Nerve regeneration after lasik

[Neerav1989]

Clair28 You might consider travelling to Boston and see Dr Pedram Hamrah, who has done a lot of research on Corneal Neuralgia. Do give me update about scrambler therapy and transcaranial magnetic stimulation. I did manage speak to the personal assistant of Dr. Pedram Hamrah and he told me that Dr Hamrah has been referring patients for this therapy. If it is something that will help patients like us, I can think of travelling to US as well

[Guest]

SAAG,
Its great to here that you have steadily improved. I just need to know for how long you used 100% serum and how many times per day ?

I used them 4 times daily, but don't remember exactly how long I did it for right now - I'd have to look back through my records, but I definitely used them for longer than a year - and if I weren't traveling fulltime now, I'd still be using them (the only reason I quit is because it was impractical to travel with a 10 month supply at a time).

Do you think this condition can improve ? I mean if there is abnormal nerve regeneration, is it possible to reverse it and make nerves grow normally. Because I see on this site that Buntbean has been suffering from this for a very long time. Thanks

I don't like to get my hopes up only to have them dashed... so I limit how hopeful I'm willing to be. That means I assume this will be a long-term condition and that I'll spend my life managing it.

But.

Logic would dictate that medicine will advance in my lifetime - so if I can find ways to cope now, it should get easier with time as available treatments improve.

And worst case if it doesn't for some reason, if I can cope now as I am now, then surely I can continue to do so, right? It's just a matter of learning to cope with how things are now, making the best of things etc.

****ALSO...My issues started in 2005 when I had LASIK, was bad but manageable for years, then in 2009 my eyes crashed and went to totally to hell - it was a very rough time (couldn't watch TV, couldn't keep my eyes open for the whole day because they hurt so much, spent several hours a day with cool compresses over closed eyes to cool the burning, stopped wearing makeup because it added to the irritation, started wearing moisture chamber glasses all the time, couldn't even WORK which was scary for me too) . Over the next 2 years or so (don't remember exact timeframe, so that's a quick estimate), I slowly improved - and now, I'm doing the best compared to any other time since I had LASIK (the high humidity environment is a huge part of that). So it's definitely possible to claw one's way back from dry eye hell - the key is to be patient, and be glad for any and all improvements as you notice them, no matter how small.

SAAG Thank you for taking the time to reply. I try to be as positive as I can but the whole situation is just so unbelievably shitty it gets hard sometimes.
I have the same question as Neerav1989 . If the nerves have grown back but grown back wrong, can they be fixed to grow back normally?

As far as I know, they don't know how to fix them if they grow back wrong. But I haven't done any research on this since I didn't have to once I found out mine regrew properly. So it's worth looking into, and even if you turn up nothing, keep looking because things could change.

[Clair28]

Neerav1989 Yeah I am keeping Boston in mind. I would want to write to one of them first. I asked about that scrambler therapy but i don't think the doctors I see are knowledgeable enough about it. I am trying to see a corneal neurologist but he is not available for a few months. I will be trying the Prokera June 1st so ill let you know how that goes

[Clair28]

Neerav1989 Do you know Dr. Hamrahs email address?

[Neerav1989]

Clair28 The email address is mlewis7@tuftsmedicalcenter.org
Do give me an update if you get to know something about scrambler therapy and transcaranial magnetic stimulation ? I am willing to travel to US if these therapies can be helpful.

[Clair28]

Thank you. Well the nurse from the neurologist called me today and said the doctor wont take me. he doesn't deal with what we need. So I'm kind of at a loss right now of where else to go besides my ophthalmologist and a primary care doctor. Why don't you want to see Dr. Hamrah for the therapy? or are you just trying to get a second opinion?

[Neerav1989]

Clair28 I do want to see Dr Hamrah but unfortunately I live in India. Travelling to US and consulting Dr Hamrah involved a lot of cost. and there is no point spending so much money and come back with nothing. I mean to say we don't know if scrambler will be helpful to patients like us. But if I were living in US like you, I would definitely book an appointment with Dr. Hamrah as he has seen so many corneal neuralgia patients. He could be of help to us.

[Neerav1989]

Clair28 Hi, any update on your condition ? Did you see Dr. Hamrah ?

