Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I’m very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want – for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

@richman54660

@melissahebert This is post 3, with prior ones in this forum – sorry – but I can't edit prior posts – so there is more information, below. I am not a Doctor so this is not a diagnosis. However, spasms, and pain in an area are generally part of myofascial pain. Medical Doctors are notoriously ignorant about muscuar pain and it's consequences. Nerves aren't necessarily always "entrapped" but rather compressed, irritated. This may repeat some of what I said but, you'll may want to google "trigger point massage" and look for stretches for all areas of your hip (both front and back) and do them. That being said, overdoing trigger point massage can cause some pain and often the "tension" is internal – and you have evidence of that. That's where the stretching and exercise can help for the internal (as well as the LA wand).
Also, I found working the stairclimber at gym as well as weights, pilates, TRX (I talked about that in my prior posts). I also use an inversion table as I have some degenerative disc disease. Supplements helped too, maybe, I am taking 1 tsp of hemp seed oil extract orally, resveratrol supplement + quercetin supplement and 1 carnitine seemed to help me, too (see Amazon). For exercise, stretching physical therapists and knowledgeable massage therapists were the most helpful. I finally found a certified massage therapist in the Palm Desert, CA area called MRT (muscle repair therapy) that does intense ultrasound and stretching – that helped me immensely but I had a history of doing tough martial arts including Judo with breakfalls on the legs / hips so some of my issues were due to scar tissue he's remodeling (and it's working). If you can take heat you can lay on jade stone far infra red heating mats, too – that heat penetrates (however, if nerves are irritated and that is the source of your pain it could get worse ((supplements can help that)). Check and see. I personally went away from ice because it tends to cause trigger points. However, I bet you'll find stretching and exercise (and very deep inspirations) will help you the most. Try stretching the piriformis and all kinds of other muscles and make sure you don't have weak muscles. Muscle imbalances as we get older can happen and a weak muscle is a tight muscle (i.e. "piriformis syndrome" – stretch it and do "clamshells" with some resistance bands). Glute spasms can be caused by piriformis syndrome (other tight muscles would cause spasms near the anus; TRX workouts will help with weak back and glutes and weak core). It's all connected but you can get it all to relax. It isn't permanent even if you've had it a long time – but, that being said, chronic pain gets harder to get rid of the longer it goes on. Books to read: Headache in the Pelvis, Life after pain (Kuttner) and Pain Free (Egoscue) – but I prefer more intense exercises than his simple e-cises ("A muscle that does not move becomes a muscle that can not move" -Egoscue). Also, "Heal Pelvic Pain" (Stein) is good. When you get nerve compression and possibly whole regions of tension – like I had. You may have tension you're not really aware of – you just feel the pain/ spasms/ other nerve pain (burning/tingling) and even other parasthesias (altered sensations also including sweating and ciruculatory effects). Good luck. Work hard and you can get your life back! I really suspect you just have myofascial pain in a region and it can be conquered. The Headache in the Pelvis authors point that out – everything in the hips and back is so tightly innervated together that often people have multiple problems that are related (i.e. back pain / hip pain / spasms / IBS, etc.). Those nerves are all connected. Free the nerves! That's a lot of info – and my last post, I should think, but that is what helped me after two long years to get rid of most of my pain in the lower back, glutes, sciatica, and ease IBS symptoms.

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Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

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I have pudendal nerve spasms which are treated at my MI Pain Consultants I n Grand Rapids MI. My doctor gives me pudendal nerve blocks which give me some relief. I have terribly painful spasms in the front of both legs from the groin to the knees. Feels like my legs are being crushed. The spasms last for hours. it's either rare or no one talks about it.
Maybe you can talk to your doctor about the treatment I receive. God bless.

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@bkruppa

Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

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@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these – so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too – the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years – if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes – but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain – that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

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@richman54660

@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these – so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too – the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years – if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes – but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain – that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

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@mandee @bkruppa @sdswoboda53 @richman54660 I have no experience with Pundental nerve issues, but wanted to pass along some information that I found that might help about Myofascial Release therapy. There is a lot of information you can find at myofascialrelease.com and treating this condition is on the list. I do MFR with my physical therapist for thoracic outlet syndrome and with recovery from spine surgery and it has helped me a lot. It is a slow process and you have to work through layers, but it restores proper alignment and movement and corrects bad posture that contributes to so many problems. MFR often works where conventional therapies have failed by treating a physical problem.

