nose1 wrote:
First, let me say this is a great question and I think you really have the proper perspective in regards to what you need to do to deal with having ENS. Looking for constructive solutions/treatments is a big part of what we need to do to overcome this.

As you allude to in your question, there really are two main areas that regenerative medicine needs to address. I know that in a previous post I mentioned not to get too hung up on ENS vs ENS type, but this is a scenario where from a high level there is some distinction that needs to be made. For those with full ENS with turbinates completely missing, there really need to be some emphasis on complete regeneration of turbinates similar to something like growing a new organ. There needs to be a way to regenerate the bone, submucosa as well as mucosa. This is obviously a more difficult but important task.


For ENS-type, it is somewhat different. In this case, I don't think it is necessary to determine what exact percentage classifies as ENS vs ENS-type, but consider people that have at least some to most of their turbinate tissue remaining. In this case, the emphasis is on regenerating (or healing) the existing turbinate. It is not simply a matter of enlarging the turibinate although this may be necessary for some, as emlargement can already be done with Alloderm or Cymetra (or other substances). For some people, this provides a significant improvement and for others it does not. What has to happen for many with ENS-type is that they need improvement with moisture and sensing the air. Some people think it means the mucosa has to be healed and others think it is a matter of regenerating damaged nerves. IMHO, it is not as simple as fixing either of those but ability to fix both. I think that there is a connection with the mucosa health in ability to sense air and then an issue with transmitting that sensation to the nerves. So I think the mucosa needs some regeneration from atrophy. I think a big part of the underlying issue is scar tissue within the turbinate. I think the scar hinders vascularization to provide nutrients to the mucosa as well as hinders nerves to grow into the scarred part of the turbinate so that the nerves can transmit the sensation from the mucosa. Since we know that some people with turbinates fully removed, do not have ENS, there is the hope that by improving the overall mucsoa and nerve system, that these techniques may translate into a way to help some with full ENS. So in brief, I think there is a big emphasis on the need to heal scar tissue which may be enough for some people to help heal the mucosa and nerves. But some people may also need additional help with things like growth factors that help to improve vascularization of the mucosa/submucosa and for things like EPO which we hope will improve nerve regeneration.

Thanks Nose1. I am relieved you thought it was a good question and that it made sense. When one first starts to research a medical condition, it is hard to assimilate the information. Luckily I have had many years of practice for family members conditions and some of my own, although nothing as serious as this for me. I can make sense of Pubmed articles and medical books via google. So, at least I am that advanced! image I did not intend to do so, but seeing the science that is out there in regenerative medicine and reading old posts from almost 10 years ago dreaming of stem cell treatment, I really think it is closer than ever, and I find I need to search out the current research.  I suspect that this flurry of activity and hope may be just part of my process adapting to ENS, but I don't see the wisdom in wasting the energy and will. Since for me there is so much uncertainty in the treatment and prognosis, it seems a good way to cope. With my father's cancer, I investigated all the cutting edge treatments, where they were and we went to investigate. While this may be more difficult, I really need to engage in a similar way.

I still don't understand the particular types of research, studies, clinical trials etc. that I should be looking for that may have application for ENS. But, maybe that will come with time as I read up more. Do you have any in mind?

I really need to be evaluated properly in any event . I did contact Dr. Houser a in January, but was told that he was on hiatus until the end of March. I see on the forum there has been some controversy. But, I'll contact again in a month and see what the office has to say.