Botox to slow the eye muscle / movement

[ruthskippy]

Hi my 1 year old has CN. A friend asked if they could inject Botox to slow the muscle ( like they do with cosmetic surgery to stop frown lines in faces). I think I heard that cosmetic surgery needs to be redone every so many months as the effect "wears off".

Has anyone had this Botox procedure done on their eyes or know anything about it ?

My 1 year old can now track a 4 inche white ball moving slowly about 3meters away from her ( amazing when I think she ould only notice things about 12 inches away from her when she was 5 months. Appreciate your ideas for toys to improve her vision.

Grateful for your replies
Thanks Ruth

[John Sanders]

Hi Ruth,

Botox is an option, BUT:

1) I don't know anyone who has used botox for nystagmus.
2) It is a dangerous substance. One researcher I know says "I wouldn't let anyone inject botox anywhere near my eyes".
3) Botox may slow the eye movements, but as far as I know it does little if anything to improve vision. (I would be interested to hear from anyone whao has had a positive experience with botox, though).
4) As you say, botox injections would need to be repeated.

It's interesting that you posted this in October and no-one has rushed to say how they have benefited from botox in terms of nystagmus. That probably speaks volumes in itself.

John Sanders, NN committee

[kathy williams]

I think the answer lies in the 'cosmetic; aspect. Nuff said in one way! I think that there is also a risk for a child where tissue is both so delicate and the child is growing.

[igorpro]

Botox *can* be used for treatment of nystagmus, but only in rare cases. Typically, its used for patients who suffer from a stroke, more specifically a "brain stem" one. The problem in your case is that this procedure is usually done on one eye only, to avoid diplopia. Having all that in mind, plus the fact its a 1 year old patient - I personally wouldn't go for it.

[John Sanders]

I would endorse igorpro's response above.

As I've said in a previous post, to my knowledge botox has only limited applications in treating nystagmus. As a rule these are in cases of Acquired Nystagmus due typically to multiple sclerosis.

I have never heard of botox being used to treat cases of Congenital Nystagmus.

John

[Fola]

Hello,

I've never heard of botox being used for nystagmus, in fact, my Consultant told me it wouldn't help me. However it is used for squints, so maybe that is what your friend was thinking of.

I had squit surgery at Moorfields earlier this year. Last year I had 2 botox injections to treat the squint. According to what my Consultant told me at the time; some people have the injections rather than the surgery; it really depends on the strength of the squint. The injections do need repeating every 6 months or so, but seem to work very well for some people.

Hope that helps.

Fola

[surferbruce]

I had blunt force trauma to the brain in 2004. I aqcuired rotary and pendular nystagmus with extreme double vision. After years of research I decided on trying botox to my eye. Please note there are a few different types of procedures used. I chose to do both eyes to determine dosage amounts and what the effect would be so as to determine which way I should go in the future since treatments can last from 3 to 6 months varying on the intenaity of the nystagmus. I went to two specialised hospitals to confirm my exact problem before decididing on botox. Please not I would reccomend doing only one eye. But I have had 5 treatments 4 using the needle injected below the eye then shooting the botox aaround the optic nerve thus paraylizing all six muscles. I have just tried a safer method not using a needle but the problem which can happen using all procedures is where the eye lid droops and can last for months. So my advice is do your homework because their are many good trained eye Drs. out there but you need to have your complete list of questions to ask before making such an important decesion. For the record my nystagmus slows almost 99% every time, be prepared for the problem with the eye lid and keep your eye lubricated so as not to develop any type of corneal ulcer. Bruce Mc

[ant93]

I had blunt force trauma to the brain in 2004. I aqcuired rotary and pendular nystagmus with extreme double vision. After years of research I decided on trying botox to my eye. Please note there are a few different types of procedures used. I chose to do both eyes to determine dosage amounts and what the effect would be so as to determine which way I should go in the future since treatments can last from 3 to 6 months varying on the intenaity of the nystagmus. I went to two specialised hospitals to confirm my exact problem before decididing on botox. Please not I would reccomend doing only one eye. But I have had 5 treatments 4 using the needle injected below the eye then shooting the botox aaround the optic nerve thus paraylizing all six muscles. I have just tried a safer method not using a needle but the problem which can happen using all procedures is where the eye lid droops and can last for months. So my advice is do your homework because their are many good trained eye Drs. out there but you need to have your complete list of questions to ask before making such an important decesion. For the record my nystagmus slows almost 99% every time, be prepared for the problem with the eye lid and keep your eye lubricated so as not to develop any type of corneal ulcer. Bruce Mc

Would you say your vision improved after using botox? i find this to be very interesting as i have CN, and i am wondering whether this could be a good option for me, although i would love to have better vision, i would also like knowing the movement of the eyes slow down, when you have your procedure is there any anesthesia used?, also wondering where/who would i contact to talk about/perform the procedure as i most likely dont think a botox clinic would handle this type of matter. please let me know!
Thanks!

[loopy67]

My son is 14 and has CN. He turns his head to the right to get his null point. As a result he can get acute neck pain. Moorfields have talked about a possible operation in the future to re-tension the muscles which should mean his head is straighter. However, they want to wait until he is older and i'm happy with this as they have been clear there are risks involved.

With regard to Botox - they said they would want to use Botox to isolate the muscles and they will then be able to ascertain whether the operation would be successful. This of course is reversible over a few month unlike the operation. What puts me off (and my son) is that you have to be fully awake whilst they injext your eye. It sounds horrific and I very much doubt he will ever get it done.

He is waiting for an appointment to possibly try contact lenses. The weight can sometimes help steady the eye.