Can someone give me there expert opinion on my case please

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Can someone give me there expert opinion on my case please

Postby Frank » Tue Jan 10, 2017 6:06 am

Hi everyone. I am new here. I will try to be as brief as possible. Looking for someone's opinion who is familiar with this stuff. I had a hard fall from running on the concrete a year ago and have been suffering ever since. The only thing I know that I have for sure is a hip Labral tear and cam impengement. I am having surgery to fix this in 9 days. I am praying that this will fix ,my problems but I am skeptical of the part that bothers me the most. I have had a MRI of pelvis and it was carefully checked for nerves and hamstring/ adductors problem and he said it didn't show anything. My biggest problem that is shutting me down is this pain that runs from the bottom of the low back sacrum and up underneath by the testicles and then branches out and goes down the inner thigh. It is a burning ,stinging pain. Now it is more numbing though. It feels like someone ripped me up through there. The worst part is in the inner butt area in the crease. It hurts to sit and can't do hardly any excercise anymore because it makes it worse. Hurts in The ishial tuberosity area too. Before this I was in excellent shape and could do sports and everything. I fell hard on my pelvis and everything got pushed to the left. I have corrected as much of the problems as possible with tons of other and alternative therapies but now I am stuck and fearing for my life. I am severely depressed and have lost everything because of this . I will work really hard to do whatever I need to do to get bettter but I don't know what that is. Next step is too fix these structural problems but I don't feel like they are giving me that much trouble. I don't know. Not looking forward to the surgery though. I feel like I have to get it over though. From doing research I suspect it may be something with the posterior femoral cutaneous nerve and maybe pudendal. I don't have any issue with urinating or Bowell movements just what I described. I just have to get rid of this it is killing me mentally and physically. What do you think? Can anyone. Help?
THanks
Frank
 
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Tue Jan 10, 2017 6:32 am

Hi Frank,

It sounds like you are on the right track starting with getting the hip fixed -- based on what some of the other patients on this forum have said. You can read Lernica's posts on that topic. From what they have said there seems to be less risk of getting worse from that type of surgery than from PNE release surgery.

As far as the inner thigh pain and pain near the ischial tuberosity -- I had those same things. The inner thigh pain was due to the obturator internus muscles being in spasm from the pudendal nerve entrapment and the pain near the ischial tuberosities was due to the pudendal nerve being entrapped. My inner thigh pain was primarily burning. Dr. Bautrant said my worse problem was the perineal branch of the pudendal nerve. Both of those pains are gone since having pudendal nerve release surgery as long as I avoid certain activities. But I can't say for sure what is causing your pain since pain can radiate and it can be difficult to determine the primary pain generator. Sometimes you just have to keep trying different therapies until you find what works and sometimes it's a matter of allowing time for things to heal. You might want to read Ezer's posts on this forum since his pain was triggered by a fall. He was helped by the mindbody approach after trying surgery that he feels did not work.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Can someone give me there expert opinion on my case plea

Postby Frank » Sat Mar 18, 2017 6:27 am

Hi violet,
Thanks for your opinion and info. I just wanted to post an update. I am 2 months out of surgery now. Everything still sucks. My hip is slowly improving and I am working on getting. My rom back. This will take a long time though. I will be doing pt for this for a long time. This part is manageable but the pn issue really sucks. Things got a lot worse after surgery as far as the nerve but have now calmed down back to what they were pre surgery. Still can't sit. It feels like something got injured kind of right where the leg meets the body and or at the ishial tuberosity right by the paraniuem. It's like a nerve has been injured maybe around the sit bone or below it there and every time you try to sit or rotate or move your legs you get this kind of friction torn feeling that really can be hell. I also have a diminished sex drive. Penis doesn't feel the same. It's not completely numb but the sensation has been greatly reduced especially in the tip. Just feels like your hand or a piece of rubber or something. This is extremely concerning me. I am going to be working on my pt and getting a nerve block in the near future. I sure hope this starts to come around. It has been ruining me for what seems like forever now.
Frank
 
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Re: Can someone give me there expert opinion on my case plea

