Hello from Brisbane

Dr Thierry Vancaillie

Hello from Brisbane

Postby krm123 » Thu Aug 10, 2017 12:43 am

Hi all,

32 year old male from Brisbane suffering from nerve pain in my buttocks and legs. Been doing physio in Brisbane with Peter Dornan since early July.

Going to split this into 2 posts. 1st post has the timeline of events as follows;


Dec 2105 – Developed a strange dull aching pain in left buttock on sitting down. Had been going to Gym for 4-5 months before this but stopped the gym 2-3 weeks before symptoms started

Late Jan 2015 – Symptoms resolved.

Jan – May 2016 - Played lots of soccer between Jan- May 2016 but stopped after I hyperextended by left knee and injured it. Knee pain resolved after a few months.

Late July 2016 – Left Buttock pain symptoms returned. Same as before with pain worse on sitting. Tried icing the area and thought I had maybe damaged a disc in back.

August 2016 – Twitching muscles across whole body. Can occur anywhere and usually comes on in bursts. Some days worse than others. Twitching has not resolved since then.

September – November 16 - Physio for Sciatica like symptoms. (not at Pete Dornan's place) this was with another Physio.

November 16 - Strange symptoms on standing. Dizziness, nausea, intense headaches hearing loss, balance loss only when standing. Resolved after 9 days in bed. Though it was just a sinus issue.

December 2016 - MRI of Brain and Spine by neurosurgeon in Brisbane showed minor wear and tear in back. Minor bulging around L5/S1 but no herniation or obvious nerve root compression. Had 2 diagnostic Si joint injections. Unsure if they helped as I did not have a major flare up that day.

Feb 17 - strange symptoms on standing. Dizziness, nausea, intense headaches hearing loss, balance loss only when standing. CT carried out on brain and looked Normal and MRI by neurologist revealed spontaneous CSF leak from spine causing intracranial hypotension (low pressure around brain due to CSF cerebrospinal fluid leak out of spine.

March 17 – Blood patch in epidural space. Spinal leak Symptoms improved from March – July. Although pulsatile tinnitus and slight headaches remain. CSF leak may have partially healed but could be intermittent. Nerve pain in buttocks continued.

July 2017 – Neurosurgeon from December 16 MRI suggested I try SI joint physio with Peter Dornan in Brisbane. Started in July 17 and been doing ~ 5 weeks now. No improvement in pain in legs.

August 2017 - Ultrasound of left buttock and leg. Some slight tearing on hamstring connection to bone, but very minor.
Last edited by krm123 on Thu Aug 10, 2017 1:02 am, edited 2 times in total.
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Re: Hello from Brisbane

Postby krm123 » Thu Aug 10, 2017 12:59 am

So to add context to my timeline above, it seems I developed a Spinal fluid leak , which I have been getting treatment for in Sydney at both St Vincents and Macquarie uni hospital. Neurosurgeon there doesn't think my spinal fluid leak is related to my pain in buttocks and legs but the Neurologist through it could be.

The pain in my buttocks started out on the left, and during intense flare ups leads to shooting pain through the left leg, burning pain and dull ache down to foot through what I think is sciatic nerve. The pain seems worse when sitting, a little better when lying (but still present) and again better on standing. So much so that I have used a stand up desk often at work. Sitting seems to start up the pain cycle.

Recently the pain has gotten much worse, and it appears to have spread to the right leg. The MRI of back shows no obvious herniation or compression of nerve. Some slight bulging at l5/S1 nerve root exit, but specialists don't think enough to cause sciatic like pain. On extremely bad days it would get upto a 7 in pain, but recently it has peaked to a 9 and is the most pain every experienced.

Symptoms

-Sensitive area on left buttock, with a sensitive area around piriformis muscle if I push on it.
-Shooting, searing, aching going down left leg (and more recently right)
-When things flare up the saddle area under my buttocks gets sore and sensitive (perineum area)
-Nerve running down my leg gets extremely sensitive to touch or put pressure on. This pain runs down to calfs, and sometimes to foot. Feels like my leg or the nerve is swollen inside.
-No problem with going to the toilet and doing a #1 or #2. All seems fine there.
- No pain in penis or testicles
- Pain does eases when sitting on a toilet. Put this down to taking pressure off buttock area
- No MRI yet of pelvic area or buttocks yet.

December 2016 neurosurgeon suggested I try Physio with Pete Dornan for SI joints last Feb. Couldn't start in Feb due to my spinal fluid leak. Started in July. So far not much luck or change. Peter Dornan said that if we continue to see no improvement then Dr Thierry in Sydney may be able to shed some light on the issues. Could involve pudendal nerve or nerves around SI Joint and needs more investigation. Both Neurosurgeons (Brisbane and Sydney one) doesn't seems to know what the issue is and as they are more back specialised don't really have a plan for me.

