Anyone been to the Mayo Clinic - MN?

[EllenB]

We're set to take my 15 year old son John to the Mayo Clinic in balmy Minnesota in a couple weeks. I haven't read much about Mayo on this site, & wondered if anyone had any experience there. John will see different specialists for two days, & wrap up w/Dr. Allan Bishop (who is the head of the BP Clinic) at the end.

Look forward to hearing if anyone has been there, & if you have any suggestions.

Thanks!

Ellen

[John K]

Hi

I tried Mayo. It was after I had been to Dr. Teil at LSU. Dr Teil did nerve transfer surgery on dec 99. I have also met Dr. Nath at a Bpi clininc in Florida. I was not very succesful at Mayo. But maybe I was looking for a miracle. It seems I may have exhausted all my options before I went to Mayo. The nuerologist I met with there was very friendly and very knowledgable of the workings of the Brachial Plexus. But he was also somewhat blind to the ways of treating a bpi ( or maybe to polite to tell me there was nothing more I could do?). I was somewhat dissatisfied with my visit there. I went to the clinic in Jax. FL which is closer to my home. I did go there though because There was a poster here that found success there. All I got was more Dr. bills.

I like dr. Teil at LSU he is very truthful in his anaylasis and will not recommend options that are too risky or have more downfalls than advantages. Dr Nath is open to alot more options but I am not sure if I am ready to go that far. I would hate to compromise any other body function for a 50/50 shot at some recovery. I hope you get results. Every Bpi is different you cant hurt yourself by gathering information and medical advice. Just remember Drs dont know everything and they are there to give you options its up to you to decide what is right for you.

John K ( pushrod243 )

[mccflash]

My husband is also going to Mayo to see Dr Bishop tentatively on 2/11/03. The only thing we know of him is that our Dr is a colleague of his and has nothing but the highest regards for his skills.

When are you scheduled to go? Perhaps we will see you there.

Cindy

[EllenB]

What a hoot! We'll just plan to have a little reunion there, because we're set for Feb 10-11. Not sure when we'll actually see Dr. Bishop but I guess we'll make the rounds all over the place during the two days. Purpose is to have my 15 yr old son John evaluated (injury Nov '02). How 'bout you - what happened to your husband?

I'm so glad to read a good referral on Bishop. I was pretty much going on the fact that he was head of the group - figured that must mean something!

Thanks,

Ellen

[mccflash]

Ellen - coincidence or what? Mark, 39, also suffered his injury in Nov/02 - on Thanksgiving. He was riding his ATV at his brother's ranch in Florida and apparently lost control and flew off it just before it hit the tree. I say apparently because he was riding alone and he doesn't remember much, His sister found him a short time later unconsious, face down in the sand. They airlifted him to Orlando Regional Hosptial and diagnosed the BPI right away, along with a couple fractured ribs and a broken finger. He didn't have any life threatening injuries, thank God, and they released him three days later with instructions that he see a neurosurgeon when he got home to GA.

We went straight to his GP when we got home and had the necessary referrals to seek treatment immediately. After the ortho surgeon ordered and reviewed the MRI it took him a couple weeks to find a neurologist in the Atlanta area that would take on this injury. He has had all the tests - MRI, EMG and Myelogram and although I have discovered these tests are far from perfect they do indicate that he has avulsed C5-8 and T1. Our current specialist didn't feel there was anything he can do surgically that would be of any benefit, that's when he suggested that we allow him to send all his medical records to a neurosurgeon at the Mayo clinic in MN. That is how we happened on Dr. Bishop. They are going to do some tests and if things are what Dr Bishop believes them to be, we will be staying for surgery.
Tomorrow he has his first appointment with the pain clinic - none to soon. The pain has slowly been beating him down. I am told they are going to give him a steroid block. I pray it helps.
email me and we can trade details of our travel and lodging plans and maybe we can hook up there. I would love to meet someone going through this same ordeal, as I am sure Mark would. Its a lonesome world right now.

mccflash@bellsouth.net

Cindy

[jennyb]

Cindy, I'm not sure if a steroid block would mean an epidural injection? If it does, please read the info on this website about this treatment (it's about a third of the way down) http://www.arachnoiditis.org.nz/content ... ments.html it's from a support website for SCI's with intractable pain and is a summary of risks/benefits of various treatments for this kind of pain. It might be worth talking to your specialist about whether any of these issues raised re steroid injections apply to your husband's case.

I hope all you guys can meet up, I can tell you from experience that meeting your first 'fellow injured' is an amazing and wonderful thing. Good luck to all of you :0)

[EllenB]

Hi Cindy - I've sent you a couple emails directly. Good luck w/the pain treatment today. John had something different called a stellate nerve block (about midway down the site mentioned above). Didn't work & he's now taking Neurontin, Amitriptyline & Topomax. Bit of a challenge since this stuff will make him drowsy; although it's hard to stay alert at school, the distraction of school has helped a lot re pain.

Let us know how everything goes.

Ellen

[mccflash]

JennyB - Thanks for the info on the steroid blocks. I was a little leary to begin with and this didn't lessen my fears. I couldn't even understand quite how it would help in Mark's case. Anyway thankfully it doesn't matter - he didn't get it. It was apparently our doctor who suggested it to the pain clinic and once they reviewed his records they didn't think it was appropriate.

Although I am not happy with the clinic in their one-handed approach to pain (ie meds only - no suggestions of alternative medicine) - I will say they hit it on the nail for him. It has been 2 months since his injury and he has been given an array of meds - Hydrocodone, Vicadin, Percocet and Demerol and nothing was working. By last Monday we had both reach our limit and any light at the end of the tunnel had faded away. His pain was unbearable and it had beaten him down so badly.

I am happy to say that we now have a completely fresh and optomistic outlook. He is now taking 20mg of Methadone 3x daily, along with the Neurontin, Amitripyline and Lexapro he was already taking. Methadone worked for him immediately and quite effectively. I have my husband back and we are both savoring the moments.

As an added bonus, (that I was personally thrilled about) I had asked his PT to try a TENS Unit on him on our next visit. Well she did this past Friday and it was a complete surprise to find it actually worked for him. In less than a minute, it didn't just lessen the pain - it took it away. We turned it off and in less than a minute the pain was back. We did this several times. I was estatic. I realize it isn't always going to hit its mark and be so effective, but it does indicate his body is receptive to it and every little bit helps. These new meds have literally been a lifesaver but I don't want them to be the only option for him.

Cindy