Can this be happening? :(

[GinaMV]

I was diagnosed Chiari I Malformation in September of 2006 and underwent decompression surgery with duraplasty by Dr. Batsdorf and Dr. Bergsneider at UCLA Medical Center on Dec 1, 2006.  Surgery was considered textbook and I was completely symptom free and have been up until about two months ago.  

What's different?  About 3 months ago I started exercising, very gentle weights and walking with some intermittent jogging.  Everything still okay.  Then about 6-8 weeks ago I kicked it way up by getting a personal trainer.  I'm doing much more weight lifting and everything seemed fine the first couple of weeks.  Then, I started noticing that the lower half of the back of my head started feeling "different".  I thought at first maybe I had slept wrong as it hurt to even turn my head certain ways and I had this almost constant throbbing in the lower half of the back of my head.  Of course, I did know deep down this was my "surgical area", but I know I was in complete denial.  I switched pillows, tried sleeping different ways, etc.  However, it is getting worse.  I am having some movement dizziness/disorientation that passes quickly, but is so reminiscent of my pre-surgery days.  I want to completely deny this is happening, but it is starting to be of a concern to me.  

Could any of this exercise/weight lifting be messing up something with my surgery?  I had follow-up MRI's for two years and everything was always fine.  Should I get an MRI again?  Has anyone else experienced this type of thing.  I keep wanting to think I am just somehow straining something, but my husband is kind of freaking out and saying "get into the doctor now".

I previously lived in northern California and traveled 6 hours to UCLA so I could see Dr. Batzdorf since he is such an amazing specialist in this field. Unfortunately, I am now in Austin, Texas and have no clue who to make an appointment with.

I would appreciate any ideas from any of you.

Thank  you so much

Gina

[GinaMV]

Wanted to let you all know I have an appointment on May 20th for an MRI and then will follow up with the neurologist afterwards.

thank you all so much

Gina ;)

[acaz]

I don't know how close you are to Phoenix, AZ, but I had surgery at Barrow's Neurological Center at St. Joseph's Hospital by Dr. Peter Nakaji. Amazing surgeon, as are the rest of the staff, and really seemed to understand Chiari.

[Viva001]

In the meantime, can you talk to your docs at UCLA?  I think they should know--lots of times surgeons have no clue about the patient later--and maybe it never occurred to them to say "no or minimal weight lifting".

I'm almost a year post op, and once in awhile I have to go back to square one, bed rest.  Maybe that is all you need.  I'm learning to treat myself with care as if I am my own child.  I have tantrums to prove it too, lol.

Good luck!

[GinaMV]

Thank you for the responses.  I was so fortunate to see Dr. Batzdorf at UCLA and now it is hard trying to find someone local as there seem to be no specialist for Chiari in this area.  I did contact several neurologist today and don't have an appointment yet. They want my records from UCLA first before they will accept me as a patient.  I am going to call a couple of them tomorrow and just try and push for an MRI to get in the door.  They can follow up with my records.

I'll keep you updated, thanks :)

As for now, no weight lifting....just cardio :)

[selmaS]

Hi and welcome to the Chiari forum.


Agreed, get to the Dr Now!!

Surgery for Chiari is not a cure, just a means to restore CSF flow...so u deff need to be looked at...now, not later....and make sure they look at possible underlying conditions that may be related.

Like Ehlers-Danlos...u may have it and u may have had minimal instability as a result of surgery and the weights and lifting may have trigger something...???

Until u r looked at all we can  do is speculate and that does not offer help or relief...so see a Dr...we do have a list of Drs u can use to research Drs....there are a few in TX...not sure how close they may be to u...http://www.medhelp.org/health_pages/list?cid=186

Austin is a beautiful area I was there a few yrs back...lol... really loved it.

[frankie_rush]

Hello, I agree also with your husband.  When my surgery was done the doctors gave me a limit I coud lift.  I also listen to my body.  I go to the gym also but I do what my body says.  The trainer you are using does he know anything about Chiari ?  That is the only thing you have done different ? but asking a doctor would be the best.  I would stop the training for a few days and see if things calm down.  I know you want to try and do your best but, got to remember superman even has a weakness.  I was a man weighing 210 and could press 275, and now my limit is 50 lbs at the most.

[AnnieDear]

Unfortunately, I have to agree with your husband. I live in Florida, so I don't know any specialists in Texas. You can try looking at the list of specialists members have seen. It is posted on this board somewhere.

You might also want to try compete rest for a few days and see if that helps at all.

Best wishes,
Annie