Looking for answers::

[Violet M]

There was a time I thought career, etc. were out but I am back to work. I'm not suggesting you will be able to resume extreme sports -- but with the right treatments you may be able to resume some things.

Violet

[constantpain]

Is it a common feeling that nerve damage that I"m going through is not something that will be 100% cured? I'm not jumping on that band wagon just yet. I have hope I will get better.

In short, anyone that has dealt with nerve damage does it get better or do I need to adjust?

[janetm2]

A couple of things:
The neurontin takes some adjusting and the best way is a very slow increase as you go with staying at on dose for a week or more if necessary until you adjust each time. I added 100mg I think every 3 days but held at 900 mg or 1200 for a few months before I started again and maxed at 1500mg even though it only helped a bit but my pain wanted me to stop at that level. My side affects were mostly dizziness and blurred vision but if I just waited each time an effect started at that level until it stopped then I was able to continue again.
As for the adjusting your life I am with Violet and the extreme stuff may be gone or not depending on your case but other things can certainly get better and return. I for one would not consider something that we know could easily reentrap the nerve if I can. I intend to use the cushions forever to sit rather than chance it. I could change my mind but I think the surgery and all was once enough. Although I am at my worst at the moment (pelvis is both rotated and misaligned due to attending my brother's funeral services including travel) I expect to bounce back with PT and time. So before this week I was up to working some 8 hour days aweek and other 5-6 or less hour days for the5 day work week, my pain was 1-3 generally and some flares, I can cook and was able to visit my brother this summer 1 hour flight and take a short vacation (1.5hour drive) to visit longwood gardens in my wheelchair that has a custom roho cushion(also have anothe at work as I have an 8 hour desk job and chronic foot pain along with PN. I had PNE TG surgery May 2011. Hang in there, always Hope.gotta run and finish ctaching up on the forum and finding the donation info for my coworkers friends to donate in memory of my brother before my first day (today) to work. Unfortunately I just thought of it and missed using Hope as THE charity not just your choice. Darn it.
janet

[helenlegs 11]

Hi constant,
Sorry you have had to join us, but WELCOME anyway.
I'm sure there will be answers for you too. It is early days of course (sorry, I realise that you have been in pain for a good while, more early days for treatments) and you have had some success with neurontin, although to get away without some initial side effects is unusual, so don't feel too disheartened.
Neurontin can be combined with antidepressants like cymbalta/duloxetin for added pain reduction, so it's always worth experimenting especially initially.
I would totally agree with all the great advice so far, a good PT evaluation could give you some better insight too. As mentioned the zaps are so nerve related but when it involves the groin area it is usually the psoas muscle and nerves mentioned by HM and Violet that are responsible there.
Not sure if any of this helps but a recent publication (Feb 2012) on chronic pelvic pain gives this run down on the anterior nerves in the pelvis.

6.2.1 The anterior groin nerves
The iliohypogastric nerve arises from L1 and its anterior branch supplies the skin above the pubis; its lateral
cutaneous branch is distributed to the anterolateral part of the buttock.
The ilioinguinal nerve is smaller than the iliohypogastric nerve; it also arises from L1 and is distributed to the
skin of the groin and mons pubis.
The genitofemoral nerve arises from L1 and L2. It passes through the psoas muscle, then down it to emerge
through the deep inguinal ring. Its genital branch supplies the cremaster muscle and a part of the anterior and
lateral scrotum. The femoral branch passes close to the external iliac artery, the deep circumflex iliac artery and
the femoral artery to be distributed to the upper part of the femoral triangle. The two branches of the femoral
branch may separate at any level, therefore, sensory phenomena associated with nerve damage depend upon
the level of the lesion and individual variability.
The lateral cutaneous nerve of the thigh arises from L2 and L3 and eventually leaves the abdomen behind
or through the inguinal ligament at a variable distance medial to the anterior superior iliac spine. In the thigh,
it divides into an anterior branch that supplies the anterolateral skin of the thigh, approximately 10 cm down
from the inguinal ligament to the knee. The posterior branch supplies the skin more laterally from the greater
trochanter, down to the mid-thigh.
The obturator nerve arises from L2-L4, descends through the psoas muscle, runs around the pelvis in close
proximity to the obturator internus muscle and obturator vessels, and leaves the pelvis via the obturator
foramen. This nerve has significant motor innervation, and its cutaneous branch is distributed primarily to the
skin on the medial aspect of the knee.

