Looking For Input

[shannon]

Hi all,

Two questions:

1.) I'm planning to have lasic eye surgery next month. I'm not being put under, so I don't anticipate any problems with POTS. Just curious, though --- have any of you had the eye surgery? Can you think of any reason why POTS would cause problems? The eye doctor didn't seem concerned, but (of course) he has no idea what POTS even is.

2.) Last week, I had a new symptom. When I opened my mouth to talk, my words came out funny (like my tongue wasn't cooperating). I went to the doctor, but he just said to go to ER if it happens again. I'm just wondering if any of you have experienced this symptom.

Thanks,

Shannon

[pickledfairy]

Shannon,

I haven't had eye surgery so i cannot offer you any advise but I can send you prayers. I have had the strange tongue symptoms. It feels like my tongue is thick and won't wrap around certain words, people also tell me that my words are slurred. I also tend to have muscle twitches at the same time, but not always. I have been to the ER and they originally thought that my electrolytes were off, but they were not. After three liters of fluids it seemed to get better. When it happens I usually try to drink more, but it doesn't always help. I am suspicious that there is something else up especially since I have been having trouble with my gastroparesis for four weeks and have needed IV fluids for dehydration, but have not had any slurred speech episodes. So, I am confused. But I would suggest going to the ER and getting your electrolytes checked and to have them look for further causes. Good luck!

Sheridan

[Rachel]

Hi Shannon,

I've never had the eye surgery, but I can't think of any problems it would cause with POTS. Do you have a POTS doc that you can ask?

Sometimes I do have difficulty speaking also. Like Sheridan said, it feels like my tongue is "thick." It just doesn't want to move the way I want it to move. But this has never been a severe or long lasting problem. It happens mostly when I'm very tired, I think. And after rest the symptom goes away.

Good luck with everything. I hope your surgery goes well.

Rachel

[stampingamy]

Hi. I definitely have the problem with speaking. Sometimes the words are in my brain but won't come out my mouth. Sometimes I can't begin to find the word I am looking for and talk all around it. I am a speech therapist so it really annoys me!

I haven't had the eye surgery, but let us know how it goes.

Amy

[Tammy]

Only thing that comes to mind is having dry eyes, if that is one of your symptoms , but if you've already been given the go ahead for the surgery, probably not an issue. One of my friends that has FM just recently had it and it took a while for her eyes to 'clear' vision, so she just had to do extra drops thoughout the day to help things along.

[goldicedance]

I had LASIK surgery after I was diagnosed with POTS. It did alot to boost my morale. My vision was horrific without glasses. In fact, the frames never could hold such thick lenses.

I consider myself blessed to have had this surgery. Be sure you have a skilled surgeon done in an eye center where loads are being done.

Good luck,

Lois

[Tanzanite]

If you have EDS DO NOT have laser eye surgery. I asked about this to my optician, he said my eyeballs would disintergrate

[goldicedance]

I have had Lasik surgery. I also have been diagnosed with EDS. Perhaps you should check with your EDS doctor as well as your opthamologist.

Lois

[MightyMouse]

Please be sure to have a thorough evaluation by a corneal specialist before having Lasik if you have ANY suspicion that you might have EDS. I was planning on having Lasik as well, but my evaluation revealed that my corneas are WAY too thin to have Lasik and had I gone to the cheaper surgeons at the mall, I could have lost my vision and/or needed new corneas (transplants).

I am not a candidate for Lasik -- and never will be. Nor am I a candidate for other types of correction surgery that have a quick recovery.... the only type of surgery to repair my vision would have involved surface etching of my corneas which would have had a painful 2-week recovery period, which the doc said I would need to be medicated into a stupor in order to be comfortable. Some of you may recall that I inadvertantly burned both my corneas a few years ago, and spent two days in excruciating pain while my pupils spasmed like mad and my eyes healed. Even on pain killers, I got little to no sleep--knowning how much that hurt (and I can handle more pain than most people) I wasn't too keen on spending 2 weeks in that pain zone.