https://myofascialrelease.com/about/problems-mfr-helps.aspx

https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf

Lumbo Sacral Decompression video with John Barnes

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Hello my name is brad, new member as of today. I had a motorcycle accident in 2003 and damaged my pudendal nerve. I haven’t been able to sit at all since. I either stand or lay down which is taking its role on my body after 15 years of doing it. People don’t realize how important it is to b able to sit. The pain is constant and very severe at times. I have tried a stimulator and morphine pump both to control the pain but unfortunately the cathider and leads of the stimulated stayed constantly inflamed cuz I have to lay on my back so much. I had the stimulator and pump from 2004-2006. I have been taking morphine sulphate for 15 years now, adding lyrica and nortriptiline along the way. I tried many other meds also, but these were the ones that helped the most and were easier on my body than some of the alternatives. I’m tired of living this housebound life and am currently looking into surgery which I have avoided for all these years cuz if things go wrong it could leave me with no bowl control. My pain management dr. Is in the process of looking for the best dr. For me to c to talk to about impingement surgery, I have no idea what is going to happen or were I’m gonna have to go but I’m willing to travel anywhere for one last go at this. I feel deeply for the people having to go through this, be strong and take it day by day . I hope we can help one another by providing information here, I will definitely update my circumstances as they develop . I’d like to hear from some more people that have had the decompression/ impingement surgery please share good or bad

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Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

Liked by qball2019

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@sdswoboda53

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

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My wife has similar types of pain. Some days it is not too bad while others it seems nothing helps. She uses CBD oil and it helps take the edge off of the pain. It is not as effective as her pain meds but again, with the amount of pain she has anything helps. CBD is NOT illegal. It is sold in many places here in South Carolina and in many states across the country. It is expensive but I suspect as more and more people get into the business pricing will come down.

She has had several nerve blocks tried in various areas of the pudendal nerve but none gave her one ounce of relief. Even the doctors were surprised at the results. We are just starting to use the stimulator so we will see how that turns out. Contrary to what you said I haven't had anyone including doctors say that you can do harm with a TENS stimulator.

We are starting to look into possible sources of pain originating from the spinal chord. Given where the pain is my wife tends to favor sitting on one side which may have caused a deforming of the spinal column and maybe putting pressure on the roots of the pudendal nerve. Right now anything is on the table. However, from all that I've researched it appears that the massaging techniques seem to help or cure this problem the most. Good luck and don't give up as hopefully you will find a cure some day. We are still looking for a cure after 8 years now.

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@sdswoboda53

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

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I would like to keep in touch. I have never had a support system. I’ve pretty much turned into a hermit and rarely leave the house except for necessary appointments. I’ve been married for 27 years and have have 5 kids. I feel bad for dragging them all through this, it’s been hard on us all. Take the cbd, anything is worth trying to better your quality of life. I will keep in touch

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@oregonbrad

I would like to keep in touch. I have never had a support system. I’ve pretty much turned into a hermit and rarely leave the house except for necessary appointments. I’ve been married for 27 years and have have 5 kids. I feel bad for dragging them all through this, it’s been hard on us all. Take the cbd, anything is worth trying to better your quality of life. I will keep in touch

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Wow! You certainly have a large family! That can also be a stressor. And I certainly don't mean that in a bad way…just lots of things you'd love to do with them. And how difficult it can be when you're in pain. I have that with my grandchildren. I want to be able to spend more time with them, but the pain can be prohibitive. You have to find that balance which can be hard. A supportive spouse can make a world of difference. I've been fortunate and blessed with a husband who tries to help out when he can.
I was diagnosed last May by two neurologists with a very rare autoimmune disease called CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. Nobody knows what causes it (same with Fibromyalgia). But my immune system has decided to attack me by eating away at the fatty coverings (myelin) on the nerves in my feet, legs, arm and hands so far. It causes the messages from the brain to become scrambled as it passes down the nerves to those body parts and back to the brain. It's messed up my balance and gait. I started tripping and falling last fall for no apparent reason. After EMG and electrical shocks, blood tests and several doctors, that's the diagnosis. Chronic, no cure, just trying to manage the symptoms with Gamma globulin infusions every 3 weeks. I'm just following the plan…
Will you be seeing any other doctors in the future that might afford you some other ideas for treatment/relief? I wonder if CBD oil might even be an option for you? Might be.worth checking in to. It's not easy living with pain 24/7. I admire your strength and tenacity. God bless you and your family… Sharon

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I understand your pain because I suffer from pudendal neuralgia as well. It's from Tarlov cysts that I have in my sacral area. I'm currently waiting for a surgery date for those and am hoping the neuralgia will subside with minimal nerve damage.

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@bkruppa

My wife has had pudendal nerve pain for 8 years. Initially the pain was due to a bout of shingles. However, during the recovery period I believe that something new kicked in which I believe is PNE (Pudendal Nerve Entrapment) as the symptoms are identical and to me it makes sense. The pain areas in the pelvic region are exactly where the pudendal nerve goes. PNE normally is resolved by relief of any muscle or scar tissue that may be entrapping the pudendal nerve. There are many facilities around the country that treat this condition and the treatment is massaging, dialators, etc. of the muscles that could be entrapping the pudendal nerve. My wife gets some relief from this kind of treatment but it is temporary and it only helps some. We have been to many facilities including the Mayo Clinic but the doctors don't seem to recognize PNE as mostly they want to use pain meds as a course of action. We want a solution. We have tried nerve blocks in the caudal area as well as lower in the buttocks with zero pain relief.

