Hydrodistention, anybody use it as thearpy?

[toby75]

Before I was diagnosed with IC I had no idea what it was. I had endo surgery last January and the endo doc had a urologist come in during surgery to check my bladder b/c I had complained to him that it always felt like I had a bladder infection and I never did.

After surgery, the uro told me I had IC, first time I had ever heard of it. He gave me Elmiron, urositk 10, and Vistral to take. After a month of taking the month's prescription, I felt better and stopped taking it b/c I felt fine adn plus Elmiron is not cheap.

In July I had a surgery that involved going in the back of my neck. After that surgery, my IC came back with a vengence. In august I started taking all my meds again, adjusted my diet and my GYN gave me a jumpstart with 13 bladder instills of elimiron and lidicaine. Still no improvements in my bladder.

So I was thinking back to what my have helped my bladder the first time and after reading that hyperdistention can be thearputic, I am thinking that is what helped my bladder the first time.

So my question is how many people use hyperdistention when their IC flares so bad they can't get into a remission, where pain pills are not needed daily, and it helps them.

I am at that point now. I have an appt March 13 with an "IC" specialist, That I have read a lot about him and he sounds pretty good. He is in greensboro NC. I am going to discuss with him would it be worth it or would some other rescue cocktails be tried first.


Thanks for all the replies I get from you all :grouphug:

Amy W

[ICNDonna]

Hydrodistention definitely helps me. I will be having another one on February 23rd. Hydros have been helping me for 31 years now.

Donna

[hoping4acure]

I am with Donna...I found great relief with them and each time I would go longer and longer with out a flare. The last time is when she told me she saw me going into remission for a very long time. My opinion would be to go for it. ;)

Good luck...plese let us know.

[toby75]

Thank you Donna and Need2heal. My last hydrodistention was under general anesthesia b/c I was having endo removed. Do you have to be put under general, or can they just give you a cocktail, like you would have when you have your wisdom teeth pulled. You fall asleep and don't remember a thing. I really don't thank I could do it wide awake.

[mary124]

My last hydro was in November. They help me a lot. (usually for about 6-8 months).

Donna: Good luck on the 23rd. (Wow, 31)

[Babs RN]

I have had great luck with hydros in the past as well.

Hugs,
Barb :grouphug:

[hoping4acure]

I don't do well with General. They drugged me heavily, I never remembered any of my procedures. They will not allow you do to it wide awake, it's to painful. Good luck!

[ICNDonna]

I almost always have a spinal for a hydro. I will see the anesthesiologist on Friday to make my wishes known.

Donna

[toby75]

If I have a hydrodistention done, can they also do a heaprin combo cocktail as well? Not DMSO, though, my sister had that done and it did not help her at all and we are like carbon copies of each other with the same health issues.

[lilbluedevil82]

I have had one hydro and am scheduled for another on March 8th...mine helped me alot! I had relief for about 6 months! Good Luck!!!

[ISONormal]

I'm so glad you asked this question. I wanted to hear what Donna and the others said. Just yesterday, I realized that when I had my last real remission (4 years ago) was at some point after the first and only hydrodistention I've ever had. I'm not sure how close the two events were. I think the hydro was in April or May 2001, and I know I went into a real remission (no symptoms at all) that whole summer. So here's some questions I could use your help with. How long after your hydro did you go into remission? I know there's pain immediately afterwards and for a few days, but then what happened to you?
Thanks all. You're the best. You're educating me and my urologist!

PS I know it sounds silly that it just occurred to me that the two might be linked but I was new to IC then, I had only a mild case to begin with, and my doc did not link the two himself. Plus, I'm dense. :)

[ICNDonna]

I'll be having a hydro next week. I'll post my progress post op. I have a tendency to forget about the discomfort afterwards because I know I can plan on feeling good for months.

Donna

[ISONormal]

Great! Thanks, Donna. You're always so helpful. It's appreciated.

[Katherine]

I feel bad a few days after but then I well for a few months to me they are worth it.
Good luck Donna and to you also.
Katherine

[hoping4acure]

I remember my last hydro in June, It took me about 10 days to feel normal again, and then a couple of weeks after that, I didn't feel my bladder at all.

Donna: This is a great idea you posting your progress. I know what you mean...that you know you are going to feel great, so you kinda forget about that part of it.

[toby75]

WOW, thanks to all, I think I have made up my mind on what treatment I want done, as I have the choice to choose what I have done to my body. After two surgeries last year. One being laparscopy for stage 4 endo, removal of 40% of my left ovary and 30% of my right ovary and a cystscopy, done out of my network at the Endo Care Center in Atlanta (excellent docs by the way!!).

Second surgery, yet again done out of network at The Chiari Network on Long Island for decompression surgery of my brain for Arnold Chiari Malformation. (removal of c1 vertebra, removal of a small piece of skull, titianium mesh plate put in to prevent brain slumping....this was to make room in the back of my skull for my spinal fluid to flow b/c it was blocked, caused horrible headaches, and neurological disorders).