Additionally, because of my thin corneas, my surgeon would only do one eye at a time just to be safe and make sure that my vision in the corrected eye was excellent before doing anything to my other eye--this would then have meant a month of being out of work, in total... to me, not worth the torture and expense.

Please don't take any chances with your vision. If your corneas are normal thickness, the recovery is quick and the surgery is pretty easy. Teri's had 4 laser surgeries--one for each eye, then one "touch up" on each eye--and all times, she was fully recovered in one to two days, with near perfet vision just hours after the procedures. Her case is a bit more complicated b/c she has a synthetic (acrylic) lens in one eye as a result of viral infection of both eyes called "pars planitis". The infection burns itself out over a period of years, but left one eye with a cataract.

Way better to be safe than sorry--if Teri hadn't forced me to go to her cornea specialist, I could have made a terrible, terrible mistake.

Nina

[goldicedance]

My surgeon did measure the thickness of my corneas. Mine were thin, but not too thin. I don't think I am a candidate for a touchup. However, I had them done about 6 years ago. I needed my glasses just to brush my teeth. I would go to an opthamologist who specializes in Lasik. I would not go to a Lasik center in a mall with discount prices. Your opthamologist should be the one that determines whether you are a good candidate for Lasik.

Lois

[MightyMouse]

My opthamologist doesn't have the equipment need to accurately measure corneal thickness to do corneal mapping--rather, the doc who does Lasik as well as other corneal surgery is the one who did this for me. He is a subspeciality in opthamology--just corneas. Teri also has a opthamologist who just deals with retinas (he's the one who was her primary doc treating her viral eye infection). Like Lois said, I would avoid going to any doctro that seems to hurry you through the process.

Lois, my corneal specialist has written about EDS and thin or fragile corneas--and he still does some work with Wills Eye Hosp. in Philly, so I really lucked out with him knowing exactly what he should look for given my medical history.

Nina

[shannon]

Thanks for your replies, everyone! I'm sorry that I have not been able to come online in a while.

The way some of you described the speech problem --- as having "thick" tongues and slurred speech--- that was exactly how I felt! I'm sorry to hear that you had the symptom too, but also a little relieved to know that it's probably just part of POTS (and nothing new).

As far as the eyes, I was evaluated by an opthamologist, and he said my corneas were fine for the surgery. I may double check with my neurologist, but I think I will go ahead and do this. Some of you mentioned EDS.... I'm not sure what that stands for. Anyone?

[MightyMouse]

EDS= Ehlers Danlos Syndrome

there are a few different types; some people only have minor symptoms and can live their whole life without problems--others have a multitude of issues.

FYI, there is a list of acronyms always posted at the top of the forum in the Frequently Asked Questions topic (subtitled "help yourself to answers").

Nina

[shannon]

Thanks, Might Mouse. We all appreciate the knowledge you bring to the forum!

After reading all of your replies, I decided it would be advantageous to have my eye doctor contact my neurologist, but he refused to!! I told the receptionist that I would cancel my surgery unless the opthomologist contacted my neuro first. The clinic made me feel as though I was completely overreacting. It was very difficult to stand my ground on this one, but I kept reminding myself that my doctor is here to serve me and that I have every right to ask him to consult! Anywho, I decided to contact my neurologists myself and just postpone the surgery until I hear back. I am just feeling very frustrtated with the elite aspects of the medical field .... my eye doctor is just too full of himself to ask for a fellow doc's opinion. To me, that is completely unethical. UGH!

I guess I just wanted to vent. I'm sure you've all had similar experiences.

Shannon

[smiles]

I also have slowed and slurred speech. I do not have the feeling of a thick tongue. i just can't seem to get my brain to make the connection to my mouth and tongue to get the right thing out. My brain seems to slow sometimes too. Sometimes I struggle to find the right word. I am unable to tell I am having this problem till It gets real bad or someone tells me. It is very frustrating for me. I happens more when I am tired or sick or in a flare up. No fun usually. My kids do get a hoot out of it sometimes. I act like I'm drunk they say.