There is a muscle group that entraps the pudendal nerve and that is the sacrotubernous ligament which can easily entrap the nerve. There are specific massaging techniques that can relieve this pressure.

Given that my wife's pain varies doctors have agreed that the nerve is not damaged. This is good news as apparently there is no treatment for a damaged nerve.

We have looked into neurostimulators. My main concern is affect on other nerves in the probe area as well as other more serious issues. I contacted two companies about their devices and neither company has any data on helping pudendal nerve issues so we would be on our own as far as what to expect. However, I had heard about paralysis as a possible side affect. Again I contacted both companies regarding the frequency of this issue but neither would respond to my requests. That was unfortunate. Then we find that a neighbor down the street from us was paralyzed due to this procedure. Now I don't want to scare people out of going through this procedure as this is a case of one out of ……………I don't know. A 100. A 1000, A 10,000. I just don't know. A doctor at Mayo told us that 20% of these need to be readjusted (surgery) within 5 years and over time they become less and less effective. Given all of the above we chose not to go through with the procedure.

Another neuro doctor is suggesting that the pain is due to inflammation of root of the pudendal nerve which resides at the spinal cord where it connects to the spinal column. Here they want to inject steroids to reduce the inflammation. Results may be nothing, good for two weeks, two months,????? They can't predict. IF this is the source then my choice would be to determine why it is inflamed at this area and resolve this issue rather than throwing meds at it.

We are also looking into inversion tables as a source of relief. The theory being that maybe her spine is shrinking due to aging and therefore entrapping the pudendal nerve. Also since she favors sitting on one side to relieve the sensitive side maybe the spine got reformed and therefore entrapping the nerve. So we will give it a try to see what happens. We have also tried acupuncture, all the suggested vitamins for neuropathy, etc., but with no success. I read a lot of articles where sugar can cause nerve pain issues to heighten so we will be doing a sugar free diet for a couple of weeks to see what happens. MRIs show nothing but a dual frequency laser treatment has helped some but for only a day or two. My wife is on gabapentin and CBD oil. CBD oil takes some of the edge off of the pain so she uses it frequently.

Scar tissue may be another cause of entrapment. Women who have an an episiotomy during child birth can develop scar tissue in this area which is close to where the pudendal nerve travels. Haven't found any doctors who buy into this theory but a lot of my wife's pain emanates from this area so I am suspect. A PT friend of mine says that when a rotator cuff is torn in the shoulder scar tissue can form around a nerve and cause pain. In these cases surgery has helped release the entrapment. However, the nerves in this area are not complex nerves like the pudendal nerve which I guess is one reason most doctors don't want to do anything invasive since they may end up causing damage to the nerve which would result in even more pain.

Sorry for the long post. However, I wanted to present everything that we have done. I would like to hear from the rest of you about what you tried and what were the results.

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@bkruppa I am not sure where you are located at, but I know of a physical therapy facility in Tustin Ca that has had great success of relieving PNE through physical therapy, and there is a neurosurgeon at barrow neurological institute in Phoenix AZ that is very well known in this field.

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@jordanabrams30

@bkruppa I am not sure where you are located at, but I know of a physical therapy facility in Tustin Ca that has had great success of relieving PNE through physical therapy, and there is a neurosurgeon at barrow neurological institute in Phoenix AZ that is very well known in this field.

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My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

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@bkruppa

My wife has been treated by a physical therapist who specialized in this kind of pain but with little or no success. I will look into the Neurological Institute in Phoenix. We live on the east coast.

What is confusing about her pain is that some days when she gets up from bed the pain is very low and at these times doesn't even have to take pain medication. Then as the day goes on the pain gets worse and then she has to get back on her normal pain med routine. Given this it appears there something obvious that we are missing relative to the source of pain.

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It could be a matter of positioning. Also as an FYI there is a doctor in GA that specializes in guided ablation therapy but does it via freeze instead of burn with good results

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@jordanabrams30

It could be a matter of positioning. Also as an FYI there is a doctor in GA that specializes in guided ablation therapy but does it via freeze instead of burn with good results

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I've read good and bad about ablation that was done surgically. However, the newer techniques using cryo seem to have good success rates. Problem is finding a doctor who believes in this as most doctors that I mention this to seem to refer to the cryo techniques that were used decades ago which had little success. However, in either case one is always concerned about techniques that could affect the normal function of the nerve or nerve endings as if something went wrong the pain would get worse. So we are very cautious in heading in these directions.

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@sdswoboda53

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

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Hi Sharon,

May I ask if your doctors have told you why they can't offer you surgery to release the impingement? Have they told you what is pinching the nerve??

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