Postby Andy_Pablo » Sun Mar 19, 2017 2:52 am

Frank wrote:Hello, Andy,
I am 35. I had to go back to my doctor for a 2 month follow up since my hip surgery. That's why I didn't reply yet. It's a six hour drive and it flared my symptoms up big time. This really sucks now. It is killing me now as I try to write this. I am sloped back trying to avoid the sitting position as much as possible. I had a hard fall on my hip and that is how this nightmare started for me. I had surgery and got my hip fixed and my doctor is hoping that it will fix my nerves symptoms as well but so far it has not and of course these are the worst symptoms out of all. It drives me crazy too. I have some of the symptoms you have talked about in your post too. I will be getting a block next within the month. Does the nerve block Hurt? I have been hurting for a long time, completely lost my life, independent life, girlfriend, everything for the time being. I am extremely depressed and suicidal. Every day I ask myself how will I make it just 1 more day? What if this is how it is now forever? I want my old life back damnit!! So you think that you are improving still? What surgery did you have and how bad was it? It sucks to be this age or any age and have these symptoms. I tell myself if I would have gotten this when I was 70 or so it would still be horrible but I could accept it I guess because I would have gotten to live my life at least but not in my 30's hell no!

Hi again Frank. I have copied your response from my thread into your welcome thread so hopefully other forum members might be able to offer some help. I understand your frustration. Being active & independent & losing that is difficult to take. The waiting around might almost be as bad as the actual injury itself. In answer to your question about whether the nerve blocks were painful, yes, mine were. I think my doctor may have hit a nerve as a horrific pain shot down my leg. The other ones were not that bad. I did have a negative reaction to one too. I read it was a "cortisone flair" & that gave the most amount of pain I have had. Ever. But this is apparently rare. I read that only 2% of patients have that kind if reaction & I was one of the "lucky" 2%. I had Bi-lateral pudendal nerve decompression surgert. wont lie to you, surgery was horrific. Increased the pain dramatically, made me less mobile but more depressed.Things have calmed down since surgery, but its not enough, yet. I hope for further improvent as time passed. Surgery is a huge step. It isnt overt successful & has the potential to make things worse. I hope you start to get improvements from your recent hip surgery as things settle. Good luck & keep us informed how you are doing. If you have any other questions, dont hesitate to ask. Cheers, Andy.
Credula vitam spes fovet et melius cras fore semper dicit...
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Mon Mar 20, 2017 5:39 am

Frank, regarding that pain you describe near the sit bone where your leg meets your body, is that on both sides or just one? A good PT should be able to do a rectal exam and tell you if that pain is along the course of the pudendal nerve or somewhere else.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Can someone give me there expert opinion on my case plea

Postby Frank » Mon Mar 20, 2017 7:31 am

Hi Violet,
All my pain is just on the right side. All of these symptoms started immediately after I fell . I haven't seen a good pelvic floor pt yet. That is next on my list. I have a good hip ortho pt but he doesn't get into all of the pelvic floor stuff however he is still addressing the nerve some through specific exercises and these glides while on all fours. He is very interested and wants to help. I would have to travel far away to find a good pelvic floor pt but I will do whatever it takes. There are so many nerves in there that I go crazy wondering which ones it is. But even if I knew then what could I do about it right? I suspect it could be some pudendal, inferior rectal, dorsal, inferior cluneal off of pfcn. The penis symptoms of loss of sensation and life makes me think that pudendal is playing a role with others maybe. There is a really annoying friction and rawness feeling that gets rubbed when I walk right at the right testicle and scrotum where the crease comes up through the pelvis. Waiting and waiting forever and not knowing if it will ever get better is a terrible feeling that I know you know all about. I can't stand how everything bothers it. It dictates what you can and can't eat and drink. movement, sitting, speech, thoughts, mind etc. Any other idea on what I should do? For now I will just be working hard on the pt course that I am on. I wonder if there is any point in the block or not?
Frank
 
