we have pictures) were completely pink. I smiled a bit, but still told him that I regretted the procedure because of how I felt. He told me that I was the best candidate for this procedure as I was young, my disease was in the early stages, and my veins were a disaster. He reassured me that I would feel better and better with each passing day. He also shared some very amazing successful stories of other patients that he has treated. As he shared these stories there were tears in his eyes. He told me that he makes little to no money from doing this procedure on foreigners but because he believes in the results he wants to help everyone out regardless of where they are from. He stated that he can not believe that Canada does not offer this procedure and mentioned that if even one doctor performed the procedure on one individual with CCSVI, they would become so addicted to keep performing the procedure as the results can be truly staggering.

Overall: The hospital was gorgeous, the staff were very courteous, attentive, and helpful. On post-op day one, my neck, chest, incision site, and back still hurt. I am no longer tired or nauseated and my feet are pink. My husband also mentioned that my complexion is also pinker. So from now, I will be taking the Egyptian equivalent of heparin subcutaneously for 3 days twice a day, Aspirin for a year, and Plavix for a couple of weeks. I have a second ultrasound scheduled for later this afternoon to ensure that my blood is in fact flowing from my brain. I will finally be able to see what “normal” looks like on the ultrasound scan.

Also, the other Canadian that was treated yesterday who could not walk without her walker albeit being completely dizzy and nauseated from the medications took steps without her walker yesterday! I can’t wait to see her today!

So would I do this again? At this point in time I honestly don’t know. I do feel warmer, and it feels like I can breathe easier. I hope that my symptoms either a) stay the same as they were forever and ever b)get better.

I will continue to provide updates as my symptoms improve or exacerbate as well as provide updates of how the other patients are doing.

14 comments:

  1. Thanks for the update. You are one brave Lady. Take Care

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  3. Hang in there Nicole...the first couple of days are the worst. I had a really sore neck and was nausated as well. I still have to take meds due to a reaction from plavix. The three month thing is making more sense to me as I have not had the best couple of days. But I am happy to report to you still no vertigo....safe travel.

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  4. you have been liberated ,congratulations ,your feet are warm and oxygen rich blood now flows properly thru your body , i am so happy for you thanks for sharing and keep improving

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  5. I hope you feel better and better as each day goes by :) Sounds like you NEEDED this surgery MS or not. How horrible our govt is treating us :( Who would you go see when you return for follow up etc.?

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  6. Glad to hear all went so well, keep rested and improving. We'll be waiting for your next blog.

    Love,

    Karen and Dave

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  7. Congratulations. I'm sure you will soon be feeling better and better. Gwen, UK.

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  8. I have read your blog I am in desperation with my ms, where does a person start who and where to contact some one in Egypt qne what are the cost I have given my number to your sister in law so if you could please phone me thank you so very much Jake

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  9. Can you please write an update. We are anxious to hear how things are going now. Also, if you could please provide details of how to contact your health care providers in Egypt. thx

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  10. Jake - get a hold of me at klynch56@earthlink.net. I schedule patients for Dr. Tariq in Egypt and would be happy to give you any info you need. ~ Kathleen (Hi, Nicole!)

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  11. 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. For more information visit http://ccsviclinic.ca/?p=838

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  12. David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
    “It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
    “I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
    After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904

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  13. http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be
    Over the past year, CCSVI Clinic and its researchers and specialists have been studying the Combination venoplasty/autologous stem cell infusion protocol developed by Regenetek Cellular Technologies with the collaboration of outside labs and bioproducts manufacturers. As laboratory techniques gain ever-increasing sophistication based on new scientific methodologies for enhancing somatic cells into preferred lineages in vitro, the therapeutic outcomes for patients with neurological disorders have also been improving. Deb O’Connell who was treated at the Clinic in mid-September, 2012 recovered so quickly from her serious long-term degenerative disease condition that she experienced a wave of improvements while still in the hospital.
    It’s a matter of medical record that Deb had been wheelchair bound for 10 years (completely non-ambulatory) with multiple co-morbidities when she entered the program on September 9; she was 9.5 on the EDSS scale as assessed by a neurologist, was down to 80 lbs in body weight, could not breathe effectively, speak, or take in food by mouth due to dysphagia. Her pain was chronic and significant. When she left the Clinic on September 24th , she walked out of the doors and into a waiting van to go to the airport. At the time of her discharge from the Clinic, she could breathe normally, effectively speak once again, eat any types of food she desired and her pain had all but disappeared. At the time of this writing she is back home in Canada and reports that she continues to recover (especially her contractured hands), shows no signs of new disease symptoms, and has gained 18 lbs since her therapies, less than 3 weeks ago. She has now begun a regular physiotherapy program and is gaining walking strength and balance. The recapitulation of the course of her disease (MS) within days, provides evidence that the in vitro requirement of cell pluripotency has correctly been identified with respect to adult cell source origin, time, and manipulation in culture. http://www.ccsviclinic.ca/?p=1084
    http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be

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  14. A complete and actual demonstration of the Combination Therapy Protocol may be viewed here.All cellular material came from adult autologous sources and cells infused intrathecally were grown in vitro; first isolated, expanded, characterized, and subsequently administered as mesenchymal stem cells in all 16 patients. The mean dose for intrathecal infusion was 180mil cells (based on specified avg per kg/bodyweight). Clinical-grade mesenchymal stem cells (MSCs) were produced under good manufacturing practice (GMP) conditions using standard operating procedures based on international standards as monitored by the Indian Ministry of Health. Bone-marrow mononuclear cells were separated by density gradient centrifugation. MSCs were characterized in accordance with ISCT recommendations. The stem cell line used in all 16 MS patients was grown under recently developed protocols and differed in type and number used in the treatments prior to March 2012. Culture techniques and laboratory data is proprietary.For more information please visit http://www.ccsviclinic.ca/?p=1194 or you may call the toll free number at 888-468-1554 or info@ccsviclinic.com

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