PSA and update to an old thread

[abcdefu]

One of my first posts here was in 2013 (see below)

UPDATE and PSA: In 2013 I was hospitalized with some urological issues due to the SB leaving me with an overactive neurogenic bladder. My EX urologist suggested I receive botox injections into my bladder. I agreed since it was supposed to be a simple procedure and he told me there were no side-effects. On November 15, 2013 I had the procedure. I woke up paralyzed. Apparently the botox spread when the doctor put the botox needle through my ureter, which caused the botox poisoning.

I spent 18 days in the hospital and 18 days in an inpatient rehab facility. Then all of a sudden, after being in a position people with spinal cord injuries should avoid, I found out that my spinal cord was tethered, hence the surgery to correct it in January. The botox wore off in 6 months and I re-learned how to walk, but now I have a lot of limitations, especially after having my spinal cord surgery to correct it.

I was unable to post the whole story here due to attorneys reviewing my medical records. The last two years have been absolute hell. I have been dwelling on all this bullshit for two years.

I spoke with almost 15 attorneys, but due to the complexity of my issues with SB, as well as the cost it would take to have 5-6 doctors testify, the attorneys didn't want to take the case.

I am posting this because I don't want to see anyone go through what I went through. There are commercials about bladder botox on television now, which weren't on tv two years ago. They set forth the risks including the botox spreading from the injection site.

I am also posting this because the last day to file suit is tomorrow. The last couple days have really given me closure on this whole situation. I was so angry that this completely changed my life. I am now at peace with not moving forward. Reliving this over and over would be detrimental to my mental health. I feel like I finally have closure and I will let karma take care of the physician, who clearly falsified my medical records to cover his ass.

PSA: Botox is super dangerous and can have horrible side effects.

Post by abcdefu on Dec 11, 2013 at 9:32pm:

I have spina bifida. I can walk, have run 5ks and waitressed for 10 plus years. Anyway, I went in for an outpatient surgery on my bladder that was only supposed to take an hour tops. Well when I came out of anesthesia, I couldn't walk without assistance. It has been a month now and I cannot walk without a walker. I have horrible back pain that shoots up and down my back, legs, feet, and hands.

I ended up spending 12 days in the hospital. For the record the doctor never came back to see me. I have not seen him since the procedure. I feel like something went very wrong, but i have been to two doctors so far and they can say the procedure for sure caused me to not be able to walk. All we know is I walked into the hospital before the procedure, but could not walk back out without a walker.

I have been out of work and have finally got a dr to fill out my disability papers. I am so upset and frustrated. I am becoming severely depressed and sad. I am in so much pain and no one can help me. Sorry to post this here, I just need to talk to someone. So if you were in my situation would you look into a lawsuit?

Also, can I hang out here? I am home all day with nothing to do!

Read more: pandce.proboards.com/thread/264848/sue-dd#ixzz3rSzxHIZE

[sassycat]

Wow, you have been through a lot so very sorry. I know somewhat the struggles you are facing, as my son has SB and a tethered cord and bladder issues as well. I hope it all works out and hope you sue the asses off the docs who did this to you.

~internet stranger hugs to you~

[abcdefu]

Nov 14, 2015 9:34:52 GMT -5 sassycat said:

Wow, you have been through a lot so very sorry. I know somewhat the struggles you are facing, as my son has SB and a tethered cord and bladder issues as well. I hope it all works out and hope you sue the asses off the docs who did this to you.

~internet stranger hugs to you~

Thank you and I'm sorry about your son's diagnosis. 

Unfortunately there is nothing I can do when it comes to filing a lawsuit. I had a lot of attorneys and experts review everything, but my state has a very difficult standard of proof for med mal cases. The doctor is a urologist and my tethered cord it neurological. No one would sign an affidavit or testify that an urologist should have known I would have suffered from neurological issues by leaving me in the high lithotomy position. 

All incan do know is warn people of the dangers of this procedure by sharing my story and I'm okay with that. I am now re-directing my anger to once again defying physicians' expectations, which I have been doing since I was born! 

Right now I am focused on rebounding from my injuries from my recent car accident and moving on. 

Im not sure how old your son is, but if you need any support, questions, or just venting, feel free to PM me! 

[sassycat]

Oh I am good, he is 25, had surgery at 2 days old and didn't find out about tethered cord until his 20's.

We only found out when I went to hospital with him as he was getting many urinary infections. I fought with dr's and wouldn't leave until they did further testing, and that is when they found out about neurgenic bladder. He had the surgery and they thought it may work, but now he has to catheterize 3 times a day for the rest of his life. It is not that big of a deal, as he leads a fairly normal life.

I wish you all the luck in the world SB is a big ole clusterf*ck .

[Deleted]

You are a strong and wonderful peson abcdefu! I'm so sorry you've had to go through so much, but I find you such an inspiration.