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Tue Mar 21, 2017 5:22 am

Frank,

Whether or not to go for a block is such an individual decision. My symptoms were bad enough that I was highly motivated to try it but if your symptoms aren't too overwhelming and you feel like PT is benefiting you then maybe it would make sense to continue what you are doing and not stir things up anymore. I know, the waiting can be agony, not knowing what the future holds as far as healing. It's really a matter of living one day at at time and getting the most out of that day that you can. I remember when I was living in a prison of pain but I kept searching for the right treatments until I found what helped. You have lots of options you can try so there is hope for you Frank. You will get through the worst of this and eventually find what works for you.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Can someone give me there expert opinion on my case plea

Postby Frank » Mon Apr 24, 2017 6:56 am

Hello, Violet,
Well my life is still the same. Working on pt and laying around. Still on crutches. Feels like a 100 years and that I will never be off them. My hip is improving some slowly. I really do think that I will be off them this time in 3 weeks. At least down to a cane or hopefully off all together. I. Have no idea how my hip will end up after all of the shit that I had done to it but it better be good. The doctor seems to think so. It was the cartilage damage and microfracture that I am worried about. Unfortunately my pn symptoms are staying the same. It varies som day to day but overall there is a lot of pain. I have currently been breaking down about 2 days a week. That is good though from before where I had many bad days. By breaking down I mean pain symptoms and missing the old life desperately and shaking and crying and full of fear. It is a horrible way to exist. Regular days aren't much better but I try to stay focused on pt exercises and stretching etc and not break down. Feel terrible lonely and this isolation kills me every day! Will it ever end? Violet do you think that the symptoms with my penis will ever get restored back to normal? Or are all of these treatments just about pain management? Is it possible it could just go back on its own after all this time or will I be stuck with my penis like this forever? I know you don't have the answers but you do have a knowledgeable opinion on this. Also I am going to go see a pudendal doctor after I get off crutches. Do you know of a good one on the east coast anywhere? I know the names do some and have researched some of them but I thought you may have more info on them than I know. Dellon is the closest. What about Cleveland clinic? They list they have a pelvic floor dept but there aren't any doctors listed on this site for them. Do you know anything about that ainswoeth institute in NJ? Any info would be great. Thanks Frank
Frank
 
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Re: Can someone give me there expert opinion on my case plea

Postby Violet M » Tue Apr 25, 2017 5:49 am

Frank,

Progress, even if it is slow, is encouraging. That's one thing that is so difficult about this illness is that healing takes place very slowly. As far as sensation returning -- you are right, I can't say for sure but I think it is possible to get at least some sensation back, just based on my own experience and from what I've heard from other people. Time and patience are the key words though. If you can do the alternating hot and cold sitz baths, I really feel those are healing to the nerve because they bring fresh blood to the area and take away toxins. I described them at the following link: viewtopic.php?f=25&t=5267

Regarding the East Coast doctors -- there are some other forum members from back East who can probably give you more and better info on those doctors than I can. NYT and Stephanies are from back East so hopefully they can make a suggestion there. If you can get more than one doctor's opinion, that would be ideal, but I know it's difficult to travel when you aren't feeling well.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Can someone give me there expert opinion on my case plea

Postby Frank » Wed Apr 26, 2017 6:43 am

Violet,
That sounds good. I will definitely try the sit baths. How often did you do them like once a day? 3or 4 times a week or whenever? About 9 months ago in the earlier stages of this I did hot epson salt baths and they made me feel better afterwards but that was it. It was just short term relief like taking a shower Inevening to knock it down. I just got tired of doing them so I stopped. I wasn't doing the cold alternating though. I also have pain on both sides of the penis at the base where the pudendal artery comes into it. It's a achy pain that shouldn't be there and is made worse if I mess with it. I saw a urologist locally and she didn't really know shit about the pudendal and said that I was her first case like this. She prescribed me some kind of compounded neurotonin cream to rub on the areas. I will try it when I get it soon. I may try to move close to a good pelvic floor person short term. I don't know. Since it sounds like it is something you have to do ove and over for a while that is another option for me. Is that right? Like how long? There aren't any of them near me. Do you know anything about Tracy sher in Orlando? It sounds like the few ones that looked good were in fl and ny as far as the east coast goes. I just want to get better and go back home to ca. I have a great tomcat who is really missing me and I need to get back to him. That is where I live but I am stuck here crippled for now with this shit. Talk to you later. Thanks
Frank
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