So I have seen every kind of doctor there is and it's ALWAYS the specialist of a certain disorder, that are the most kind and caring doctors, I have experienced.

I want the hydrodistention done again b/c it helped before and I am seeing a Uro out of state again who has a speciality or strong interest in IC. I hope it agrees with me.

Thank you all, I will let you know how that appt goes, it's not until March 13, the consult that is.

[ISONormal]

Hey, Donna,
I just read where Dr. Moldwin says he only does the one hydro and doesn't use them for treatment. What do you think of that?

[hoping4acure]

Have to jump in here. I was getting hydr's on regular basis also, and my URO never categorized them as treatments. It always said on the hospital notes that they were theraputic for me and helped relieve my IC symptoms. She said I could get 3-4 a year if I wanted to. I am also stumped why your doctor will only do one of them. :hmm:

[ICNDonna]

My uro doesn't routinely use them for treatments either, but because I benefit so much, we will continue doing them as long as it helps.

Donna

[creatingkarma]

I just had my 4th hydro in January. They also lazered the nerves in my bladder neck to make them not so sensitive for a while. Before this last hydro, I was having bladder spasms daily & since then, they're almost non-existant! Yea! I've also gone from having to go every 20 minutes to having to go every couple hours! Whooo-hoooo! I'm still having a lot of urethra burn from it, though, but that's getting better every day.

[ISONormal]

need2heal and Donna,
Ah, I see the distinction. That's an important point. Thanks for making that clear. I haven't pursued having an additional hydro with my doc, but I think it might be worth trying.

Thanks!

[marsi4]

I had a hydro distention yesterday and had my bladder dialated and in the end of the procedure I had my first dmso instill. I had terrible stinging burning in my vaginal area only. Today all the vaginal discomfort has ceased and my bladder feels much better. It is the closest to remission as I have been in the last year. I don't know how long it is going to last but I'm hoping I can feel this way for a few weeks to get a break that I really need. I was so afraid of trying dmso I kept putting it off for months when I was suffering terribly and should of had a bladder instill then. I'm glad I finally did it. I have benefited from both procedures.

Marsi4

[Oxana]

Marsi, it's great! I'm very happy you are feeling better. I wish you have it for long time, forever. :grouphug:

[bladder Issues]

I almost always have a spinal for a hydro. I will see the anesthesiologist on Friday to make my wishes known.

Donna


Donna...then are you awake with the spinal?
Carol

[ICNDonna]

Yes, I will be awake and able to watch the procedure on a TV screen in the OR. I talked with the anesthesiologist and he agreed with me that for me a spinal is the best way to go. I do get relaxing drugs before I go to OR so it doesn't bother me to be able to watch.

Donna

[hoping4acure]

Donna,

Good luck tomorrow with your hydro, when your feeling better, please let us know how you are doing.







:grouphug:

[bladder Issues]

Yes... good luck your the procedure tomorrow... I am to check back with my doctor next month, so far I am doing better...but he did say the hydro lasts for about 6 months to about a year... I know it made a world of difference for me..I can go out now and not worry about where the bathroom is..just have a good time ...
The only other question is how long do you have to stay after a spinal??? you can't walk for a while after it can you???
Thanks and good luck....

[hoping4acure]

You don't have to get a spinal. I never did. Ask your doctor he/she will discuss what options are right for you.

[hoping4acure]

Hi Donna: How are you feeling post-op?

[BigFig]

I am seeing my uro on Monday for a three month follow-up. I have been trying everything I can to avoid having to go to the extreme of having a hydro. He has informed me that he recommends the hydro and this is the next step. So, my question is that I don't have a frequency or urgency problem (just everything else associated with this disease) and is hydro used only for patients with these issues?

[ICNDonna]

I spent part of today watching family members rebuild my husband's wood shop, then went shopping with my daughter. I'm totally wiped-out-exhausted, but it's been a busy day. And my bladder feels good, which is the most important thing. I don't have horrible urgency when I need a hydro, but I do have severe pain, which is relieved by the hydro.

Donna

[BigFig]

I don't have horrible urgency when I need a hydro, but I do have severe pain, which is relieved by the hydro.

Donna[/QUOTE]

Donna, so glad you are doing better and your hydro helped. Can you be more specific on the severe pain?

Thanks, just doing some research before I see my uro tomorrow.

Carol

[ICNDonna]

Before I schedule a hydro, my bladder hurts all the time.

Donna

[jeanababy]

Amy,
I'm guessing that you're seeing Dr. Evans. I've been seeing him for several years and he has done two hydros for me. I get total remission for about 7 months with each one. I try to wait 9 or 10 months between hydros. My last one was last June and I'm starting to have pain again and need another one soon. He will not do them closer together than 6 months. He told me that as long as I get relief from them he would do them until they don't work anymore (I don't want to think about that). He does them under general anesthesia in the OR facility in the first floor of his building.
Jean