[abcdefu]

Nov 14, 2015 11:37:57 GMT -5 @pdx18 said:

You are a strong and wonderful peson abcdefu! I'm so sorry you've had to go through so much, but I find you such an inspiration.

Thanks PDX! That means a lot to me!


I decided to let everything go on Wednesday. I saw my neurologist on Thursday and she commented that I looked the best she has ever seen me. When I told her about letting go of the med mal claim, she said that was most likely the reason because I just looked "lighter"! This has been weighing me down for two years and allowing myself to let it go, was very noticable! She also said when she saw I was in an accident she thought I was going to be a mess. She stated she was really proud of me for figuring out a pain management regimen that works for me. 

[1confused1]

From what I can tell, you are an amazing person with a great attitude.

[abcdefu]

Nov 14, 2015 11:20:21 GMT -5 sassycat said:

Oh I am good, he is 25, had surgery at 2 days old and didn't find out about tethered cord until his 20's.

We only found out when I went to hospital with him as he was getting many urinary infections. I fought with dr's and wouldn't leave until they did further testing, and that is when they found out about neurgenic bladder. He had the surgery and they thought it may work, but now he has to catheterize 3 times a day for the rest of his life. It is not that big of a deal, as he leads a fairly normal life.

I wish you all the luck in the world SB is a big ole clusterf*ck .

I am in the same boat with the cathing. I've been doing it since I was 4 yo, I'm now 29. I am glad he lives a normal life. For me I found that "appearing normal" is sometimes more difficult bc it's harder for other people to understand limitations. Not all disabilities are visible, but people are ignorant to that fact! 

[abcdefu]

Nov 14, 2015 12:17:41 GMT -5 1confused1 said:

From what I can tell, you are an amazing person with a great attitude.

Thank you very much for your kind words! 

[calle28]

Oh abcdefu! You've been through so much and you really do seem to be at peace with the whole situation.

You're awesome and inspiring!

[coda]

What an ordeal but you are handling it with grace and class. I'm glad you are doing better and I'm sorry that you had to experience that for 2 years.

Growing up my neighbour had SB but she was completely paralyzed from the waist down. Until recently I honestly never knew that there were different levels of severity I guess you could say with SB.

[Deleted]

Wow! I am so sorry!

My mom almost got Botox in her bladder for another issue but went with a different procedure instead. I am going to tell her about this.

[caramia]

Thank you so much for posting about this. For 6 months, we're cathing my daughter, then she'll have more testing to see if we need to continue...so she may have bladder issues as well. One day, she could be in this situation. So, thank you for sharing your story so that I'm more aware. It sounds brutal, but you have such a positive attitude- I really think that helps with overcoming medical problems. You're inspiring & I hope I can foster a similar outlook in Adalyn.

[abcdefu]

coda: Yes! There are three different kinds of spina bifida, but there are also different levels of lesions. My SB was a result of a tumor wrapped around my spinal cord. There was a hole where the tumor was removed. My lesion is at my S1 level. The different spinal levels determine the severity of the paralysis. No two cases of SB are the same, which is why doctors have a difficult time treating it.

ladybug: I am so glad you mom decided against it. I hope she is doing well with the procedure she chose. Botox is so dangerous. I wish I would have thought things through more, but as a young woman with an embarrassing bladder issue, my brain wasn't exactly thinking clearly.

caramia: This is the exact reason why I posted this. I don't want anyone to have to watch their child go through what my mom had to see. If A is diagnosed with neurogenic bladder, let me know. She may have to get her ureters crossed. I had this done in 1990 when I was 4 years old. The crossing of the ureters keeps any UTIs in the bladder and slows down the infection from spreading to the kidneys. Also I starting SC'ing after this procedure. SCing allowed me to go to "regular" school, bc I was considered potty trained.

As I got older, I saw SCing as a positive. Imagine never having to sit down on a public toilet seat! lol! I hope A is doing well! Feel free to contact me with any questions.

[Deleted]

She had an overactive bladder as well and decided to go with the InterStim. It's like a pacemaker for your bladder (sort of) but it's inserted surgically and sends electric pulses to some nerves in the tailbone which then controls the bladder. I am explaining it horribly because I am tired, sorry! But she is pretty happy with the device- it's made a huge difference in her overactive bladder issues!

[jigsy]

I am glad you were able to find peace with what happened and are finding the strength to move on. I worked at a personal injury law firm, and we almost never took med-mal cases, even if they looked good, because it was so cost prohibitive. It is disappointing when people who deserve to be heard don't get the opportunity.

You have a really great spirit and I'm continually impressed by your positive attitude. Keep up the good work!

[abcdefu]

Nov 14, 2015 23:57:02 GMT -5 jigsy said:

I am glad you were able to find peace with what happened and are finding the strength to move on. I worked at a personal injury law firm, and we almost never took med-mal cases, even if they looked good, because it was so cost prohibitive. It is disappointing when people who deserve to be heard don't get the opportunity.