[Clair28]

Neerav1989 Yes I went to him last month. The confocal showed nerve damage and not enough nerves in my left eye.
He put my on 70mg nortriptyline every night. (supposed to slowly try to work up to 70 mg) I got to 50 mg but not higher cos it gave me horrible dry mouth.
Told me to go back to 20% autologous serum and that it doesn't work without using it with a steroid so, Lotemax twice a week. He said the higher % autologous can cause pain and cause the nerves to grow back too fast in the wrong way. (I was using 50% for the past few months)
And he prescribed me the Truetear device. But its on a "manufacturing hold" till end of September because a lot of them weren't charging. I tried it in the office. was kinda painful sticking it up my nose but I think it reduced my pain for a few hours? Not really sure since my pain is so sporadic.
I feel the same, no improvement yet. But I am not expecting for these new treatments to give me improvement anytime soon. a few months to a year.
Dr. Hamrah seemed hopeful that this will help. He said most people can go off the nortyptylline in 9 months. So, wel see!

[Neerav1989]

Clair28 I am using 100% serum for last 10 months. Guess I should go back to 20%. I did try Nortryptiline 10 mg twice a day. But it gave me horrible dry mouth and kept me asleep almost all day. so I stopped it.

The problem for me is that no doctor in India has done any research on Corneal Neuralgia and they are not even aware about preparation/usage of serum tears. So please keep me updated with what Dr Hamrah advises you. I just have a couple of questions for you

1) Any idea how is Nortryptiline supposed to help with nerve regeneration ? I cant imagine taking 50 mg but I can probably take 20 mg if it is supposed to help !

2) How long he wants you to use Lotemax in conjunction with Serum ?

3) Did you ask Dr Hamrah about scrambler therapy and transcaranial magnetic stimulation ? Has he cured patients with these therapies ?

4) would like to know what are your symptoms right now ? I go through unbearable dryness sensations almost all day (possibly due to my nerves sending wrong signals to brain) and unrelenting burning many times. But I don't really feel pain in my eyes these days. Have not had pain in last 3 months.

Thanks

[Clair28]

Neerav1989 at 60 and 70 mg the Nortryptiline gave me HORRIBLE dry mouth but I'm ok at 50mg.
So, honestly Hamrah was kind of hard to have a conversation with so I had the same questions but i got very little out of him in terms of an explanation. He was just very serious and blunt.
1) from what I understood, at least for me, part of the pain is "fantom pain" so i think the nortrptyline is supposed to treat how I am percieving the pain. so over time it will change my pain receptors response to the nerves? Idk I think thats what he meant. Because I asked him if it was for treatment or just to mask the pain and he said "treatment"

2) He didnt give me a time to stop, so I guess as long as im using the serum? He said the serum wont work unless you use a steriod in conjuction to control the inflammation.

3) I did ask him about scrambler therapy and he was just like "that doesnt work". I was confused cos I thought that was like his thing and ive seen articles where he talks about it but he just dismissed that Idea so fast so i guess not.

4) Im glad you havent had pain in so long! that must be a good sign! for me my symtoms are pretty much the same. dry most of the time, and pain when I travel, or dont sleep well, or just do anything that is not my normal routine. I take a Kolonopin whenever I have pain and that helps a lot. something you could try

[Neerav1989]

Clair28 Sounds weird that he said Scrambler wont work. Because I did manage to send him an email sometime back and he did reply to my email saying that Scrambler or Transcaranial Magnetic stimulation might work.

What dose Dr hamrah recommended you for 20% serum ? I am planning to stop 100% serum and start with 20% serum/saline.

As far as my symtoms are concerned, I do not experience a lot of pain but I feel relentless drynees and burning. It's been 3 years since my Lasik and I have almost given up now.

[Clair28]

Neerav1989 IDK, he was very hard to converse with. He just said "no" when I asked about scrambler.
20% serum 8x a day. I know, its so hard. But don't give up!
Are you on Facebook? I think it will be easier if we talk there

[Neerav1989]

Clair28 Yes. Facebook would be better. pls send me a request on Neerav Ahir
or you can find me here https://www.facebook.com/Neerav.KA

[Neerav1989]

Clair28 Could you please give me your facebook id ? Need to talk to you. Thanks