My thoughts are that it doesn't seem to be pain from the Back but somewhere in buttocks being the source of pain by nerve irritation or compression. Unsure if my symptoms match pudendal nerve compression since I have no problems going to the toilet.

It's been a tough year and even tougher 6 months. With the Spinal fluid leak, I could not tolerate standing for ~2-3 months, with the nerve pain in buttocks, I could not tolerate much sitting or lying down. I have been stuck between a rock and hard place with both issues and I have had little relief from the excruciating pain at times.

I am hypermobile and have an appointment with genetics Dr to investigate EDS later this year. both issues could be related to that I believe.

My wife had our first baby in February 1 week after the leak symtoms started. I was very ill for 2 months after this and could not help look after our newborn. I am also the sole bread winner of the house and had 2 months off work due to CSF leak.

I was under immense pressure to get back to work and earn money but with the continuing pain and discomfort, I have been struggling and feel I am slipping further into pain induced depression. Have no pain management plan in place and feel I need to take something other than ibuprofen, paracetamol or Coedine. I'm not keen on taking potentially addictive pain drugs but feel I don't have much alternative choice right now.

I assume Dr Thierry can perhaps rule out Pudendal nerve or work out if another area is compressed around buttocks?
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Re: Hello from Brisbane

Postby Violet M » Thu Aug 10, 2017 6:11 am

Hi KRM. Is it Theirry Vancaillie you will be seeing? I think he works, or used to work with an orthopedist but he is very knowledgeable and hopefully will be able to give you a proper diagnosis. I don't know exactly where your pain is but it doesn't sound like it's exactly in the distribution area of the pudendal nerve. Hip pain or lower buttock pain can be associated with things like posterior femoral cutaneous neuralgia, femoral acetabular labral tears or impingements, piriformis syndrome, SI joint dysfunction, and many others -- so really getting a proper diagnosis is key so you can get the right treatment. What does Peter Dornan think is going on? Do you have pain along the course of the pudendal nerve at the ischial spine or Alcock's canal when your healthcare providers presses on it via the rectum? You mentioned the SI joint. You could try an SI joint injection as a diagnostic tool. The SI joint is easy to locate and relatively easy to inject. I have had injections there with and without imaging. I would recommend imaging such as fluoroscopy if you are going to try it. Since you are hypermobile -- if you can find someone to do prolotherapy injections into the SI ligaments/joint maybe that would help. I found them to be helpful in stabilizing the pelvis. I don't recommend getting a lot of them because scar tissue can form. I think I had 3 or 4.

Since you have leg pain too hopefully you can get an MRI to rule out any lumbosacral issues.

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: Hello from Brisbane

Postby krm123 » Fri Aug 11, 2017 6:25 am

Hi Violet,

The buttock/nerve pain reduces when i'm not directly sitting or lying down. Standing is probably my most comfortable position. There is a sensitive area on the buttock which is assume to be close to piriformis muscle.

My Pudendal nerve at the perenium can hut sometimes but mostly when the nerves flare up all over that area. Saddle pain appears to come secondary to the flare up as if all the nerves become inflamed. The pain runs down through my leg and into my calf. If i touch the back of leg and calf, it can be very sensitive where i assume the nerve is.

My right leg has at times been sore, but again seems to occur in flare ups, however recently it appears to be getting sore more often running down the length of the leg. I don't have a sensitive area on the right buttock like i do on the left and when all this started out, it was really only my left side that gave me any pain initially.

Peter isn't really sure what is causing the pain. All we know is that his Physio isn't really helping, and the MRIs show up no obvious sign in the lower back. Peter suggested i see Dr Thierry as he may be able to pinpoint the issue . He thinks i will need to rule out a number of potential issues before i get to the bottom of it.

I had SI joint injections previously, but i can't say with certainty that they did anything as i wasn't in a major flare up when i had them done. Legs did feel a bit calmer for maybe a day after.

The pain can get excruciating often. Avoiding sitting or lying down really makes living life challenging as almost everything involves doing this.

The fact i got a Spinal fluid leak has also complicated my diagnosis somewhat.
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Re: Hello from Brisbane

Postby Violet M » Sun Aug 20, 2017 5:17 am

Well, it sounds like you have involvement in some areas other than the pudendal nerve. Did you have an MRI of the lumbosacral plexus? My physician required that as well as the lumbosacral MRI which it looks like you already had.

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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