general anaesthesia & collagen implant

    • Anonymous
      November 14, 2008 at 4:43 am

      hello everybody

      I had GBS/Miller Fisher Variant exactly 6 months ago. I’ve just been told that I have scarring of the vocal cords caused by the intubation ( I was intubated for 1 week but they put the tube 3 times, the 2nd time because it had moved, the 3rd to fit me with a more comfortable tube) and the ENT doctor and Speach & Language therapist suggested that I have another exam of my cords under general anaesthetic. They also said that if they think a collagen injection may help they will do it during this examination.

      I’m worried about the general anaesthetic and I wonder if I should wait until I’m fitter. I’m still recovering and suffer from fatigue so I feel I’d be putting my body under strain. I’m afraid that the anaesthetic may trigger another episode of GBS.

      I’m also worried about the collagen, which usually comes from bovine and can cause immune reactions. I’ll talk to my neuro about it.

      I would be grateful if you could share your stories or give me advice about general anaesthesia and collagen. (My ‘gut feeling’ is that it’s too early for me to do this and I should wait for another 6 months)

      thanks a lot for your help

    • November 14, 2008 at 10:34 am

      I have no experience with your question, but I do feel your angst regarding the aneasthetic. I think about that all the time. I say follow your gut. Is there pain or difficulty swallowing? What would the collagen aid in? About the test, the anesthesia might be twi-light, I know they use that when they do endoscopies. Good luck in this very difficult decision, let us know how it goes.
      Dawn Kevies mom

    • Anonymous
      November 14, 2008 at 9:38 pm

      I too do not have enough experience to give you the correct answer. However, I do think that GBS hits people who have put their body under extreme stress -such as immunizations, being sprayed with bug spray, stress. So I would vote for not doing anything major IF you don’t have to. Give your body time to recuperate. I remember my 90 year old aunt who told the doctor’s office when they called to set up a yearly appointment, “I’ll come in when I am sick.” I think that is why Aunt Till lived to be a healthy 90. I just had dental xrays and there showed up what the dentist thought was a Maxillary sinus polyp. But there was a similar large circle on the other side. She excused that one as a glitch/a reflection..something that wasn’t supposed to be there. She advised me to see an ENT. I have no symptoms and am going to let it ride. My body needs me to protect and baby it – it has only been 2 years since my second GBS -and in GBS time, that is not long.

    • Anonymous
      November 15, 2008 at 4:31 am

      Thanks Dawn Kevies mom and Caroline. I’ve got some news.
      The Ent doctor said it’s too early for a collagen injection, they are usually done after at least 1 year to make sure the vocal cords heal as much as they can by themselves.

      The latest I can have the microlaryngoscopy under general anaesthetic is 20 January 09. I think that for now I will book this date and then see how I feel in january and maybe cancel it if I’m still not up to it. I think the doctors think I’m paranoid but I will go with my gut feeling. This whole thing has put me under a lot of stress and it’s not good for my body. I’ll write again after I discuss this with my neurologist and the ent doctor.

      Thank you for your support, it means a lot to me.

    • Anonymous
      November 15, 2008 at 9:52 am

      Dawn Kevies mom

      sorry, forgot to answer your questions. I do not have any difficulties swallowing, my problem is in the voice production, my voice is low volume, breathy and I can speak for very little time. to speak I strain my neck and throat muscles (severe muscle dysphonia) to compensate for structural and maybe even neurological problems.the collagen injection would bulk up the vocal cord and hopefully make it close properly so that a louder and clearer voice can be produced. the microlaryngoscopy is to find out exactly what’s wrong with my vocal cords, it is a more accurate examination.

    • Anonymous
      November 15, 2008 at 8:03 pm

      It has only been six months – do you think you have given your body time to heal? I find that the body is an incredible machine and can usually take care of itself if we just give it time and good nutrition. I suggest that you try some visualization. I have read many studies on this and the placebo effect. There is one story told by Dr. Larry Dossey of a young boy who had cancer. He would go to the doctor’s office and do a visualization to get his body to get rid of the cancer. He visualized a rabbit going into a garden and pulling out the carrots(cancers) and eating them. One day he goes into he office and won’t do it. WHen the nurse tried to motivate him to continue, he says he can’t because there are no more carrots for the bunny to eat. They tested him and the cancer was gone. What would it hurt to try this – visualizing that the throat cells are happy, getting stronger, and regenerating. Or you could send your throat healing white light. And then have faith that it will happen. What can it hurt? I became a REIKI master and was amazed that it really works. I even did REIKI on a VCR machine in the classroom without the students knowing and it got the tape unstuck. I did not think it would do anything, but it only took a second to try.
      IF you get a chance, read some of Dr. Larry Dossey’s books. Inspiring.