You have a really great spirit and I'm continually impressed by your positive attitude. Keep up the good work!

Yes! That is what I heard as well. I think something like 90% of potential med-mal claims are turned out. Also, when the medical issues are so complicated, it's difficult for a jury to understand.

Thank you for your kind words. It helps me so much to continue to keep a positive attitude when it's being recognized. As sassycat stated, the SB world is a clusterfuck, I am hoping to use my experience to bring more awareness, so that it can be changed.

ladybug - I was looking into that procedure before I went with the botox. The issue is that I don't have any nerves to stimulate due to the severe nerve damage. I am so glad that it is working for your mom! That is great! If she would have went with the botox, she would have had to go for injections every 6-9 months. The stimulator was the better option!

[glitzyglow]

You are so strong @abcedu! I'm glad you found peace with the situation, but I do hate that you have had to experience so many difficulties. Big hugs to you.

[bg]

Everything that glitzyglow said. I continue to love your positive attitude!

[sassycat]

Nov 14, 2015 13:25:44 GMT -5 abcdefu said:

Nov 14, 2015 11:20:21 GMT -5 sassycat said:

I wish you all the luck in the world SB is a big ole clusterf*ck .

I am in the same boat with the cathing. I've been doing it since I was 4 yo, I'm now 29. I am glad he lives a normal life. For me I found that "appearing normal" is sometimes more difficult bc it's harder for other people to understand limitations. Not all disabilities are visible, but people are ignorant to that fact! 

It does suck,  and yes the invisible ones are worse for sure,  you just really learn to deal with them, and the ignorant people will be that way forever.  You really are an inspiration too,  dropping the lawsuit is probably for the best, as I really contemplated suing our docs for not finding this sooner but really all the money in the world is not going to change what is still life.    Good luck keep that strong attitude and move ahead with your head held high.

[abcdefu]

Nov 15, 2015 16:15:36 GMT -5 sassycat said:

Nov 14, 2015 13:25:44 GMT -5 abcdefu said:

I am in the same boat with the cathing. I've been doing it since I was 4 yo, I'm now 29. I am glad he lives a normal life. For me I found that "appearing normal" is sometimes more difficult bc it's harder for other people to understand limitations. Not all disabilities are visible, but people are ignorant to that fact! 

It does suck,  and yes the invisible ones are worse for sure,  you just really learn to deal with them, and the ignorant people will be that way forever.  You really are an inspiration too,  dropping the lawsuit is probably for the best, as I really contemplated suing our docs for not finding this sooner but really all the money in the world is not going to change what is still life.    Good luck keep that strong attitude and move ahead with your head held high.

I just don't think I could re-live it over and over. I was having PTSD and nightmares. I just needed to let it go and let myself move on. Like my neurologist said to me the other day, I can still have a good quality of life. Sure I can't run 5Ks or take zumba classes, but once my hand heals, I can wheel 5Ks. I can take Zumba Gold classes. I will (try) to do everything I did before, even if I have to do it a little differently.

[Deleted]

Wow, I had no idea about the botox issue with neurogenic bladder.  I'm sorry that the dr isn't getting hammered with a lawsuit, but these things are difficult.  
I'm inspired by your positive attitude and perseverance through it all.  You are strong and I'm glad you are mentally at peace with things.  There has to be sunshine after all of this rain. You're an inspiration.  

[abcdefu]

Nov 15, 2015 22:54:20 GMT -5 @blueyes623 said:

Wow, I had no idea about the botox issue with neurogenic bladder.  I'm sorry that the dr isn't getting hammered with a lawsuit, but these things are difficult.  
I'm inspired by your positive attitude and perseverance through it all.  You are strong and I'm glad you are mentally at peace with things.  There has to be sunshine after all of this rain. You're an inspiration.  

Thank you so much! Everyone has been so supportive here throughout my hellish journey. I give a lot of credit to all of you ladies who have helped me over the past couple years. As many of you know, I don't have a lot of support IRL, so everyone's kind words, prayers, thoughts, advice, etc. has helped keep me sane!

[mcc]

Hey lady, I haven't been around but came in today just to lurk and found this post. I remember when you were going through everything and I'm so sorry that this happened to you. It sucks that the lawyers were unable to do more for you, however your positive attitude and willingness to set limits for yourself is wonderful. You're an inspiration to anyone who is going through something uncontrollable in life. I wish you nothing but good health and happiness moving forward...and for that doctor to become incontinent

[abcdefu]

mcc: Thank you so much! I've been wondering if you were still around. I hope everything is going well with you!

Your last comment made me laugh! If that happened and he had to wear Depends, I think that is all the justice I need! LOL!

P.S. I only saw your post because I was feeling a little down tonight. When that happens it makes me feel better to go back and read my old threads with everyone's kind words. I was so happy to see you posted!

[winecat]

You are amazing!