MRI results from Dr. Potter visit

[PaulSa]

Calluna and Cari - thank you both for your responses. I checked and I did have the box checked for responses so not sure why I am still not getting the notifications.

Cari - the day I had my MRIs done, they told me if I wanted a copy sent to my home I should sign a form at the front desk when I went out. So I did do that - but I'm not sure that I'll understand a lot of the report, judging from the reports that were posted on here. It was a shock to find out that if you want a copy of your MRI, you need to pay $50 for a CD. Guess I'm spoiled, as when I get an MRI done locally, they automatically give you a copy before you leave.

Bamboo

Wow, I guess they were nice to me and included it in the $3000 fee.

[bamboo]

Calluna - thanks for the information. I am not too computer literate as you probably have guessed. And that is why I can't scan the report onto the forum Cari.

I did get a paper copy of the report today in the mail. I don't know if the ordering dr. has received it yet as they have a CA address for him and that is not his location. I'm gradually losing faith in the whole setup at HSS. First of all, my dr. ordered the MRI done with contrast and they told me right up front that that wasn't happening.

I was also told that Dr. Potter wasn't there to meet with me but on the report it says released date time of 12:40 and I was done at 12:15 so I'm not sure if that was the dictation time or just when they sent the results to Dr. Potter. Not to mention that they have the wrong address for my dr. His address was on the script for the tests so I don't know where they got the CA address. DUH!!!

Anyway, I was very disappointed and sad to read the report as I was hoping to find something fixable and not to do with the pudendal nerve. I know I should be glad to find out whether or not the nerve is entrapped but the fact that I can't do anything about it is upsetting. I would not get the surgery as I only know of 2 or 3 people who have said they are cured. I don't want to go thru the surgery only to end up worse or not any better.

Some of the highlights of the tests was 'asymmetric scarring of the left inferior margin of Alcock's canal, focally entrapping the left pudendal nerve.' Also noted was extensive amount of muscle atrophy affecting the abductors, hip abductors and pelvic floor muscles. The atrophy is fairly substantial, which may be seen in the setting of a myopathy'. ???????????

It also said on the MRI of my hip that there 'was chronic labral tear and insertional hip abductor tendinosis without tear.' Again, ?????

I'm still so disappointed at not being able to meet with Dr. Potter, who could have explained the meaning of all these results and if they are causing my symptoms or not. After putting up with chronic pain and living a limited life for 8 years I don't tend to give drs. much slack, as they are a constant disappointment in more ways than one. I wish I didn't feel that way but I do.

If I can find someone to show me how to post the results I will do so.


Bamboo

[helenlegs 11]

Well it seems that you do have your answer from the scan bamboo, mistakes or not. I think your 'highlights' give an excellent indication the problem and the description does sound fairly conclusive. What is your next step do you think?
Maybe your muscle atrophy could be tackled with physio ? ?
You must be feeling fairly fed up about the results (((hugs))) chin up if possible, at least you have answers to the pain.
Take care
Helen

[bamboo]

Hi Helen - thank you for your reply. I have no idea as to what to do next. There are no physical therapists in my area who know anything about pudendal nerves so I would assume they wouldn't know how to treat muscle atrophy in that area since we are limited in doing core exercises, and that is possibly why the muscles are so atrophied.

As for the entrapment, I am not comfortable with having a surgery with such a low success rate. I saw Dr. Renney when my problems started and I remember that the nerve block he ordered that was closer to the Alcock's canal was the one that gave me some relief but not the first one which was done higher up.

I will wait until I hear from the dr. who ordered the tests done and see what he has to say and if he has any ideas as to treatment of any of the things listed. I've only seen him once last year so do not have a 'relationship' per se with him. But he was very personable on that first visit so hopefully he will come thru for me.

My experience with most drs. locally for other problems is that they will order a test but there is no followup afterward re. treatment, even if something is recommended. A copy goes to my family dr., gets filed, and that's it. So that is the reason for my skepticism re. drs. I wish I didn't feel that way - guess I need an attitude adjustment. But most of us on these forums have dealt with these issues too so you know how frustrating it can be.

I see where you have entrapment at the Alcock's canal also Helen. And that Botox helped you for a short time. Sounds like you have traveled a lot in search for answers also. Would you consider having the surgery done to release the entrapped nerve? It's a tough decision and we all have to reach it based on our own circumstances. Are you currently having any treatment of any kind or any options that you are considering?

I hope you will have a good day today and find some relief from your pain. Thanks again for your reply. Take care and thanks for the hugs too. Always can use them!!
.
Bamboo

[helenlegs 11]

Hi Bamboo, I have to say that I would go for surgery as I believe that it is my only chance of improvement, now that all off the conservative treatments have been exhausted or at least my finances for them have. I can't ask to drain the bank balance any further, saying as I contribute so little to it at the moment.
I haven't tried a neurostimulator or shockwave therapy however and must say that the latter does interest me, if I found the cash and someone to do it. Actually over here (England) this treatment is available but used for tendon injuries, I haven't seen any reference to nerve problems at all
Yes my botox shot did have some benefit and for a good while but that was into my piriformis muscle. I haven't had any targeted treatment for PN, although it was hoped that the botox could have an effect on the PN , unfortunately it didn't.

Oh I have some scary doctor tales to tell many ongoing, I am shaking my head as I type that because I still can not understand how this is so hard for some to understand. There will be a few who will be getting pictures of my bottom if I ever do get an op What a privilege that will be ! ! for them of course .
Do you think that could be an arrestable offence? just to add to my tally of dealings with authoritative figures, might as well go and chain myself to some railings now Kidding. . . it's freezing here !

