Surgery after 8 years

[KRISG]

Hi Marc and Alipasha,

Marc just asked me to upload pictures here .
But I have 3 the same pictures ...this ones

Falciform process of the Sacrotuberous ligament.jpg (135.23 KiB) Viewed 1285 times

If you send me the other I will upload them here.
You could do it yourself also if you would like
First save any picture as JPG to your disk then on the bottom of the page where you make a new reply , click 'upload attachment- tab and select the file
Then if you want to place it into a certain area in your post click place inline under the file name you just uploaded .

Kris

[ezer]

Ezer, what form did the severe negative reaction from botox take? I developed severe fatigue after botox (said to be a 1:1000 event). I was housebound for two years and am still significantly restricted, although improving, at the three year mark. All the best with your recovery from surgery. Stephanie



Intermittent pudendal neuralgia, diagnosed as ischial bursitis, since 1985. Symptoms relentless following fall onto wet marble floor in 2003. Bi-lateral TG surgery in Nantes 2004 (PNMLT 5.7 and 8). No improvement.

Stephanie,
One more detail regarding Botox. A week after Botox I had blood work done in preparation for my annual physical. 2 days later, I got a call from my GP saying that my test results showed a severe immune problem and that he was very concerned. I do not remember what it was (ANA?) but I redid the blood test 3 months later and everything was normal.

[Karyn]

Wow! Very interesting! The ANA must've picked up on the botulism. Seems a little scary for those who get repeated injections.

[Stephanie P]

Thanks Ezer, your immune system response after the botox injection is interesting indeed. A doctor suggested that my long-lasting depletion/fatigue was probably the result of a disordered immune system, which makes sense if a neurotoxin is loose in one's system (i.e. leaves the site of injection) as appears to have been the case with me.

Re your apparent lack of progress on the pain front, don't lose heart; recovery is very much an up and down process. Just take things slowly and let the nerve be. I know that's not easy when one is champing at the bit to see improvement and advice and comparisons abound!

All the best, Stephanie

[ca_spin]

Hello Ezer,

I saw Dr. Filler last week. and I am considering my options. I'm curious as to your healing status.

[Charlie]

In referance to posts made earlier on in this thread I see Jim11 has almost acknowledged he made false and libelous claims against Dr Filler. In a post on the CPPS forum he states

Just an edit of my previous post. The response of the surgeon to the fellow bedridden I noted ("get a job") may be in error. May have got the dr's he saw mixed up. (Another doc he saw for Botox or nerve blocks may have told him this.... great)

may be in error Jim? There is no maybe about it. You did make an entirely false claim. The cache from the old site was even shown to you. Dr Filler did not tell a patient to ' get a job '.

In addition the Dr that was reported to have told a patient to ''get a job'' was performing botox injections not nerve blocks. I'm all for fairly scrutinizing Dr's but please do your research before attacking medical professionals.

[ezer]

Hello Ezer,

I saw Dr. Filler last week. and I am considering my options. I'm curious as to your healing status.

Almost as bruised as after having PT with Tim Sawyer. Just kidding! Could you tell us more about yourself first?

[ca_spin]

Sure, I am 42 and a former competitive cyclist. I have a job that requires a lot of sitting. 2.5 years ago, I started commuting to work 20 miles one way on my bike. It was then that I started to consistently notice tingling, numbness, and strange symptoms in my pelvis, down the back of my legs and into my feet and toes. These symptoms had been there before, but they always went away, or at least, I did not notice them. I have had a history of back problems, so I thought it might be related to by back, but an MRI showed that nothing should be causing these symptoms. I then went through the urology/prostatitis (sp?) drill. To no avail. I then googled my symptoms, and wa la, up came PNE. My HMO has been unable to help me, but they did authorize me to see Dr. Filler for one consult, which I have done. Hence, my reason for interest in your post. After reading a lot of post today, it seems that there is a lot of controversy out there as to PNE docs and imaging techniques. I was to referred to Dr. Filler by my PT, who has a colleague with PNE (this colleague found substantial relief from DR. Filler).

[ezer]

ca-spin,
Some of my problems seem to have resolved (sciatica, numb toes, muscular pain) and I am left with constant pudendal nerve pain. It is very different from before surgery. Before surgery, the pain would vary with position. It would be worse if I sat, slightly less if I stretched, get better temporarily with PT. Now it is constant regardless. It seems it is to be expected as the myelin sheath regenerating is painful.
What did Filler tell you? Are you planning to do the MRN? Could you convince your PT's colleague to come on the forum and tell us about his successful experience?

[ca_spin]

Ezer,

Thanks for the response. I will email my PT and ask her if she will make this request of her colleague. I doubt that he will come on the forum. He only spoke with me once when I was first considering the possibility that PN might be my issue. My PT put me in contact with him. He helped me to better diagnose it. After several months, I had lost his phone number and I asked my PT for it. She said that he recommended that I contact Dr. Filler, but that he was not willing to chat with me again. Kind of wierd ehh?

As for me, I have to make a consultation appointment with a neurosurgeon (the one ultimately responsible for making the call on outside referrals) within my HMO to go over Dr. Filler's treatment recommendations. I am hopeful that he will agree that the the MRN and the accompanying injections are necessary. If he does not, I am not sure what I will do? I will have to appeal the decision. The MRN and the injections are way to expensive for me to pay out of pocket.

BTW: Dr. Filler believes that I my issues include Piriformis/obtutrator internus/Superior Gluteal Nerve/Ischial Tunnel Syndrome. I am still waitng for the actually report, so I do not recall what all this means.