You can find the rest on the home page under publications. Guide to chronic pelvic pain (neuropathic is chapter 6)
I don't know a great deal about labral tears although there has been lengthy threads and discussion and advice on here about them. I remember reading something about imaging with contrast dye?? (some one correct me, if I have this all wrong) Was your scan done with a contrast?
When you talk about the feeling of your belt being too tight, I guess it depends on how low slung your pants are (these days) Heavens! how old do I sound!! But if they are 'hip' (hip level ) it would always be a good idea to get your piriformis muscle checked out in any PT eval too. Tightness in that muscle can effect the hip and then groin area, well it does with me.
Take care,
Helen

[Lernica]

When you say a hip surgeon ruled out hip pathology, was s/he a hip PRESERVATION surgeon who specializes in arthroscopic surgery? S/he is the only one qualified to diagnose labral tears and/or femoroacetabular impingement (FAI). Also, did you have a MRI with contrast (involving the injection of dye into the hip joint)? That is the "gold standard" for diagnosing labral tears.

Your former high level of physical activity, and the location of your pain (hip/groin), suggest to me that you might in fact have some hip pathology. Please do not rule this out until you see a hip preservation specialist who can do a proper evaluation of your hip(s). More info is available on this thread: http://www.pudendalhope.info/forum/view ... abral+tear. Please send me a PM if you have any questions.

[Griff522]

Constantpain, does your pain decrease when you lay down or rest? What method did these specialists use to diagnose your hernia?

I have just recently been diagnosed with two hernias after 3 years of living in constant pain.

I am looking for answers, help and advice. I have not been officially diagnosed with anything but here is my story and symptoms. I would very much like to hear if what I am dealing with is anything along the lines of what other have gone through and/or share the same symptoms.

I am 40, a male and healthy. I lead an active lifestyle beyond average. I live in the mountains, ski in the winter and bike in the summer and also ride motorcycles. I'm a photographer so my job can be demanding requiring me to be on the go for long hours and carry heavy gear.

Here are the details. Note, all pain is on the right side of my body.

About 6 months ago I got pretty sick. My glands both in my neck and groin seemed swollen to me. I was having mild, bulging empty feelings near my right inner hip/pelvis area. I wound up having 2 ultrasounds to rule out cancer(no cancer). The second test showed a very small hernia. I then met with 2 hernia specialist and a 'sports' hernia specialist. All three concluded that based on physical exam they would 100% NOT diagnose me with a hernia and none recommended surgery. In short, I was told that the pain I was having was not due to hernia based on explanation, symptoms and location. I was told to go about my life and stay active. But the pain continued and got worse.

Approximately 5 months ago I started to exercise heavily and mountain bike nearly every day and was feeling better than ever. One morning I woke up and needed to take the day off due to pain. The pain was more in the hip area on my side at that time. One day turned into two, into a week and eventually to where I am now at over 5 months of not being able to exercise or be active. I sought help from a hip surgeon to see if what I had was a labrum tear or something else going on in my hip. I had 2 MRI's and nothing was found.

Symptoms that I am dealing with:

Sharp shooting pain below my hip bone half way to my groin
Empty hollow feeling
(this one's for men) Sometimes a slight/faint feeling in my right testicle like I just got slightly racked.
Constant nagging/pulling feeling all day.
Pain is less in the morning but increases during the day and/or with more activity
Burning sensation in pelvis area
Pain increases sitting at a desk(sometimes immediately)
Pain if I drive a long distance
At times I have moved 'the wrong way' and have had such sharp pain I just need to stop what I'm doing. Sometimes I have had to go to my knees to just deal
Nearly immediate pain if I sit on a motorcycle (not a 'crotch rocket' all hunched forward but putting my body more in a L shape.
Pain radiates to my side towards my back and slight tingles down my leg, sometimes a few shots of pain down the leg.
If I sit in a chair and lean forward I get a bulging, pinching sometimes sharp pain
Sometimes I feel like my pants or belt are on too tight and my hip bones is very sensitive
There have been times of lightning bolt type of pain


In advance I appreciate any comments, feedback or advice. I have seen 5 different doctors and the last one I saw, the hip surgeon recommended I try an anti seizure drug. I want to learn more about what this might be before I start taking such meds though.

Best regards.

[donstore]

Haven't logged on here for a while but I just wanted to give you some advice. Forget about the motorcycle riding and use a cushion when sitting and be grateful if you can get away with that.I have found Lyrica to be extremely helpful. Neurontin gave me tachycardia and did not help my pain. You have to see what works for you.

[donstore]

I just wanted to add that you might want to consult with another hernia surgeon. It might be a good idea to pick the oldest most experienced person that you can find, preferably one that does nothing but hernia surgeries. This is a problem that is easy to fix but sometimes getting the right diagnosis can be difficult. Linda's case is one that makes this point.