    • Anonymous
      November 16, 2008 at 4:12 am

      Hi Carolyn

      thanks for you message. I agree with you, I should give my body plenty of time to heal. Conventional medicine doctors don’t really understand this.
      I tried meditating on my vocal cords, visualizing them and I’m doing mantra meditation twice daily, yoga daily. My main problem is to keep focus as my mind gets crowded with thoughts . Tomorrow I’m seeing a craniosacral therapist for the first time. I never tried this therapy before, but I was told that it promotes the body self-healing. He will also will check my diet and he asked me to bring the names of all the supplements I’m taking.

      Are there any particular books that you would recommend?

      Thanks again for your advice.

    • Anonymous
      November 16, 2008 at 10:24 am

      Hi mdm,

      In response to your question regarding anesthesia, before you have a procedure, please make sure your anesthesiologist is aware that you had GBS.

      I had surgery a few years ago and I met with the anesthesiologist to ensure he was aware of my GBS and (benign) heart murmur. I think they tend to use different dosages/and or anesthesia.

      Best wishes on your procedure.

    • Anonymous
      November 16, 2008 at 11:54 am

      thanks Tina

      I’ll have an assessment with the nurse before the procedure and I will make it clear that I want to see the anesthesiologist before anything is done to me! I’m really scared. It has just occurred to me this week that my GBS experience was very traumatic. I guess this explains my fear of going back to hospital and being unconscious.

      thank you for your support 🙂

    • Anonymous
      November 20, 2008 at 2:48 pm

      I see that you are well on the path. I was not hospitalized for my GBS – I chose to crawl on my floor, which was not as full of other people’s germs. I am certain that my high doses of supplements kept the GBS to the point that I did not need a respirator. But just barely. I eat according to my blood type. After 35 years of passionately reading wholistic health books, I find that it all starts with your food and your supplements and your blood type. OVer the last 3 weeks I have been missing heart beats. I figured it out that it was vitamin D that was causing it. You have to take calcium with it. I have tried visualization but am now going a step further with the book SCIENCE of MIND. I also do REIKI healing. If you have any questions about any of this, let me know. Have you tried doing reflexology on your hands and feet? This helped me when I had GBS to keep the inflammation down. Since you are in the UK, how about seeing a Naturopath – I went to one years ago and she was great. I feel positively that your problems will all work themselves out.

      Carolyn “medical intuitive”

    • Anonymous
      November 22, 2008 at 11:21 am

      Hi Carolyn

      thanks for your advice
      there’s so many complementary therapies out there, this week I saw a craniosacral therapist and I left the session feeling very well both in my body and my mind. I will see how this therapy goes and may try others like reflexology. I’d like to try lots of different therapies right now but I have to choose & wait because I cannot afford too much of this. Acupuncture also appeals to me but for now I feel more drawn to less invasive therapies. I read a bit about Reiki and it sounds great, you have a wonderful skill. read a review of the book science of mind and it looks good.

      best wishes

    • Anonymous
      November 23, 2008 at 12:08 am

      I tried acupuncture years ago but it did not work at all for me. I still believe in it but it does get expensive and if one continues to put something in the body that it does not like, acupuncture will not work well. Reflexology can be used while you are driving or watching the “tellie”. I taught lots of friends how to use it – it gets rid of headaches, sore throats, etc. JUst find the part of your feet or hands that hurt and then massage them until the pain goes away. Keep it to 20-30 minutes. Reiki masters used to charge 10,000 dollars to get their attunements. Today I see them charging 1000-2000 to become a master. I received the instructions and attunements in Tampa for much less – as long as I pass it along. I think it is criminal to charge exorbitant prices for something that helps others.
      As for Dossey’s books, I cannot remember which ones I have read – probably Reinventing Medicine was one of them. He was in Tampa with DannionBrinkley who wrote Saved by the Light. Dannion was on heart medication that was so strong it was amazing he was still alive. But he looked great, because we are all energy and thoughts are things.