[Celeste]

Bamboo, I'm so confused. You went to Houston for a PNE diagnosis (and it sounds like you got one), then you went to Dr. Potter to see if she could tell you it wasn't a PNE diagnosis? Because it sounds like she confirmed it to me.

I think it's really unfortunate that you have come to believe that the surgery doesn't do any good, because I know for a fact that it really does. I also wonder why we have SO many doctors now performing it if none of them ever gets any improved patients. I hope you will reconsider that you may be wrong about it, and take a chance at relieving or at least improving your pain. Maybe you do have something else going on as well, something that may need a different treatment. But it really sounds (to me, anyway) like you have gotten yourself confirmation on what is causing the problem here, more so than many.

Best of luck to you no matter what.

[bamboo]

Helen and Celeste - I'm sorry I haven't posted before this. I've just been very down, not getting dressed some days at all. Besides the pudendal problem, I have a lot of g.i. issues and back issues which now makes it more painful to lie down than to sit, plus a problem with the occipital nerves in my head which making any lying down to watch t.v. or sleep very difficult. I have gotten NO answers or relief from any of these problems and I wonder what is the use sometimes of living like this.

As to the surgery Celeste, I know of no one, other than you, who has had successful surgery for the pudendal entrapment. If you can name five people out of all the people on both of the forums I would be surprised. I don't mean that to challenge you as you have been good enough to stick around and try to help the rest of us. But with such low success rates, I am not willing to end up possibly worse than I am now. Do you know of anyone besides yourself who has gotten their life back and is if not pain-free, at a level where they can actually sit and get around like a normal person. I don't know of any.

SOrry to be a downer but from where I sit, I don't see any answers. And BTW, to make it worse, I still have not heard from the dr. who ordered the MRIs and it's been a month now. I have called his office twice and have not gotten a call back to date. I have NO faith in drs. and have no reason to as none of them has helped me with any of my problems. They all say it's too bad, and it must be hard, etc., etc., but where is the help?

I wish I hadn't gone for the MRIs. If I don't deserve a call back at least, and there are no options other than surgery, then I am no further ahead than I was before.

Bamboo.

I

[Celeste]

Actually I do know lots of people who have gotten cured and improved enough to go on with their normal lives. We've listed them from time to time in threads like this, and of course they only are people who have posted on the forums, and don't count the others who were never here in the first place who also got well.

But I do understand that people can tend to focus on the improvement rates never being exactly as high as they personally would need to see in order to take a chance on a surgery, and I think that so long as that is admitted (rather than saying that "nobody" ever gets well) it's better to state that as the truth.

I'm so sorry for all of your other conditions; I hope you will be able to get relief.

[Karyn]

Anyway, I was very disappointed and sad to read the report as I was hoping to find something fixable and not to do with the pudendal nerve. I know I should be glad to find out whether or not the nerve is entrapped but the fact that I can't do anything about it is upsetting.

Hi Bamboo: I don't understand why you can't do anything about it. Could you please explain?

I would not get the surgery as I only know of 2 or 3 people who have said they are cured. I don't want to go thru the surgery only to end up worse or not any better.

I think it's really unfortunate that you have come to believe that the surgery doesn't do any good, because I know for a fact that it really does. I also wonder why we have SO many doctors now performing it if none of them ever gets any improved patients. I hope you will reconsider that you may be wrong about it, and take a chance at relieving or at least improving your pain.

Actually I do know lots of people who have gotten cured and improved enough to go on with their normal lives. We've listed them from time to time in threads like this, and of course they only are people who have posted on the forums, and don't count the others who were never here in the first place who also got well.

As someone who has had significant relief from PN surgery, I'm glad I took the chance. There are no guarentees with ANY surgery. After exhausting all "conservative therapies", this was my ONLY chance. Like Celeste, I've been in direct contact with others who don't post on the board. That's their choice and I'm sorry it's not reaffirming enough for you.

Some of the highlights of the tests was 'asymmetric scarring of the left inferior margin of Alcock's canal, focally entrapping the left pudendal nerve.' Also noted was extensive amount of muscle atrophy affecting the abductors, hip abductors and pelvic floor muscles. The atrophy is fairly substantial, which may be seen in the setting of a myopathy'. ???????????It also said on the MRI of my hip that there 'was chronic labral tear and insertional hip abductor tendinosis without tear.' Again, ?????

You've got a lot of different issues going on here, Bamboo. In my opinion, this MRI has afforded you the opportunity with directions to go in. PN decompression will not address all of your other issues. But they CAN all be addressed.

SOrry to be a downer but from where I sit, I don't see any answers.

But .... you've got answers listed above .

And BTW, to make it worse, I still have not heard from the dr. who ordered the MRIs and it's been a month now. I have called his office twice and have not gotten a call back to date.

will wait until I hear from the dr. who ordered the tests done and see what he has to say and if he has any ideas as to treatment of any of the things listed. I've only seen him once last year so do not have a 'relationship' per se with him. But he was very personable on that first visit so hopefully he will come thru for me.

Maybe he will. But how many more months do you want to wait? Is there no one else you could schedule an appointment with?
I'm truly sorry you're struggling, Bamboo. I don't understand how you can say you regret getting the MRI and you feel you're back at square one. Were you previously aware of all the hip problems? Were you confident about the PNE? It seems to me that you DO have answers. The question is, how are you going to proceed?